tag:blogger.com,1999:blog-65825605502944187382024-03-17T20:02:59.433-07:00Being Sick Has Never Looked So CuteUPDATE:
This blog was initially created following Annabelle's first diagnosis of Eosinophilic Esophaghitis. Since then, her health has deteriorated and led us on the hardest road in search of the true answer for Annabelle's condition. Please keep this amazing little girl in your prayers and thank you for following her story.Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.comBlogger263125tag:blogger.com,1999:blog-6582560550294418738.post-18052363789847122122018-06-29T12:50:00.000-07:002018-06-29T12:50:13.673-07:002018 is our Year!<span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">Your prayers were heard, answered and our family is forever grateful for your faithfulness to our sweet girl.</span><br />
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We’ve been quiet for almost a year now. So much of me as a Momma was broken and defeated by the years this little girl takes from us - the hospitalizations, surgeries, appointments, scheduling, 6yrs of sleepless nights.. unanswered prayers.. I hit a wall about a year ago and shut down when it came to Annabelle. The news that her conditions and diagnosis were genetic, and came from me, were far harder to process than I ever imagined they would be. Smiling and being brave as I shared “genetically, it all came from me.. but that’s ok, now we have our answers!” was a lie. It wasn’t “ok” with me, the amount of guilt I have filled myself with over the last year is unmeasurable. I needed time to reconnect with Annabelle alone and for us both to find or place together. </div>
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Here’s a recap: </div>
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Last summer we learned Annabelle had two markers in her Genetic Testing: POL-G Mitochondrial Disease and MCAD Metabolic Disorder. </div>
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November we were able to meet with the #1 Human Geneticist in the country that specializes in both these conditions as a combination. At that time Annabelle was formally diagnosed with Secondary Mitochondrial Disease, activated by her global GI disorder of Eosinophilic Esophaghitis. At the time of diagnosis, Annabelle was given a Mito-Cocktail that involves 9 medications she takes daily. To have a treatment plan for Mitochondrial Disease is near impossible, but Annabelle got one. Even though it was a long shot that it may work, and the cocktail was truly just the doctors “best guess” - we were grateful for the opportunity to at least have HOPE for Belle. </div>
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Since November, she has done amazing. And by amazing, I mean Annabelle is growing, flourishing and healing faster than I ever knew possible! </div>
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She no longer has any pain.</div>
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She restfully sleeps all night for the first time in her life.</div>
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She smiles daily. </div>
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She laughs, plays and makes new friends.</div>
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She has hope for herself.</div>
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She rarely ever uses her wheelchair.</div>
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She doesn’t take feedings thru her feeding tube.</div>
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Her GI system functions the way it should.</div>
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She hasn’t had any seizures.</div>
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She balances her body temp in extreme cold and heat.</div>
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Her fingernails and hair is growing.</div>
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Her skin is healing.</div>
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Her weight and height is finally in a normal range, and steady.</div>
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She plays softball and gymnastics! Not just wear the uniform and support her teammates, she’s really playing the sport.</div>
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Annabelle, is a completely new, HEALTHY, happy, beautiful little girl. She is risen on the other side of the worst storm you could imagine. She should have never made it this far. The good lord tried to take her home multiple times but has let us keep her here with us. He has used Annabelle to shape so many people and help others. Annabelle is a survivor and the strongest warrior I’ve ever met in my life. She deserves this victory. </div>
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So thank you - all of you, for your endless love and prayers. During the dark times, thru the tears we’ve shared, during the celebrations and now on the other side of our rainbow. Thank you.</div>
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This week, we’ve been in Cincinnati Children’s Hospital for a follow-up. We needed to perform an Upper EGD and change her GJ-Tube. This was her 34th time in the Operating Room. Among a few other appointments, we also met with our Geneticists to see how the Mito-Cocktail is working. </div>
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Tuesday morning, while Annabelle was in the OR, Dr. Putnam met me in a consult room and shared devastating news. The EoE has returned, and it’s worse than it’s ever been since we’ve been a patient at Cincinnati. Our family packed our car and drove west KNOWING this would be a wonderful trip filled with only good news. I’ve waited to make a post and update on Annabelle until this trip bc I wanted to share the best news with you guys. Hearing those words was a hard blow. It literally made me sick and drop to my knees. For 7months straight we have quietly watched Annabelle overcome all her struggles only to learn she was deteriorating on the inside. </div>
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Our efforts and treatment are not a fail, we will continue to medicate her using our Mito-Cocktail, but we have to diligently get the EoE under control. You see, her Mitochondrial Disease is what globally destroys her body and will take her from this world. The only way to stop the diseases manifestation is to control what sets it off - and that is the EoE. If we cannot regain control or the EoE, we will quickly lose control of the Mito all over again. The trick though is that we haven’t changed ANYTHING to cause the EoE to relapse. Nothing. If we had been trialing a new food, that would make sense as to why the disease is back.. but we chose in November to never do a food trial again in order to have total control over the EoE and Mito. Now, out of nowhere, we’ve lost control of it all. </div>
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Our game plan is another long shot, but with enough prayers, I know anything is possible. We are going to remove wheat and soy from Annabelle’s diet and schedule the OR again in 90 days to see if we’ve regained control of the EoE. Meanwhile, we will cross our fingers that the Mito remains stable. If this plan doesn’t work, Annabelle will have no choice but to stop eating food and become 100% tube fed again. This time, I don’t know if/when she’ll get food back as we have so many times before. We’ve known how lucky we are for such an impressive diet while battling EoE, but darn, this news is still tough. Especially to a 6yo. </div>
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She took the news well, she understands her boo-boos are back, but her spirits and faith is so high, she couldn’t be discouraged no matter how hard you try. That’s what the last 6mon have done for Annabelle - it’s recreated a whole new little person with restored faith and filled with bursting love and happiness for all things around her. This attitude and our prayers I know will get us thru this small set-back. </div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com3tag:blogger.com,1999:blog-6582560550294418738.post-21411401590402884092017-09-14T17:57:00.001-07:002017-09-14T18:03:33.727-07:00And here we areThe summer for the Bishop family has been full of many highs and lows. We were been flooded with love from all over during our Answers for Annabelle Superhero Fun Run. It was such a blessing to see so many people come out to high five, run, play and spend the day with Annabelle. Undoubtedly one of our best memories as a family.<br />
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Checkout the pictures of the event here:<br />
<a href="https://www.heavenbluntphotography.com/new-blog-1/2017/7/18/answers-for-annabelle-superhero-5k-fun-run">https://www.heavenbluntphotography.com/new-blog-1/2017/7/18/answers-for-annabelle-superhero-5k-fun-run</a><br />
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August 23rd, Annabelle became a Big Sister to Juliette Catherine. Belle is moving into her role with so much excitement. And although Juliette still isn't home with us, we know she will fit right into our family perfectly as soon as she is.<br />
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We've had a few summer getaways, we've spent many late summer nights with friends, and inevitably school has come around again and we've begun 1st Grade!!<br />
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Though the blessings and distractions have filled our days as a family, we haven't been able to avoid the elephant that lingers among our home.. today marks 94 days since Annabelle ate a meal, enjoyed dinner around the table, celebrated her friends birthday by enjoying her own safe version of a cupcake. Today marks ninety-four awful damn days that our family has fought literally every. single. meal. around. Not one single day has been easier than the last. Not one single day went without tears. Not one single day has passed where it didn't break our little girl down into a depression like we've never seen before. Annabelle's tiny soul has been shattered during the last 94 days, and I have no idea how long it will take to repair.<br />
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I usually update and post often, at least I try. But I have found that during our families hardest time, when we don't quite know how to respond or put our next steps in front of the other.. it's hard to update. That's kinda where we've been. I hate sharing bad news, I want to share celebrations with you all, but honestly, this summer has been excruciating for us. We have exhausted ourselves as parents to distract Annabelle any and every way we know how. Poor Madelynne hides to eat her meals, we avoid cooking indoors whenever possible, heck, I hardly even cook anymore! We surely don't go to restaurants if we can help it and now that school is back, Annabelle sits in the classroom alone while her class goes to the cafeteria for lunch - her choice - she said she can't see other people eating. I know it would just crush her.<br />
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So here we are. <br />
Tomorrow, Friday September 15th and 6:30am, Annabelle will undergo her 30th surgery to determine whether or not her Eosinophilic Disease is still active or if it's healed. Our doctor will assess the motility in her stomach and how it empties to see if that portion has healed enough that perhaps she can digest foods thru her actual stomach again. For the last 94 days, we have bypassed her failing upper GI, including her esophagus and stomach, and have been feeding Annabelle thru her small intestines via GJ-Tube 20hrs x day. Our prayers are heavy that her body has healed itself enough we can safely re-introduce foods back into her diet.<br />
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Because Madelynne is in school, and Juliette is still in the NICU - Daddy took Annabelle alone to Cincinnati, OH for this trip. My momma heart is shattering! This is the very first time I have been away from Annabelle.... ever maybe(?) This is definitely the very first time I am not there for a medical visit, let alone a surgery! I am a nervous wreck. As I packed her last bags and strapped her into the car this morning for her and daddy to drive away, my heart sank... they pulled away and the tears fell. AK knows the drill, he knows what to do and he will communicate all my questions and concerns to Annabelle's medical team (or else!) - I fully trust and know just how luck Annabelle is to have two parents equally involved in all her needs.. but that still doesn't appease the mommy heart, does it?<br />
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I promise to update tomorrow night after her procedure. Please say a prayer if you could that Annabelle is able to get food back and we as a family can return to finding a bit of normalcy in the midst of daily chaos.Thank you always for understanding, thank you even more for sticking by us as we have silently weathered a rough storm as a family this summer.. we love you guys immensely and your prayers are felt, I promise.Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com3tag:blogger.com,1999:blog-6582560550294418738.post-35115611565542016872017-06-27T12:50:00.002-07:002017-06-27T13:05:49.668-07:00"Even when you know it's coming, you're never prepared for how it feels"<div style="text-align: center;">
<i><span style="font-size: large;">"Never be ashamed of a scar. </span></i></div>
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<i><span style="font-size: large;">It simply means you were stronger than whatever tried to hurt you."</span></i></div>
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<span style="font-size: large;"><span style="font-size: small;">Our family is scarred. We have been wounded emotionally, physically, financially, our faith has taken it's toll, our friendships and family have been redefined, our own family dynamic has been forever changed by the beast that is hurting Annabelle.</span></span></div>
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<span style="font-size: large;"><span style="font-size: small;">We are not fearful of these scars, rather learning to adjust and readjust, sometimes by the hour. Our family is and will forever be scarred by what we are going thru, this journey is shaping and building us, and while we are grateful for the lessons, <b>we are scarred</b>. </span></span><br />
<span style="font-size: large;"><span style="font-size: small;">Some people call them blessings, but right now, they're scars from wounds we never could have imagined. </span></span></div>
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<span style="font-size: large;"><span style="font-size: small;">It's been 13 days since she underwent a very unplanned, unscheduled, emergency surgery in Cincinnati, Ohio. A routine visit that was intended to be only a discussion quickly escalated out of hand and landed our entire family on the edge of our seat, praying hour by hour about what would happen next. Daddy was home with Madelynne and had projects going on at work; we considered flying him to Ohio to be with us but for a flight ticket of $500, it wasn't feasible. We were in limbo with hotels as we didn't have reservations to stay longer.. and I was running out of medical supply. We managed though, lots of phone calls and extra prayers, we made it to Tuesday morning and checked in to the Surgery Center at 8am. </span></span></div>
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<span style="font-size: large;"><span style="font-size: small;">Annabelle was very nervous for surgery this time, I believe because she wasn't prepared. She asks a lot of questions about her upcoming surgeries and we always tell her the truth and to the level of detail she will understand. This surgery however, I had to explain they would be giving her a different type of tubey and when she wakes up, it will be sore. She knew her throat and tummy would hurt as it always does after an endoscopy but this procedure added another dimension.. one she couldn't understand and didn't particularly care for. This brought a lot of anxiety... and to be honest, to the both of us.</span></span><br />
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<span style="font-size: large;"><span style="font-size: small;"><b>Surgery #29</b> was not nearly as smooth as our last several have been. We follow an extremely specific anesthesia plan that we've been using for years, but this time a few things were different: she didn't have an IV to deliver versed, so instead we gave her liquid versed via g-tube which gave a different effect. She was also quite nervous and full of anxiety, so once the drugs kicked in, she became panicked. That's the worst way to go under anesthesia :( it usually means recovery would be hard.. and it was. </span></span><br />
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<span style="font-size: large;"><span style="font-size: small;"><br /></span></span>While she was being moved from the OR, our doctor met with me in a consult room to discuss what he found during surgery. The Esophaghitis was still very active :( we were both absolutely shocked as we genuinely expected it to be healed by now. It had been 5 months since ending our pork trial and her body still was not healing. He also shared how the GJ-tube placement went and explained Annnabelle had excellent anatomy for the tube and we shouldn't experience many problems with the placement (thank goodness for some good news!)<br />
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Shortly after speaking with Dr. Putnam, I was allowed to join Annabelle in the PACU.<br />
That walk is always hard.. I follow the bumble bee's on the floor that lead me to bed #14 and with each passing bumble bee, I could hear a disoriented cry - a mother knows her child's cry but after surgery, anesthesia and intubation, it sounds so different. I pray it isn't my daughter. My pace increases and the sound becomes more and more familiar as I turned the last corner.... it is Annabelle :( My heart dropped and I raced to her bedside.<br />
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If you haven't experienced being with your child as they're emerging from anesthesia, it is one of the most heart-wrenching things to watch. They are confused, disoriented, absolutely terrified and hurting - but they don't know who you are, they don't recognize your voice and you can't comfort them. You just pray the minutes tick by faster but then the seconds turn into hours. I sing our song that the girls get sung every morning:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhv541zTWiLCZbAXUQ3l84w8aZMRYizGE6vl0LDpaJqq4gbnggfXv4sYFMIPDRiKKjJjblYODKzYM5MW_szet3sNTY2a1QUn40np2nocLAlWWTOkinV2Z6B_5wgtjKYkyjAx6bWLGkSbpK/s1600/4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="460" data-original-width="345" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhv541zTWiLCZbAXUQ3l84w8aZMRYizGE6vl0LDpaJqq4gbnggfXv4sYFMIPDRiKKjJjblYODKzYM5MW_szet3sNTY2a1QUn40np2nocLAlWWTOkinV2Z6B_5wgtjKYkyjAx6bWLGkSbpK/s400/4.jpg" width="300" /></a><i>Good Morning, Good Morning</i></div>
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<i>Good Morning to you</i></div>
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<i>I've waited all night</i></div>
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<i>Just to see you</i></div>
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<i>So Good Morning Annabelle</i></div>
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<i>Good Morning to you</i></div>
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It took Annabelle about 40 minutes from the time I got to her bedside until she began to recognize who I was and she calmed down. Fortunately, she did not seem to be in much pain other than being sore, though she was extremely weak. Our doctor released us directly from PACU to go back to the hotel and rest for the day. We checked into a hotel near the hospital and spent the evening watching American Ninja Warrior and napping.<br />
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We stayed in Cincinnati until biopsy results were back from Pathology on Thursday. In the meantime, we had a wheelchair appointment to have the chair adjusted and found a few things to do in the city - like visiting the Cincinnati Zoo :)<br />
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Annabelle was tolerating her J-tube feeds very well. I didn't know what our goal rates were or much at all about the new tubes so for a couple days, her and I both just winged it together. We flushed the tubing, hooked up and ran at a low rate and slowly increased every several hours until she was no longer hungry. I kept her G-tube (stomach) vented and by day 3, she didn't appear to be bleeding from her stomach any longer.. she was healing and we were so grateful.<br />
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Thursday we packed our car to go home, but before hitting the road we made our last stop at the hospital to visit Dr. Putnam where we would hear what was happening, what our plans were and what the future holds. My stomach sank and daddy held his breath from Richmond and watched his phone until I gave him the update. The world froze for the next couple hours and as rocky as the ground was below our feet already, somehow an earthquake hit our family and de-railed us forever.<br />
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This is hard to write .. this is the sole reason I have been avoiding this update :'(<br />
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...<br />
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<i>Secret Revealed: We agreed to move forward and pay for Genetic Testing weeks ago. Our decision to move forward was made when we committed to the <a href="https://www.eventbrite.com/e/1st-annual-answers-for-annabelle-superhero-fun-run-tickets-34596707684" target="_blank">Superhero Fund-raiser for July 15th</a>. Our prayers are heavy that this event will help pay
for the testing.. as a mommy and daddy, our conscious and hearts couldn't go
another day without knowing what was happening to our daughter.</i><br />
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Genetic Testing is back and has found two conditions:<br />
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<span style="color: #990000;"><span style="font-size: large;"><b>MCAD Metabolic Disorder</b> </span> </span></div>
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<span style="color: #990000;">"Condition that prevents the body from converting certain fats to energy, particularly during periods without food (fasting). </span></div>
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<span style="color: #990000;">Signs and symptoms of <span class="ghr-condition">MCAD deficiency</span>
typically appear during infancy or early childhood and can include
vomiting, lack of energy (lethargy), and low blood sugar (hypoglycemia).
People with <span class="ghr-condition">MCAD deficiency</span>
are at risk of serious complications such as seizures, breathing
difficulties, liver problems, brain damage, coma, and sudden death."</span></div>
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<span style="color: #990000;"><br /><span style="font-size: large;"><b>Mitochondrial Disease</b></span></span><span style="color: #990000;">"Mitochondrial diseases result from failures of the mitochondria,
specialized compartments present in every cell of the body (except red
blood cells).</span><br />
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<span style="color: #990000;">
</span><span style="color: #990000;">Mitochondria are responsible for creating more than 90% of the energy
needed by the body to sustain life and support organ function. When
they fail, less and less energy is generated within the cell. Cell
injury and even cell death follow. If this process is repeated
throughout the body, whole organ systems begin to fail.</span><br />
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<span style="color: #990000;">The parts of the body, such as the heart, brain, muscles and lungs,
requiring the greatest amounts of energy are the most affected.
Mitochondrial disease is difficult to diagnose, because it affects each
individual differently. Symptoms can include seizures, strokes,
developmental delays, inability to walk, talk, see, and digest food
combined with a host of other complications. If three or more organ
systems are involved, mitochondrial disease should be suspected."</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh45SnJ60k3xeN_y-L7dAeuhcvD9AzVON-NLqolVX8LNbme2sXxCBt3mGpKA-eT5QdPXeh6XDuy9zkogEa6OvC3UJCuFeTEogYtClNa1jLIU_AZ8F5rkEycptqV5bDnmQQpEb_UB3XxHiet/s1600/b6316d94669a972b57343a277c2aecfb.jpg.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="658" data-original-width="900" height="465" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh45SnJ60k3xeN_y-L7dAeuhcvD9AzVON-NLqolVX8LNbme2sXxCBt3mGpKA-eT5QdPXeh6XDuy9zkogEa6OvC3UJCuFeTEogYtClNa1jLIU_AZ8F5rkEycptqV5bDnmQQpEb_UB3XxHiet/s640/b6316d94669a972b57343a277c2aecfb.jpg.png" width="640" /></a><br />
AK and I have heard both of these disorders in conversation with doctors for years. Although our prayers have always been heavy that we wouldn't hear this news, our prayers have also been "Just give us answers, please God, just tell us what this is so we know how to help our daughter." Nothing though prepares you for when you hear those words.<br />
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We did also opt to find out another detailed level of information. When we met with the Geneticist, they asked if we would like to back-up any findings to the parents genetic DNA. Meaning, if they were to find something in Annabelle's Genetic DNA - we would cross reference those findings to both AK and I to ensure we have a clear diagnosis. <br />
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Just as hard and fast as the news was to absorb that my little girl was fighting two life-threatening diseases, I also learned that Annabelle had inherited both from her maternal side. Me. Her momma. The loving, life-giving person that has been by her side for twenty-nine surgeries, held her down for hundreds of needle sticks, prayed on my knees for years - I now hold the knowledge that all my daughters pain and suffering was inherited from me.<br />
<i>... I will pause to simply say, there are no words. There are no words that AK can generate, there are no words the doctor offered nor is there anything that I think I am ready to hear that will provide comfort in bearing this news...</i><br />
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Cincinnati Children's has a Human Genetic doctor that specializes in the specific variation of Mitochondrial Disease her Genetic Testing revealed. We will meet with that doctor August 23rd to discuss the disease and it's progression in more detail. At this time, we are aggressively trying to control and slow it's manifestation. <br />
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With the symptoms we know Annabelle is presenting already, she appears to be in Stage 2. The progression and her symptoms remained fairly consistent thru infancy but during the last year they have begun to shift and change. Here are the areas that are suffering now (using the chart above as an easy reference):<br />
<ul>
<li><b>Nervous System</b> - Seizures. Movement disorders. Developmental Delays. Poor balance/coordination (Annabelle began having seizures around 2yrs old, they stopped for a few years and have now returned. Her Neuro-Psych doctor has diagnosed her since an infant with multiple developmental (both physical and cognitive) delays - she's spent a lot of time in therapy and has improved.)</li>
<li><b>Skeletal Muscles</b> - Muscle weakness, exercise intolerance, pain, fatigue, low muscle tone. (This was confirmed with our Neuro-Muscular doctor who we have been seeing for years as Annabelle's lower body has succumbed to the exercise intolerance / fatigue / weakness and pain. With a suspected diagnosis of Mitochondrial Disease and supporting muscle biopsy all her symptoms landed us with the wheelchair that we now use daily.)</li>
<li><b>Liver </b>- Liver failure. She has been in this category since 2 years old when we removed protein from her diet as much as possible in an effort to stop stressing her liver. Her liver does not filter the bi-product of protein (ammonia) out thru her urine like it should. Instead, Annabelle's liver filters it directly back into her blood stream. High amount of protein = high amounts of ammonia = ammonia in her blood stream. First stop: brain = Seizures.</li>
<li><b>Kidneys</b> <b>& Endocrine</b> - Beside the inability to balance her internal body temperature, these systems are not currently affected. </li>
<li><b>Digestive Track</b> - I don't even need to list the GI trouble she has, you know that story! </li>
<li><b>Heart </b>- Beginning January 17', her heart began to show signs of trouble. Each and every time her body or system is stressed, her blood pressure drops and takes days/weeks to improve. We have never seen cardiac problems with Annabelle until recently. </li>
<li><b>Eyes</b> - Drooping eyelids. At this time only her left eyelid droops. It has since she was a few years old. At first we thought it was the result of a seizure, but it's now better explained by Mito. She's also always had an excellent bill of health with the optometrist until her most recent check-up when she failed her vision tests. We are waiting now to have her assessed again. </li>
<li><b>Ears</b> - Currently no symptoms</li>
</ul>
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<span style="font-size: large;">Our Plan</span> </div>
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With the understanding of both Metabolic and Mitochondrial Diseases, Annabelle's doctor was able to formulate the best plan of care for Belle moving forward.<br />
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In order to keep her body functioning as smooth and effortlessly as
possible - we can never allow her to fast and we need to keep her well
hydrated. Thus resulting in continuous J-Tube Feedings. Ideally we would run Annabelle on a slow feed for 23hrs x day. That limits so much of her quality of life.</div>
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I looked down at Annabelle who was playing on my phone (watching YouTube videos of Baby Alive, if I am being honest), and I just couldn't imagine her being hooked to a pump for the rest of her life. Perhaps one day we will be there, but as her mom, I needed to be her advocate right now. I asked if there was any room for negotiation and we agreed to 20hrs x day, absolutely no less. That would give Annabelle 4 hours every day to unhook from her pump and climb trees, play, run, ride her bike, swim in a pool etc. We agreed to split that time, 2 hours in the morning and 2 hours in the evening.</div>
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We also needed to allow her body to heal from the Esophaghitis that was still aggressive and active. The bulk of the damage was at the bottom of her esophagus which tells us reflux (despite her stomach being wrapped tightly around her esophagus to AVOID reflux) was still quite active. Her stomach itself was not working properly. It was dumping food heavy and quickly, not allowing her body to absorb nutrients and causing her to loose weight.<br />
We knew the top portion of her GI was failing, and know the bottom portion is failing, but now we've lost her stomach too :( The decision was made to stop feeding Annabelle ANYTHING by mouth, put absolutely nothing into her stomach and only provide feeds thru her intestines from now on.<br />
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We will follow back with our team in September to perform Surgery #30, biopsy again, change her GJ-Tube since it has to be done in the OR and with Radiology. The doctors will be able to assess her progression again at that time. Meanwhile, we will meet with the Human Genetics doctor in August and begin to wrap our family and our understanding around these new Genetic findings.<br />
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We left the hospital numb. Annabelle kept asking "What did he say mommy? Are my boo-boo's better? Are we going home now?" I was speechless. I was absolutely, 110% broken inside. I picked Annabelle up and while pushing her wheelchair with one hand, I carried her in my arms to be closer to her. She laid her head on my shoulder and said over and over "It's okay mommy, I'm okay!" I silently let tears fall from my cheeks. The walk out of that hospital was silent. The moms and dads I passed down each hallway offered the most compassionate solemn head-nod - every parent in that hospital is walking a path they never intended and cuts deep. Today was the day we stepped foot onto a different path... and they understood. No judgements, no words needed, a simple head nod of acknowledgement from one grieving parent to another that said "I know...... I know..."</div>
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We got into our car in the parking lot and I kissed Annabelle over and over and told her how much I loved her and how proud I was of her. We buckled in and I ensured her carseat was harnessed super snug and safe for our trip home. Once we had our movie (Trolls) playing on the TV, I selected "Go Home" on our GPS and exited the parking garage. As soon as I was able to breathe and clear my thoughts, I made sure Annabelle was occupied by the TV with headphones and called AK. That was one of the hardest conversations we have ever shared, and I wish more than anything it didn't have to be over the phone.<br />
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We drove almost two hours before I realized I never turned the radio on and the car was silent. Peeked back to Belle and she was happily watching her movies.</div>
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Another hour we stopped for gas and potty. I grabbed a water from our cooler, got back on the highway and again considered turning the radio on but couldn't bring myself to decide what type of music I wanted to hear.. so I left it off. <i>Even today, I avoid the radio. Classic Rock is my favorite, but every song has a memory "before we got our diagnosis". Pop music is too happy.. I don't want to be happy, I am furious. Country music will make me even more depressed and Contemporary Christian, which is what we typically listen to, simply felt like a salt in my wounds. I was and am still so broken and bitter, our faith is being tested and while I know and still trust God to care for my little girl - I am heartbroken. I still don't want to listen to the radio. </i></div>
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After driving for several hours, Annabelle was asleep. We passed Charleston WV, our half-way point, Belle was still snoozing so I kept driving. Before we knew it we were in Beckley, WV and I asked Annabelle if she was ready to stop and get a hotel for the night. She begged and pleaded to go home. I've never driven from Cincinnati, Ohio to Richmond, Va <b>straight </b>& on my own<b> </b>but that night.. in my numb state and a motivated Belle to see sissy - we did it. We arrived home shortly after 10:30pm and met daddy in the driveway. He immediately picked up his baby girl and loved her far too long as I was next in line waiting for that same embrace. Belle was excited to be able to see her sleeping sissy, so AK and I both fought back our tears together and joined Annabelle to wake sissy and tell her she was home.</div>
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We've never slept better to be back with our family. We've also never slept worse knowing what is happening to our family. I think that night was the most solid, non-restful sleep I have ever gotten. By 4am AK and I were both awake and crying.<br />
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It's been a few weeks since then. And our days, while they are not easy by any stretch of the imagination, they are etching their way into a routine of the Bishop house. We are equipped again with IV poles both upstairs and downstairs. We have medical supplies from one stretch of the house to the other. Annabelle is becoming a champion at hooking and unhooking her own feeding tubes. We have mastered how to clean around her stoma without pain and it is healing quite nicely. The best news is that Annabelle feels GREAT. I am not kidding. She feels and looks better than I have seen her in years, YEARS. She is rested and sleeping 10hrs every night. She wakes and is not grouchy or exhausted. Beside the daily / sometimes hourly begging and crying to have food, she is cheerful.<br />
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We have not told either of the girls her diagnosis, for all they know "we still don't know what is wrong". If you've read this blog before, you know that our philosophy is that we never lie to our girls and we tell them the honest truth about every step. We are just at a loss for our own words right now.<br />
We can't bring ourselves most times to tell family and friends what is happening, we don't know the right way to explain a lot of the unknown future.. when we find the right words, when we find the right timing and when we think the girls are prepared to hear - we will sit them down and explain. But in the meantime, the monumental changes in our home and family dynamic are enough to process. Not allowing our 5 year old to potentially never be allowed to eat food again, forcing our 8 year old to not mention or eat in front of her sister, hiding in closets or eating on the porch after bedtime is enough for us to try to get used to.<br />
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We are spending our days finding the blessings in everything. We push Annabelle to explore and see the light of life around her despite the confinement of being in the house most the day and tethered to pumps. We have gotten out of the house and cheered Madelynne for our first Swim Team meet of the season - Annabelle also got a chance to cheer her little friends that were swimming too (we had to pull her off the team weeks ago. This should have also been Annabelle's first swim meet, but instead we watched from the side of the pool together).</div>
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Over the weekend we took the girls to Kings Dominion on behalf of Dominion Energy (my employer sends everyone for a 'Family Fun Day'). This was the first time Annabelle had to sit thru a meal and watch us eat but she could not. She handled it as well as can be expected. Beside unhooking/hooking from her pump to ride rides, she was able to be pushed in her chair and keep up with sissy the entire day. The only learning curve that AK and I need to figure out is how to keep her hydrated and cool while outdoors in the heat.. </div>
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One last thing that I do want to share, is while our family is undergoing a living nightmare, we are also experiencing a miracle in the making. <b>Our family is growing</b>, and after losing three babies, we are happy to announce another little girl will be joining our family this October.<br />
Juliette Bishop </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8dZrrvXZFGj8Nf8Focz0zuvU02DXkbKvcNmpqIk38LL_5Se1GmuE98yiyeNYcVqkRo8gblRYJ95namKsd1ki1j7MNx6NOyKh_pU5mU8yp06cE2WFZnDIo2wr0i3EAsNsPeGRJQZtKiFSL/s1600/NikkiSanterrePhotography_BishopFamily-31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1067" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8dZrrvXZFGj8Nf8Focz0zuvU02DXkbKvcNmpqIk38LL_5Se1GmuE98yiyeNYcVqkRo8gblRYJ95namKsd1ki1j7MNx6NOyKh_pU5mU8yp06cE2WFZnDIo2wr0i3EAsNsPeGRJQZtKiFSL/s640/NikkiSanterrePhotography_BishopFamily-31.jpg" width="425" /></a></div>
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Photo Credit: <a href="http://nikkisanterre.com/" target="_blank">Nikki Santerre Photography</a></div>
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With that being shared, there is a lot of work going on between my doctor and Annabelle's team to determine if Annabelle is a candidate for Juliette's cord blood and tissue. At this time, our GI team does not have a specific plan to use it but the genetic team may and we have been encouraged by all to collect Juliette's cord blood and tissue. Please say a prayer that these two sisters carry the potential to help one another. God works in mysterious ways and nothing is ever by chance, I believe in my heart this sweet girl was sent here to complete our family.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaFF95mgQXsv28LMfo1YL8PUCptnyzCt3ACIbpak0TMs8F_VRg3yZzq_oeWCOEBrckakvT_1ir0CxllBqqFgVNj__7onDj46eIxvy_Xq32GyF6Uijhj4dZQKqXpo1VNsYi-QYAoRmeP-go/s1600/58927dc4af000915407b3cac802435bb.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="268" data-original-width="403" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaFF95mgQXsv28LMfo1YL8PUCptnyzCt3ACIbpak0TMs8F_VRg3yZzq_oeWCOEBrckakvT_1ir0CxllBqqFgVNj__7onDj46eIxvy_Xq32GyF6Uijhj4dZQKqXpo1VNsYi-QYAoRmeP-go/s320/58927dc4af000915407b3cac802435bb.jpg" width="320" /></a>Annabelle has a fierce army behind her. I want each and every one of you to know how deeply we appreciate your love, support, kind words, encouragement and prayers. If you don't pray, we just ask that you love those around you a bit more today. Hug your babies, young or old. Pick your battles more diligently. Stop and breathe in the fresh air. Smile at a fellow parent that you pass, because we never know what another individual is carrying. Those of us that are strong have mastered how to hide our pain behind a smile, even when we are broken into pieces within. All these things I have to remind myself constantly - I have to remember to pick my battles, choose my fights, exhale when things are good, breathe when times are hard and cry in front of my kids when they are crumbling because we are ALL human and nothing in this life is promised. God intricately built us just the way we are and for a purpose, it's our gift to live it out. Meanwhile, we can help one another, love one another, support this little girl and together we can also help her fight a battle no one ever expects to fight.<br />
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<b>July 15th,</b> in Hanover VA at Pole Green Park, we are having a <a href="http://superbabybelle.blogspot.com/p/answers-for-annabelle-5k-superhero-fun.html" target="_blank"><span style="font-size: large;">5K Superhero Fun Run</span></a> for Annabelle. This event is being hosted by a dear friend we met thru church and 100% of the proceeds go directly to the cost of Genetic Testing and Annabelle. The trips to Cincinnati, Ohio for treatment is overwhelming, the price we pay to have our family together when we can isn't always affordable but the cost for Genetic Testing and answers is detrimental to our family. (I am still waiting on the bill... we were quoted $14,000-19,000 depending on how far into detail they needed to explore.) </div>
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Please. Please, come out in July to support Annabelle. We talk every single day about the fun run and meeting new friends. She questions every night if God hears her prayers and I would love nothing more than to show her just how loved and supported she is by your attendance. Even if you do not want to run (I'm not running!!!), still come out! There will be plenty vendors, food, drinks, custom Annabelle t-shirts, bounce houses, games, raffles, live music and more. We want this to be a really fun family event and we look forward to seeing you and making it happen.</div>
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To sign-up for the Fun Run, <a href="https://www.eventbrite.com/e/1st-annual-answers-for-annabelle-superhero-fun-run-tickets-34596707684" target="_blank">click here</a>.</div>
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<i>(we still have vendor positions available, sponsors available etc. contact Tammy Snead for more information: 804-564-9777 / tammyrsnead@gmail.com</i></div>
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If you would like to support Annabelle and make a donation, <a href="https://www.gofundme.com/genetic-testing-annabelle-bishop" target="_blank">click here</a>.</div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com2tag:blogger.com,1999:blog-6582560550294418738.post-72621767184437740362017-06-12T15:14:00.000-07:002017-06-12T20:40:18.446-07:00Our world just dropped upside down<div style="text-align: center;">
<em>She's playing with a beach ball and making silly faces to me from in the pool. She's obsessed with mermaids and I think if it were possible, my fish of a daughter would actually grow a mermaid tail from how much time she spends in the pool over the summer.</em></div>
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<em>But my sunglasses are hiding the tears that keep falling from my eyes like a slowly leaking faucet.</em></div>
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<em>Why is this happening to our family? Why is this happening to such a happy, beautiful, strong little girl? Surely she deserves a break, God, surely you wouldn't do this to hurt her - but what can she possibly gain by losing the happiest parts of her life in addition to the hell she is already enduring?</em><br />
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This trip was intended to be informational and an opportunity to discuss Annabelles last admission in Richmond. We planned to see GI Motility, GI EoE and OT.<br />
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Points to discusss were:<br />
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<li><strong>GI Motility</strong>. Continued extremely loose stools that leaves her soiling herself multiple x day. Chronic pain, especially during fast feeds.</li>
<li><strong>GI EoE</strong>: Followup to discuss the random ileus last month, why she took so long to recover and also why she isn't back to her baseline since. Our scope in January showed Annabelle had relapsed during the pork trial so we removed all pork from her diet and were scheduled to begin our next trial this spring.. Annabelle hasn't been doing well for months so we decided to cancel the food trial. Add the spontaneous ileus, pain during eating AND bolus feeds, extreme fatigue and weakness, unstable BP etc and we had quite an appointment planned.</li>
<li><strong>OT Wheelchair Clinic</strong>: it's been a year since we receiving Annabelles wheelchair so we're due time to make some adjustments according to her height growth over the year. </li>
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Annabelle and I hit the road together Saturday afternoon, leaving her sister and daddy behind. Because this trip was intended to be short, sweet and to the point, we didn't find value in daddy taking time off work or sissy missing any school.<br />
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To say the girls were upset about the trip is an understatement. They spent the morning inseparable.. playing games, snuggling, climbing trees together and finally locked arms when we told them both it was time to leave. The pain and fear tore across Annabelle's face as she gripped her sissy tighter. <br />
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Mady tried so, so very hard to be strong but was quickly also taken over with emotion - she paced between wanting to go inside and be alone and staying locked arms with Annabelle, absolutely pleading with AK and I not to take her away. It was gut wrenching and hands down the hardest separation our family has endured to date. The somber drive down the road as I watched AK and Mady disappear from the rear view mirror and calm Belle in the backseat from hysterically crying was about all the strength I had to not crumble.<br />
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The drive wasn't bad, we never hit traffic and only stopped a few times before arriving at our hotel for the night in Charleston WV. It took about 5.5hr which isn't too bad. We were hungry and very sleepy.<br />
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Sunday we hit the road by 7am. There was a Starbucks in our hotel parking lot so we made a lap thru the drive-thru and even found Annabelle a new drink! Caramel Frapp with, coconut milk, no caffeine and no whip. She was in heaven!<br />
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We stopped in Dayton Ohio for lunch and a break to walk around and then made it to our hotel in Cincinnati around 4pm. The trip wasn't going terrible.. it was smooth, not rushed because we gave ourselves plenty road time. Annabelle had FaceTimed sissy and daddy enough that she wasn't as upset any longer. We counted our blessings and focused forward to our appointments Monday. Dinner was relaxing, although, as typical Annabelle goes.. within minutes of eating, she was in pain :(</div>
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<span style="font-size: small;"><strong>Today, Monday, everything took a drastic turn for the worst. </strong></span><br />
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We arrived to the hospital shortly after 8am and first delivered a box of donations to the hospital that was collected by Annabelle's school. There were so many bottles of bubbles and Annabelle was so very proud to donate them for other boys and girls in the hospital like her.<br />
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Next, we followed our signs to Concourse C, checked in and as soon as we sat down in the waiting room, we were taken back to meet with GI Motility, Dr. Kaul. As planned, we talked about her last surgery with Motility which included Anorectal dialation and Botox injections. Our conversation included the ileus and extremely lose stools in which he then noted her weight... she's lost weight. <em>I've mentioned a couple times to AK that Belle looks skinny but I just thought she was thinning out and getting taller - I hadn't registered she was losing weight.. in fact, she's lost several pounds since January </em>:( Not gaining weight for a GI pediatric patient is one thing to treat, but losing weight over 5mon is cause for concern. He ordered some scans and X-rays right away, we would hear from him once those are back.<br />
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Our next stop was to see Dr. Putnam. By this time, Annabelle was getting very tired and weak (not uncommon), she hadn't walked much at all in the morning beside around our hotel room but her legs were already tired and buckling when I encouraged her to stand. Still though, I flipped thru my notebook to make sure all my thoughts were organized and the conversation with Dr. Putnam would be worth our trip when he comes into our room.<br />
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<span style="font-size: large;">I was blindsided by what unfolded during the next hour... </span><br />
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<em>With Annabelle crawled onto my lap and ignoring Dr. Putnam, she moaned as he assessed her and stayed silent as a mouse while we talked. I think she knew something was wrong.. I watched her body flood with anxiety as the minutes went by.</em><br />
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Dr. Putnam expressed his concern about her weight loss, the feeding intolerance at times and discomfort. I asked repeatedly if we can blame the Esophaghitis for her symptoms and he dismissed each and every one. There was no way EoE could be to blame for all parts of her body showing signs of failure.. Perhaps though, the small percentage of our problems = her refusal to eat much food and pain when eating, perhaps that could be explained by the Esophaghitis being active. The problem with this theory is that it's been almost 5months since we removed Pork from her diet and the inflammation should be resolved by now. That is, if the pork was the ONLY culprit to her last relapse. (Hold on tight, I know this sounds confusing.. and it's going to get worse but I promise to wrap it up in a nutshell that's easier to comprehend).<br />
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Eosinophilic Esophaghitis is such an evil, ugly, relentless disease that just when you think you've figured out it's paterns, it can change on you. When Annabelle was first diagnosed, she didn't eat for 6months. Her body was finally in remission and healthy enough for us to begin our journey to finding a food that EoE wouldn't respond to and attack. We started her very first food with sweet potato - it was a fail. So we went back to zero food until she healed. Next, we trailed apples = success! From there, one food at a time, every 12weeks, we would trial another food and pray it was safe to keep. Some were failures, but we knew during her scope that if the disease was suddenly active again, it was 99% likely due to the last food we were just trialing. So we would remove that food and continue with the foods we knew were safe and keep praying and looking forward. We've been doing this for almost 4years straight. I explain all this to tell you - the disease has an ugly curve ball. EoE can decide out of the blue, that even though she's eaten something like apples for years - it can suddenly decide 'apples' is a trigger and set the disease off. Because her diet is so large (in comparison to most EoE kids), we have absolutely no idea how to figure out which food is the culprit. So what do we do? We take <strong>ALL</strong> her food away. Yes, we stop feeding her completely until her body heals and then one food at a time, we start all over from scratch. <br />
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Now, there's a chance this is NOT EoE flared - if that is the case, we have bigger problems and a lot more work to do. <br />
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(There's also a third element that were not ready to share quite yet.)<br />
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Beside the discussion about how to address a possible EoE flare, Dr. Putnam expressed to me how critical it is that we take our next steps in healing and preserving what we have left of Annabelle's GI system, it's never been more vital than it is now ... her body needs help, and immediately, we can see all the signs: malnourishment, ileus, BP. Most importantly, she needs to be relieved of her pain asap.<br />
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He thoroughly explained what would be happening next. I sat there listening, taking very deep breaths and holding Annabelle in my arms tighter and tighter as he spoke.<br />
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<li>Emergency surgery. We can't leave until he see's her in the OR. I thought it would be maybe next week... no, they scheduled Annabelle for first thing in the morning, we will arrive for surgery at 8:50am. </li>
<li>He will scope her esophagus and stomach to take biopsies and see if the disease is present</li>
<li>Dr. Putnam will then next build Annabelle a new stoma (hole) in her stomach that will accept a different tube than the one she has now. She will be moving from a G-Tube that feeds her directly into her stomach.. and she'll be gaining a GJ-Tube that allows us to bypass her stomach and feed her directly into her small intestines while we vent her stomach via G-Tube. This process will be quite complex as she's never had a GJ before and we will have to figure out the best placement and sizing of the tube.. not to mention recovery will be excruciating and a new raw stoma will take months to heal.</li>
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After surgery, we have to remain in Cincinnati for at least a day to ensure the GJ Tube stays in place and doesn't become dislodged from her intestines (apparently this can happen as recovery is typically painful and involves retching and vomiting when beginning feeds for the first time.. all that stomach muscle movement can cause the J-tube to move into the wrong position). <br />
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From there we wait for biopsy results to decide our next steps.. we will move in one of two directions depending on what they reveal:<br />
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<li><strong>Biopsies are clear and the Esophaghitis is not active</strong>. This means the pain is most certainly coming from other parts of her GI system and we need to determine what's going on. In the meantime, she will be fed 23hr x day by J-feedings and also hooked to her G-tube for venting. She will be allowed very, very little by mouth (for comfort only) as Dr. Putnam does NOT want her stomach being involved in the nutrition process.. her gut needs to heal and the only way to do so is to stop using it. This means, we don't want anything dropping into her stomach = nothing can go into her mouth.. however, for quality of life purposes, we will allow her to comfort enjoy very little but nothing substantial and nothing that takes the place of her daily nutrition needs.</li>
<li><strong>Biopsies show elevated eosinophils and an active disease</strong>. This indicates something that has been in her diet for years has suddenly taken a turn and set the disease off. We will be forced to remove everything from her diet and she will not be allowed ANYTHING by mouth. This could be anywhere from 6mon-year before we would be allowed to feed our daughter again. Regardless the outcome of biopsies, she will still be hooked to a feeding pump 23 hours x day. </li>
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Our hearts are broken for our little girl. Her favorite thing are her snacks and enjoying a bowl of pasta with us.. how do you tell a 5 year old that she can't eat anymore? We've been thru this before when Annabelle was 18mo old, and while that was painful, it seems a world different than right now. My heart shattered. There goes birthday parties and bringing our own special, safe cupcakes that I keep prepared in our freezer. There goes popsicles by the pool. There goes family dinner nights and cooking in the kitchen together.<br />
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She's gaining a new surgical hole in her stomach.. there goes the pool for most the summer. She can't play in any yucky water when she has an open would on her stomach, let alone when she's hooked to a feeding pump for 23hr x day. There goes gymnastics. There goes quality of life as she knows it. <br />
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I called AK while we were still in the hospital and told him the news. Together we cried. We knew this day may come.. we KNEW how dangerous and ugly this disease is.. we knew we were blessed to have as much in our diet as Annabelle does, but we definitely didn't expect this news, this week. I wouldn't have come to Cincinnati alone if I had an inclination this would happen. AK and I discussed for hours the thought of him flying to Ohio to be with us so I could have help and Annabelle can have her daddy, but almost $600 for a one-way flight isn't realistic for our family. The best we could offer is numerous FaceTime chats.. .. .. even though they all involve tears. <br />
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AK is telling Madelynne tonight what has happened and once she is in bed, together he and I will tell Annabelle about tomorrow. I don't have the heart to tell her, I don't have the words to explain why life is so unfair to this little girl, I don't have the strength to look into her tear-filled eyes when she realizes she is about to have her 29th surgery and won't be able to eat again. <br />
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Days when I think I am strong, life sure knows how to knock me right back down. Weeks when I feel like I start to have a grasp on things, the rug is pulled from under my feet.<br />
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Moments when I feel like I am losing my world... I pick up the phone and have a sympathetic, humble, incredible husband on the other line.. I have two beautiful daughters that have a magical love for one another and we have friends and family all over the country praying for us. Moments like these are the biggest eye-openers that I may ever experience. <br />
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Today, right now, I feel absolutely all alone and unable to do anything to save my little girl. I don't know how to fix it all.. I am momma and I am supposed to fix things and I can't. I don't know how to make the pain go away, I don't know how to make the disease stop, I don't know how to soothe her confused broken heart. I don't know how to comfort my husband from hundreds of miles away. I don't know how to take care of myself and eat while my daughter watches me. I don't know how to think straight... I do know how to pray and plead for you to keep us in your thoughts. I do know how to take a long shower where tears are allowed to fall without judgment and pray for a better day tomorrow.<br />
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Surgery is scheduled for 8:50am. Please, I beg you, say a prayer for Annabelle. Say a prayer for the guidance of our doctors as he permanently alters her failing body once again. Pray for relief from the pain that she has been enduring for months and pray for immediately help of the pain she will endure while waking from surgery tomorrow. Pray for AK and I as we figure out how to navigate life's shift once again. Pray for the strength, patience and momma love that it will take from me to drive her home from Ohio when we finally pack up to head East. Pray for sweet Madelynne as her little soul will be consumed with worry for her baby sister. And most of all, pray for Annabelle, pray she finds her smile again soon after we tell her this news, pray she isn't in much pain, pray she understands as best as she can..... and selfishly, I ask, pray she doesn't blame me :(<br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com4tag:blogger.com,1999:blog-6582560550294418738.post-20201131570458459872017-05-19T06:42:00.000-07:002017-05-19T08:38:42.695-07:00GI has completely shut down<div>
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<i>I have attempted to write this update for almost a week now, and each time I sit down and reflect on what is happening, my heart shatters and I slam my phone down. Please bare with me as I very quickly update you guys on what's going on with our sweet Annabelle.</i><br />
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<i>Essentially, all we know right now is that her GI system shut down for 6 days and is not working properly any longer. It is not moving contents from her stomach to empty, nor is it emptying from the bottom. Everything in between is largely swollen on xray and her tummy is severely distended to the sight and touch. They are labeling this condition as an ileus.. which gives absolutely zero indication as to why this began or how to fix it, it just explains what's happening.. "GI shut down"</i>.<br />
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<span style="font-size: large;">Monday</span> Annabelle woke with a high fever. She had complained of feeling yucky around 3:30am, so when she woke with a fever I decided we would take her to the pediatrician. We landed an appointment at 10:15a and tested positive for strep throat, although her throat wasn't red and she didn't have any complaints, so hopefully we caught it early. I filled her prescription and she spent the afternoon snuggling in bed and resting. Each time she would try to eat, she would begin retching (dry-heaving bc she cannot physically vomit).<br />
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<span style="font-size: large;">Tuesday</span> was a much better morning. She woke for the day without a fever, happy as a clam and bouncing around the house. With barely 24hrs of an antibiotic, she was already feeling much better. By noon she was ready to try to attempt eating something and I gave her a few edamame .. she slowed down. She laid down quickly, complained of tummy pain and then began retching again. I thought perhaps her fever was returning and she was feeling crummy from the strep.. so I gave her a dose of Motrin and encouraged her to relax a bit.<br />
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Within the hour, everything changed and began to spiral downhill. She became extremely weak, each time she would try to walk her legs would buckle. Her body was retching every 10-15 minutes and then her legs began to hurt. At first they were just crampy, but then she started to cry as she would squeeze her thighs and calfs in her tiny hands and look at me desperately for help. They started to tremble and I told her to stand up, perhaps the circulation was making them ache, growing pains(?)<br />
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She continued to cry that they were hurting and they continued to tremble harder.</div>
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My mind started to race in two different directions. Initially, I wanted to chalk everything to strep / lack of eating / antibiotics and keep seeking rationale as to what was happening. And then the other side of me went into doctor-mom mode and I found myself watching her from a distance so I could collect every bit of information as to what was happening....<br />
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<i>I hate when I turn into this woman, I think I scare myself as much as I scare her while she watches me assess her from a distance. When you've been told for years and years that no one can figure out what is wrong with your child, and doctors have even accused you of making things up, it's hard to rationalize what is happening. I never want to hurt Annabelle and over react, but I also don't want to miss something and not seek help at the right time... our journey together has made this timing and decision making quite muddy. So I watch, I assess and I collect all the information and I (literally) write it down so I can process what is going on:</i> <br />
<ul>
<li>retching</li>
<li>trembling</li>
<li>fatigue that is getting worse by the minute</li>
<li>extreme tummy pain</li>
<li>leg pain and involuntary quivering muscles</li>
<li>pleading Annabelle "Mommy help me, please!" </li>
</ul>
... something wasn't adding up right and it sure wasn't in my head. All I knew is that when Annabelle spirals out of control at rapid speed, something is wrong. That was about the ONLY thing I knew for certain, that this was getting worse by the minute. As unpredictable as she was behaving, I didn't want to see what was next. From the first signs around noon, it was about 2hours before I threw in the towel and loaded her into the car to head to the hospital.<br />
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By the time I navigated our back roads and made it to the interstate, Annabelle was 'asleep'. I called her name a few times and reached behind me to pat her leg and she wouldn't wake. Perhaps she was just exhausted from the two hour marathon of retching and pain? I parked in the Emergency Parking Lot at St. Mary's and picked her up from the backseat. She was asleep....... and she was covered in stool and urine. She was clean prior to leaving our house bc I had changed all her clothing. My heart sank and I quickly loaded her into her wheelchair where she flopped from one side to the other as we entered the ER.<br />
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From here things moved quickly. Annabelle was now conscious but not very coherent. She had a hard time following you with her eyes around the room and she appeared utterly exhausted. We concluded she had likely suffered a seizure in route to the hospital which explains the involuntary loss of stool/urine. Another thing I learned is that, similar to migraines people will see stars prior to the migraine hitting, experiencing leg and joint pain is a premonition your body gives prior to having a seizure. Interesting, huh?<br />
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We took her to xray almost immediately and scans showed an ileus. Her intestines and guts were visibly swollen. After she began to wake a bit, we encouraged her to eat a little something.. we started with a popsicle, two licks and she wouldn't touch it. We tried apple juice, she had drank enough to wet her mouth.<br />
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The doctors joined us and informed our family that Annabelle wouldn't be going home any time soon. They wanted to admit her until they could resolve what was wrong and allow the ileus time to recover. We were taken upstairs to the pediatric floor, met our new doctors around 1030-11pm and began our hospital routine.<br />
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<span style="font-size: large;">Wednesday </span>was tough. Annabelle was very weak and the doctors were hesitant to allow her to have anything orally, as no one quite knew what was going on. While I continued contacting Cincinnati Children's Hospital and our team there, Annabelle's nurse cared for Belle in our room and brought comfort and normalcy to such a chaotic couple days.<br />
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The first agenda Wednesday morning was to determine why she had endured a seizure and if so, what it was caused by. They did an EEG and Annabelle handled it beautifully. I give a lot of credit to the tech that performed the EEG and also the extreme fatigue Annabelle was under.. had she wanted to fight, I don't think she would have even had the energy to do it anyway.<br />
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That evening, AK and I felt it was best to allow the girls to see one another. Madelynne carries so much anxiety and worry about her sister on a daily basis and situations like these really manifest in her poor mind and heart. Annabelle wanted her sissy for comfort, and our entire family honestly just wanted some time together. After AK and Mady had dinner, they visited us in the hospital. Mady brought Belle multiple goodies from the house to play with and she cautiously climbed in the bed with her as they watched a movie. While those two girls can fight like cats and dogs some days, the love and understanding they have for one another is nothing short of unconditional. They need each other, just as I need my husband and our family needs one another. Daddy and Mady stayed until well past bedtime and we all snuggled watching TV until we finally said our prayers together and hugged Goodnight.<br />
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<span style="font-size: large;">Thursday</span> we met with the Neurologist that discussed the results of the EEG. Fortunately the test did not show signs of a seizure nor could they initiate more seizure activity during testing. None of us knew why Annabelle suffered another seizure out of nowhere, but we did all decide that we would not move further with seizure medications, as we have no clue what provokes them to start with. (meanwhile I am internally SCREAMING <b>"This is why we need a diagnosis to explain these things!!"</b>)<br />
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Thursday also marked the 5th day since Annabelle last ate any food / tolerated a formula feeding. We were growing more and more nervous by the hour that her system wasn't recovering. And while the nutrition side is important, the lack of nutrients also started to drop her blood pressure. By that afternoon her BP was 83/52.<br />
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We encouraged her to eat. We ordered chicken broth, applesauce, ice cream (sorbet), popsicles, apple juice, jello . . . she wouldn't take more than a half taste of anything. By late morning, we spoke with the doctors and discussed our plan bc I needed some clarity for what they were doing, "She needs to start eating. Once she can begin to eat and prove that she can keep enough food and formula down, we can go home." Belle was becoming restless, she wasn't feeling well but she wanted to be home. The hospital's plan was only to treat the acute reason she was admitted and send her home, so my focus became "let's do what we need to get out of the hospital so that we can get to Cincinnati and determine what's happened and why so we can fix it."<br />
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<a href="https://lh3.googleusercontent.com/-buRESUadNuU/WRUS5vl_7oI/AAAAAAAAFOw/Hh0LUXhxwYY1-4rUS6pfCbv33S4kTFKqQCHM/%255BUNSET%255D" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" src="https://lh3.googleusercontent.com/-buRESUadNuU/WRUS5vl_7oI/AAAAAAAAFOw/Hh0LUXhxwYY1-4rUS6pfCbv33S4kTFKqQCHM/%255BUNSET%255D" /></a>I asked if we could begin tube feedings. I didn't like the pressure that everyone was putting on Annabelle to put food in her mouth when subconsciously she was terrified of what the food may do to her. She was scared and the threats of "If you don't eat, you can't go home" just didn't seem fair. She was upset as we were asking her to do something that she knowingly *may* cause her severe pain. I say 'may' because we didn't know now, 4 days later, if she would still be in pain.. perhaps the food would digest and she's just too scared to try? We've all been sick with a tummy bug, I get it.<br />
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That afternoon, we started her on a diluted 3/4 pedialyte 1/4 formula feed via pump at a rate of 30mL / hour. (Translation - ridiculously slow. On a good day, Annabelle can tolerate a feed at a rate of 150/hr or better). Within about 20min of beginning the tube feeding, she began to feel nauseous so we asked for Zofran. That hardly touched anything, Annabelle went from being giggly and silly, sitting up in bed to rolled on her side, white as a ghost and silent in pain. We called our nurse who paged the rest of the doctors and they came in to see her. Everyone agreed that something was wrong for a little girl to spiral this quickly downhill within 45min of beginning a very delicate feed. Our GI doctor performed a few very uncomfortable tests on Annabelle as we held her down and then concluded that we needed to stop all feeds and prep for the next morning. He was convinced she had some type of abdominal obstruction. In order to perform the dye/barium test, she would have not been allowed anything on her stomach for 6hrs. In addition, if we did find the obstruction, we would need an OR team available to perform the work of fixing it. Therefore we all decided to let Annabelle rest for the evening. We would snuggle and spend time together and first thing in the morning they would send her for the test and we would move from there.<br />
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<i>The night was difficult. After AK left, my heart and mind raced as I laid in the bed beside that sweet baby girl. She was getting so big. When this began she was a tiny baby that was helpless and couldn't talk but would watch me with the biggest eyes and plead for me to help her. It was heartbreaking. Now I lay beside a growing almost 6 year old little girl that can verbalize what is going on. I always thought it would be easier when she could "tell me" what's wrong, but it isn't. She still lays beside me helpless and she still watches me with the most beautiful big eyes but when she asks "Mommy, why am I sick? Why can't the doctors fix my boo-boo's? Mommy help, please!" . . . I am speechless and find myself more heartbroken then ever. I've come to realize that no matter what age or stage, no matter what circumstance whether it be the day before a surgery or a sprained ankle, this parenting business is always full of an aching heart that we can't do more for our babies. So that was my prayer Thursday evening, for understanding, patience for myself, grace in all that we have positive surrounding us and peace that I am doing the best I can for my daughter with all that I have. </i><br />
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<span style="font-size: large;">Friday</span> morning began early for me as nurses were in and out of Annabelle's room like a revolving door. Fortunately, Belle remained asleep for most the chaos. I didn't want her to wake until daddy arrived and they were ready to take her for testing. Shortly before 9am, we moved downstairs to Radiology where Annabelle began the contrast test.<br />
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She did a wonderful job. For as much barium they put thru her tube into her tummy, her complaints and discomfort were minimal (thank heavens to all the drugs we gave her prior!). The test should have taken just over an hour.. Annabelle's took approx 4 hours.<br />
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Later that afternoon, the GI doctor joined to tell us our prayers were answered and they did not find any signs of an obstruction. However, her GI system was still moving at a snails pace, but at least it was starting to move. We agreed to give the slow feeds a try once more and see what happens during the night. Once Annabelle went to sleep, we gave her more nausea meds and began a very slow, diluted/formula feed again. I was eager to start getting nutrients into her body as her blood pressure was still continuing to drop by the hour. Friday afternoon she was down to BP 67/38. She couldn't sit or stand much without becoming symptomatic. This was Day 6 of no foods and hardly sitting up or moving.. something needed to change quickly. I prayed harder.<br />
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<span style="font-size: large;">Saturday</span> was the day Annabelle finally woke and when the nurse arrived she said on her own, "I am going home today and Mommy's taking me to Jumpology!" (cue my shocked face! "Um, What?!<br />
haha). For the first time she was very perky and happy. She was sitting up in bed and eager to pick out new movies and do a craft together. We had friends visit us Saturday and we were so, SO happy to show off how well we were feeling. Our doctors still were not comfortable letting Annabelle leave until she could prove she can eat a bit on her own. She drank and ate a very, very little but I assured the staff that I was comfortable with the amount she was eating, as long as she was tolerating her tube feeds. They trusted my knowledge of my daughter and our plan of care for her while she was home.. before we knew it, they were preparing the discharge paperwork.<br />
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By late afternoon, Annabelle and I broke free from the hospital. We came home and took the hottest, best shower of our life (first shower in 5 days, gross). We put on jammies, and the entire family crawled into bed together to watch a movie. Boy had we missed being home.<br />
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Annabelle is stable at this point but not well by any means. Her BP is still low but is improving daily and her diet is still very low but she is tolerating slow feeds. We have no idea why her GI system mysteriously stopped working for 6 days, but we are headed to Cincinnati to our team to hopefully find some answers.<br />
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While inpatient at St. Mary's in Richmond, nearly every doctor we met explained their concerns for Annabelle being so globally undiagnosed. The words stab me in the heart as I understand the urgency for these answers in an effort to help my daughter.. but we simply can't get them. I explained that I have appealed the insurance denials in every avenue I have found and still, they will not be part of testing. The doctors in Richmond were quite honest in their speculation of Mitochondrial Disease, which is one of our biggest fears. I recognize and support their thought process on why they believe Annabelle may be suffering from Mito. We had many long conversations with the doctors and I asked most everyone "Do you have any advice for me on how to keep fighting for these answers? Perhaps a different avenue? A trick or secret that I haven't explored?" We did get some great advice:<br />
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<ol>
<li>Instead of continuing the Genetic Testing thru our Geneticist, perhaps have her Neuromuscular Doctor request the genetic testing? Sometimes it looks like a geneticist is simply nosy whereas a different doctor is requesting the test for a specific diagnosis. (Of course we have everything documented from every single doctor on her team, but maybe the top name being "Neuromuscular" could help?)</li>
<li>In response to insurances denial reasoning "<i>Medical studies do not show that this test improves health. For this reason, it is investigational and not medically necessary". </i>The doctor in Richmond said that our physicians need to respond by "it may not improve her health, but it will provide clarification and explanation to her health's progression. Without this diagnosis, the patient will continue to undergo testing, prolonging the need for multiple insurance claims etc. (half of me fears this is the goal of an insurance company.. they know they can make the most money off Annabelle if they keep her sick vs helping her get well)</li>
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The team in Cincinnati is currently reviewing the medical records and notes for Annabelle that took place during this admission. With those they'll help us develop the best team of resources when we arrive in a few short weeks. We don't know what to expect yet beyond a fleet of testing.. but I will prioritize finding a different route for genetic testing while we are there. This trip has the potential to be quite comprehensive, so well take any and all well wishes you can share!<br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com3tag:blogger.com,1999:blog-6582560550294418738.post-74246270402319105192017-03-30T09:40:00.001-07:002017-03-30T12:03:57.053-07:00Our Journey for Answers ...There are truly no other words to describe what happened the beginning on January. It's been years since we've seen Annabelle crash that hard and fast before, I was scared to death we were losing her as each and every system started coming down with one another.. her team panicked, her nurse was scared, and mommy and daddy were motionless and terrified. <br />
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Annabelle had relapsed, hard. <br /><br />
In November, we introduced her to pork (bacon, sausage, tenderloin and ham). When her body began to respond to the new protein, it started attacking itself. We didn't know what was happening until it was too late. Annabelle has lived a life of pain, so for her to complain of hurting is nothing unusual. <br />
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Around Christmas she got worse.. shortly after Christmas she began crashing and we started watching her body slow down. She couldn't run or play, she could hardly stand without falling or being dizzy and her blood pressure began to show signs of distress. Annabelle stopped eating.. we bumped up her tube feedings. Then her pain became so violent, I was calling Cincinnati almost every day pleading for an appointment or some type of guidance to help her. Minutes felt like hours and days felt like an eternity. Once it got to the point we couldn't even send her to school as she could hardly stand, move or cry - her team began to weigh whether or not we needed to admit her to a local hospital or flea towards Cincinnati Children's. We decided late that evening that we would find the earliest flight and by the next morning, Annabelle and I were in route to getting her the help she needed. <br />
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January is hard to reflect back on. I've wanted for months to share with you all what happened during those weeks in the hospital and following during her recovery but the words are hard to find.. and sometimes, just not expressing them is easier to mourn what's happening to our daughter. So I thank you for understanding. It isn't often that I throw in a towel for complete privacy on Annabelle's Journey (although I don't share nearly as much as it seems sometimes), but during this time - I haven't been able to process what happened enough myself as mommy, let alone find the appropriate words to share. <br />
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That being said and my heart full of gratitude for your understanding - I do want to share where we are now. <br />
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Annabelle is still recovering from the relapse. It took months for her immune system to improve. During that time she was left susceptible to every germ and virus in the county.... and she caught it. With every illness, we held our breath. Knock on wood, she has been healthy for a few weeks now finally and we are counting our blessings. <br />
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While we navigated the waters of illness after illness, we've also had some meetings with her school and phone conversations with her medical team. <br />
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<strong><span style="font-size: large;">SCHOOL</span></strong><br />
Unfortunately, the physical demands of a relapse take a huge toll on how Annabelle performs academically. When she's in pain, when she's fatigued etc she cannot and does not concentrate or focus. When your body works so hard fighting for your health, developing new skills, concepts and learning a world of new things becomes very secondary as a priority for the brain. Our Neuropsychologist explained in great detail the direct correlation between chronic illness and learning. As a result, we are seeing the affects in how Belle performs academically. While her health is a top priority, normalcy and being a child has also always been a priority for us too.. we want our daughter to excel in school, at least to a point that she doesn't struggle, frustrate and begin to dislike school. I don't need to go on as to the importance of prioritizing school / structure / learning / friends etc, but I did want to share that at this point, AK and I were left with some big decisions in how we will balance her health vs education.<br />
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Annabelle needs as much classroom focus and attention as we can give her. For that reason - we decided to cancel all our food trials and any testing or doctors appointments until school is over. She also needed the medical break and we didn't think her weak immune system should be pushed much more right now. <br />
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<span style="font-size: large;"><strong>MEDICAL</strong></span><br />
Because we've decided to cancel food trials, that leaves Annabelle with very little protein in her diet. Protein is critical and our next food trial was going to be trialing another form of protein (she choose fish! ) So now, that option is gone and were left continuing to balance a weak diet. At the same time, her system has been having a harder and harder time digesting Elecare (liquid medical food we tube feed her with). We're at the point that we dilute the Elecare each night before bed, otherwise she will spend most the night crying in pain from a full belly. We're not doctors so clearly we have no idea where the pain is coming from, but diluting the formula seems to be providing some relief so we're going with it. <br />
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She is also having a more difficult time getting rid of gas in her GI system. We haven't had to "make bubbles" (we do this by connecting her g-tube to a long 'straw' like contraption called an extension and then a 60cc syringe. Once we remove the plunger from the syringe, there is an open passage for any air to escape her stomach thru the tubing.) Annabelle has a Nissen, where her stomach is sewn snug around her esophagus, preventing her from being able to burp or vomit. For a while she was doing better with her body filtering the gas but recently a lot of gas is getting stuck in her tummy and were required to extract it by tubing multiple times x day. <br />
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We have a few more things going on.. such as the weakness in her legs is getting worse and we've noticed her struggling in new ways that we haven't seen before. Her depression is getting harder to manage (hurry up summertime and pool weather!!) and her anxiety is skyrocketing but all in all.. it's just another day with our Annabelle.... and not to mention a 5yo old going on 15 ;)<br />
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<em><span style="font-size: large;">... so that brings us here.. to the purpose of today's post.. the update that literally has tears dropping from my chin as I type..</span></em><br />
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Insurance has again denied all of Annabelle's Genetic Testing. We received our denial letter a few months ago and I immediately appealed. I have appealed thru my employer with HR, I have appealed directly with the insurance company and we have had doctors in the hospital contact and appeal the decisions as well. Despite our frantic efforts at fighting this decisions, we are at a dead end in Annabelle's "Answers for Annabelle" Journey and simply don't know what to do. <br />
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As parents, we are grieving. <br />
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- We are grieving the absence of a diagnosis that we prayed would give us some answers for our daughter.<br />
- We are grieving the heartless decisions made by a corporate health system that looks at our child by a dollar sign and not a human needing help.<br />
- We are grieving the loss of words when our children ask "Will the boo-boo's go away?" "What will make Annabelle better?" "Will she ALWAYS be in a wheelchair?" "Is Jesus going to let Annabelle die?" "Why can't the doctors fix it?"<br />
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We don't have answers for family.. friends.. doctors.. the school during an IEP / 504 meeting. We don't have answers for our children, we don't have answers for recreational sport teams, we don't have answers for one another as we look into our spouses dark eyes of confusion and terror. <br />
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<strong>We are mourning as a family. </strong><br />
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<em>Genetic testing is astronomically expensive and is not affordable for us. The purpose of this blog is to share Annabelle's Journey with those that love, support and pray for her as she moves mountains and overcomes some of the most heroic things a child never should have to. I won't share finances here, but I will share this: supporting, caring for and fighting for a chronically ill child has to be the most financially destructive path a family can endure. We make the best decisions to align our children's lives in a good school, good home, healthy food, kind friends and warm church - those are the foundations that will hold us together regardless what lies ahead. Everything else is to support Annabelle, and let me just say, she has drown us. She is worth every single penny... bc heavens knows she's taken it, but there becomes a balance in which we still have to preserve what is best for our family. Every trip to Cincinnati costs our family no less than $1,000.. last year we traveled to Ohio eight times. EIGHT. That does not include the out-of-pocket wheelchair, medical supply, endless prescriptions, etc. I don't care how much money you make, I don't know anyone that can afford this financial burden.</em> <br />
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That being said, we cannot afford to pay cash for Genetic Testing on our daughter. Without this test, our Journey to finding our official diagnosis has ended. . . and we are broken. Numb. Hurt. Utterly terrified. Confused. Nervous and just.. broken.<br />
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Our fight for keeping our daughter healthy, comfortable and stable is not over. We will continue to do that each and every day as her parents. We will continue all our care in Cincinnati Children's Hospital as they are truly the best of the best when it comes to managing her Eosinophilic Disease. We will continue to blindly navigate the muddy waters when she relapses, even when we don't know why. We will continue to react and fight when her body mysteriously crashes. And with every step in the future, we will pray that God leads us to safety with our daughter, even if we don't have answers or a 'user manual' on how to keep her healthy. Our faith is being tested but it's getting stronger. Our family is broken but our snuggles are tighter. Our worries are heavier but our priorities are more clear. <br />
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I will continue to update and I hope those that have always loved our sweet Annabelle will continue to pray for her and our family. We are blessed to have you walk this journey with us. <br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-63611651943569670512017-01-07T20:34:00.002-08:002017-01-07T20:34:20.729-08:00Emergency Trip to Ohio.<i>"Hope is not pretending that troubles don't exist. It is the hope that they won't last forever. That hurts will be healed and difficulties overcome. That we will be led out of the darkness and into the sunshine."</i><br />
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We're in the midst of our first food trial in years. Annabelle chose to trial Pig (pork, ham, bacon), we are thrilled to have the opportunity for another protein in her diet. When we agreed to do a food trial, we made a compromise and promise to Annabelle that this would be our last trial thru her disease until she is much older and she can make these decisions for herself.<br />
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In a perfect world, we would want so much more for our daughter. We would want her to be able to enjoy a birthday cake, or eggnog, or a cookie and trick-or-treating, we would want her to be able to run, skip and swim all day without pain, we would love to allow her to play in the chick-fil-a jungle gym at Christmas or attend an inflatable bounce-house birthday party without wearing a face mask. Then again, in a perfect world we would also wish for Madelynne to be more flexible so she could do the splits like her sister or have a dash more common sense so she doesn't walk into walls or trip over air (laughing, but that's so my kid lol) - reality is that we have and love our children just the way they are. We wouldn't change their personality, abilities or limitations for a second but we do pray for a happy, healthy and pain-free childhood. Our only goal in raising our girls are to keep them as healthy, safe and loved as we possibly can and let God do the rest.<br />
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That being said, I do want to share that our family is coming to such a peaceful place with who and where we are. I am so happy to say that - wow - I literally just exhaled. For years it's felt like we have swam against the current in fighting for our daughter. And we have! I have stood toe to toe with Physicians in more hospitals across more states than I care to count. Together as a family, we've spent more holidays in a hospital bed than we should, I've wiped more tears and held down a baby like no one ever expects to. AK and I have spent so many sleepless nights, ridden with fear and worry for our family and it's all finally taken us to the place we are today. Those fights, tears, sleepless nights, money, heartache and brokenness was all to carry us here... I wouldn't change a single thing to be where we are. In peace with the brokenness, finding grace thru the pain and seeing all the blessings that God grants yes.<br />
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The amount of clarity in our lives that I parent with now is priceless.<br />
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I wanted to share that insight of our lives to bring you to where we are with Annabelle and in our family today.... let's start with the least painful:<br />
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<span style="font-size: large;">Insurance has denied all our appeals for Genetic Testing.</span><br />
The denial letter states, <i>"Based on the review of the information provided to us, the service you have requested (Exome Genetic Testing) is considered investigational/experimental and is not covered. Your doctor has requested genetic testing for you and your mother due to your medical conditions. Medical studies do not show that this test improves health. For this reason, it is investigational and not medically necessary. This decision does not mean you cannot or should not receive this service. But, this decision means that if you do receive the service, it will not be covered on your medical plan."</i><br />
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My heart drops for our daughter. True, Genetic Testing IS experimental, but it is the only way to know what is genetically wrong with Annabelle. We have spent years, tests and so much money in preparing for this Genetic Testing, we were so close and now insurance will not participate :( Basically, they don't want to play along because we cannot guarantee the test will find anything (we're 99% certain it will, but we have to look first!), and if we cannot guarantee it will find something, then we cannot guarantee it will change Annabelle's Plan of Care.<br />
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I CAN guarantee though, that having this information, and the ability to finally label and understand what is wrong with our baby girl, we WILL be able to improve her quality of life, care, we will be able to recognize what helps/harms her system. We will have a label for doctors that opens up so many doors to providing her the best treatment possible. We will know how to advocate for her, find her the best doctors that specialize in her case, and not walk blind into the unknown world ahead!<br />
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<li>Tiny example: Insurance denies our wheelchair for Annabelle. Why? Because her only diagnosis of Eosinophilic Esophaghitis, a GI Auto-Immune Disease, does not impact her ability to walk. Absolutely true(!), but the undiagnosed side of Annabelle DOES impact her ability to walk, muscle strength, endurance, fatigue etc. None of those things are associated with EoE, but Annabelle experiences all of them. And until we have a diagnosis that reflects ALL of Annabelle, she will never get the services she needs to live the best life she can - aka: wheelchair. So for now, we pay cash.... bc we don't have a diagnosis... clear as mud?</li>
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We are still fighting hard for Genetic Testing though. Without this test, we are practically at a dead-end in her care and progress moving forward. On the other side of this door is an answer that has the potential of saving our little girl... I just have to find another key to getting it.<br />
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<span style="font-size: large;">Now for the unpleasant news that I didn't want to have to share.. Annabelle's body is crashing. </span><br />
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Everything had been going so well! She had been enjoying life so much in fact, that I've remained terribly secretive in sharing the good news for hopes of not jinxing it (haha, a little superstitious, I am). Until week 7-8 of her food trial, we had hopes that she would be gaining pork into her diet without issue.. Unfortunately, right before Christmas, the progress came to a screeching halt.<br />
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The night it all began, Annabelle was making Christmas cookies with her cousin, sissy and friends.. in the midst of the fun, she came to my side with eyes the size of quarters and told me something was wrong and her boo-boo's were hurting again - I assumed her belly was bothering her from dinner or extra sugar, but she wouldn't leave my side. She curled in my lap and I could feel her exhales and moans - with friends and neighbors surrounding me, my mind raced and instinctively I knew "this is it.... she's turning a corner.. hold on mama, it's begun" - But that's the worst part of this disease and the rest of Annabelle's body. When she begins to spiral away from us, we have absolutely no clue how to rescue her and stop the painful manifestation. I gave her meds and started removing pork from her diet in hopes that the pain would start to subside. Days before Christmas, I called her team in Cincinnati and reported what was going on. They scheduled us for a scope at the end of January and we all prayed she would improve so that we could complete the 12wk food trial and have a clear answer if we can keep pork in her diet (we so desperately wanted this source of protein).<br />
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<i>Christmas service at our church, Atlee Community. </i></div>
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Christmas was a struggle for Annabelle. She wore a smile everywhere we went, but she sobbed in pain every evening. After the Christmas activities were over, she curled on the couch with mommy, daddy and sissy, and we didn't leave the house. For nearly a week straight it was Bathtime.Jammies.Bedtime.Snacks.Bathtime.Naptime.Bedtime.Snuggles. I cautiously watched my daughter from a distance and began to die inside... there is nothing I can do to help her, I have prayed so hard, but damnit this disease and whatever else plagues her body has reared it's ugly head and again torments our family! I am so helpless in this fight, and it kills me.<br />
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Around New Year's, Annabelle was again laying on the couch watching TV. I went to her side to check on her and noticed piles of hair around the couch. I immediately snapped, "Annabelle Grace! Did you cut your hair?! Where did you get scissors? Where did this hair come from?!" She was so surprised and disappointed as she cried back "I don't know mommy! I didn't cut my hair! I promise!" Her words sounded innocent so I cleaned the mess and went back to household chores.. sometime later, while standing in the kitchen, she began to have another bout of pain where she started ripping clothes from her body, kicking the blanket off and then . . . . ripping her hair out while crying. My stomach sank so fast I thought I would vomit. Immediately after consoling her, I phoned Cincinnati and put in a mayday call to get something started about getting her help asap.<br />
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Within days (this past week) her body began to shift again and her cardiovascular system began to show signs of dehydration beside being overly hydrated. Between her heart rate continuing to rise (Pulse: 103) and her blood pressure dropping ( BP: 81/55 ) more and more with each day - we knew something was happening to her little system. By Thursday, her doctor instructed us to stop giving her pork and take her to the Emergency Room immediately. Annabelle's nurse and I have been watching her like a hawk. I spent most the week at home with Annabelle where we could keep a close eye on her changing little body.. her nurse and I agreed to continue working hard at home to keep her hydrated and try to get her BP up on our own to avoid the hospital. Meanwhile, Annabelle went onto three Physicians stand-by lists for the next available time slot for an Upper and Lower Endoscopy. We waited, we prayed like crazy and waited....<br />
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By Friday, things continued to get worse. Her blood pressure lying down was 100/58, pulse 78 - pretty good for Annabelle :) However, while sitting her BP was 94/60, pulse 89 and once she stood up it dropped to 85/44 and pulse 92. Each time Belle stands up, she tries to vomit and will seldom fall back down. She's screaming in pain, refusing a lot of foods, coughing and choking on everything and generally declining. By noon on Friday, I spoke with our team again and they called back within the hour - We needed to get her Cincinnati as soon as we possibly can so they can treat her right away if she crashes any more. They're admitting her first thing Monday morning and her doctor gained privileges to the OR on Tuesday (not his allotted OR / Surgery day) and we will investigate then what is happening. At this point, sadly we've sacrificed our food trial :( I know, in the grand scheme, it's the least of a concern but in the back on our mind, we really did want this for Annabelle. On the surface, something terrible is happening to our daughter, and we have absolutely no idea where to begin.<br />
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Tomorrow morning, Sunday January 8th, AK is taking us to Baltimore Airport where Annabelle and I will take a last minute flight to Cincinnati, Ohio. The weather in VA has not been friendly this weekend and I don't want to risk the drive thru the mountains, especially in the condition Belle is in right now. Unfortunately AK cannot come with us :( He has to work and stay home with Madelynne, so I recruited my Grammy for the adventure. An extra set of hands sometimes is helpful when I'm alone, so I am looking forward to the help on this trip.<br />
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We do not have a return flight because our doctor couldn't tell us how long he plans on keeping Annabelle... he said she won't be able to come home until we learn, resolve and improve whatever is happening to her little body. My prayers are that we won't be gone more than a week, but heavens knows how long we will be living in the hospital during this time :( As eager as I already am to get back home to my family, I do know that the best for Annabelle is to stay in Cincinnati until she is comfortable and no longer in pain, regardless how long it takes.<br />
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From the bottom of my heart, I offer my apologies for the delay in an update.. I truly wanted to only share good news with our prayer warriors and family for Annabelle. My heart shatters to share this news, my heart sinks with every word of sadness in such a wonderful time of the year. Half our family celebrates the joy of the season as one of our daughters spends the weekend building snowmen with friends and Annabelle returns to a hospital to face her reality .. the reality of a 5 year old, Kindergarten little girl suffering, struggling in pain, unable to balance her body and flying an emergency flight to leave her family behind and head towards more pokes, surgeries, hospitals and procedures where they will inevitably break her spirit and remind her exposed and gentle soul that the world is cruel and unfair.<br />
My . Heart . Shatters .<br />
For all of us, me myself as her mommy, for her daddy that has to say goodbye to his favorite little 5yo, to her sissy that has to spend every night with a soul full of worry, my heart hurts for you that has to read these words and learn once again that all your prayers for this sweet little girl have again gone unanswered.<br />
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I trust God hears them, all our prayers; I do not believe he makes bad things happen, but he allows them to happen in order to teach us and guide us and shape us. I trust he loves my daughter more than I, but it's so hard to remember sometimes. I guess all we have left is to trust that everything will be ok in the end, in the meantime we love her as much as we can, we pray for her comfort and healing, I will advocate for her the best I know how and hope our medical team can quickly and swiftly begin to comfort her body and rid it of pain. I also pray you will continue to keep her in your prayers, keep my little family in your prayers for a safe flight, safe travels and protected hearts as we navigate very difficult waters ahead, while hundreds of miles apart. Thank you all, thank you for loving my little girl as much as we do..<br />
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<i>Annabelle and her cousin snuggles</i></div>
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com109tag:blogger.com,1999:blog-6582560550294418738.post-18991750964159578132016-10-26T08:04:00.002-07:002016-10-26T08:13:22.174-07:00Biopsy Results are Back<em>I can't believe we had to wait so long for our results.. we've never had to wait longer than 3 days and this time we waited 8 days for the final result. Dr. Putnam wanted to make sure they were correct before sharing the findings with us.</em><br />
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Before we left Ohio, we met with the GI team. That Thursday we intended to discuss the biopsy's but they weren't back yet.. we stalled.. we talked, discussed hypothetical game plans, reviewed how Annabelle was doing overall and stalled some more with the Doctor. After a while, we decided that we probably were not going to be able to wait for the results and discussed two plans with Dr. Putnam. <br />
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<strong>Plan 1 - Good Report from Biopsy's</strong><br />
If by a miracle, the biopsy's are clear and she is in remission - we agreed Annabelle deserves a new food and could use more protein in her diet. We haven't been able to consider this for years because we weren't allowed to alter her diet or aggravate her system while we were exploring the genetic testing. Now that the muscle biopsy and DNA extraction is done, we are free to begin life again in managing her Eosinophilic Disease. <br />
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We talked about foods and which would be a good idea to trial. I asked questions like, "If she can have chicken, why can she not have eggs?" The answer, "They are very different types of protein and it's that protein that triggers the disease to activate. Eggs are a top offender of EoE and cannot be considered to be part of her diet for a long, long time, if ever." The more I asked about new food recommendations, the more Dr. Putnam would remind me, "I think you need to let Annabelle decide what she wants to eat". So, so very true. The thought and idea is so fun that she may be able to have a new food! I know she wants one so badly and I would love that for her. If we do choose to trial a new food, she will have to eat at least 4oz of that food, every single day, and then we scope again in 90 days to determine if it is a pass/safe food or a failed trial. So yes, Annabelle will get to choose but it does have to be a smart decision because whatever we add, she will have to consume it daily.<br />
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<strong>Plan 2 - Bad Report from Biopsy's </strong><br />
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We didn't talk heavy about this scenario. If the biopsy's are still bad, Annabelle will likely loose the opportunity to eat and take anything orally again and we would go back to using drugs to help the disease heal. The idea of telling my daughter that she cannot eat anymore is devastating. We have been thru this once already and didn't feed her for 6 months.. it was torture on our family. It uprooted our entire lifestyle and changed our entire family routine. Holidays, celebrations, dinner and saying grace, movie theatres, birthday parties, EVERYTHING changed. While we know that it may come down to it again as Annabelle battles this disease for the rest of her life, we prayed with everything that it wasn't today.<br />
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We left Cincinnati last Thursday with a lot of information to think about. We left not knowing if we should be thinking and planning for the positive or negative. My mind was so happy at the idea of being able to tell Annabelle her boo-boo's were better and she can eat a new food.. I started thinking about new recipes to add to our short dinner list. I imagined Thanksgiving with a new item on her plate. I pictured her little face lighting up as she tasted something different for the first time. Then my mind would shift... it's equally likely that we will have to sit our confused, broken and faithful daughter down and tell her that she cannot eat any longer. She cannot partake in snack time at school, she'll be in the cafeteria at lunchtime without a meal. I decided in my head that we will not be celebrating Thanksgiving and we would do something fun instead. I listed all the things I need to rearrange, I will remove her snack bucket in the pantry and hide her personalized plates in the cabinet. How will we handle meals in a house of 7 people? How can I distract her for every single meal of the day? How do I explain to her broken heart that she isn't being punished but food just isn't safe for her. She doesn't know ANYONE that can't eat food.. how do I make her believe that she is just like everyone else when she globally isn't?! The anxiety ate us alive. The conversations were so hard.<br />
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Tuesday, October 25th at 12:34pm my phone rang, "Cincinnati Children's CCED" and my heart sank. I knew this was the call and I panicked. In fact, I hesitated for so long that I almost missed the call.<br />
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<em>The words this nurse would speak will change our family monumentally... was I ready to hear it? No. I wasn't. Did I want to hear it? No. For an instant I panicked and my mind raced "I don't want to know... we will just keep doing what were doing.. the idea of good news isn't worth the risk of hearing bad news. We are happy with our limited diet and Annabelle isn't in too much pain. I don't want to hear anything ... I just want to pretend this conversation isn't happening..</em><br />
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Me: Hello...<br />
Nurse: Hi Annabelle's mom! Dr. Putnam just called me and asked that I call you immediately. He's reviewed her results from pathology multiple times and we have news, are you ready?"<br />
Me: (in my mind, NO! DIDNT YOU JUST HEAR ME?! NOOOOO!) ..... Yes, I'm ready. But I only want to hear good news. <br />
Nurse: :laughing: well I can do that for you. Mrs. Bishop, Annabelle is in remission. The biopsy was perfect and showed zero signs of the active disease. It hasn't spread, it hasn't manifested. Your daughter is healthy from an Eosinophilic Gastrointestinal perspective.<br />
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I cried over the phone and then we went back to our previously discussed game plan.. a food trial. I asked what she recommend and she told me what Dr. Putnam has asked. <br />
(side note, Annabelle's 'food' of choice is to have pepperoni pizza. that's her choice when you ask her.... and that's not possible, that would be a trial of beef, pork, milk, wheat and multiple spices... we can only choose ONE thing to trial and a pizza is just not logical lol).<br />
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I asked if she could try milk like cheese, yogurt, sour cream, ice cream etc. Unfortunately milk has such a high failure rate and isn't recommended.. even more, Dr. Putnam won't allow her to try cheese/ice cream etc until she trials 90 days of white cows milk ONLY and can pass via biopsy. Afterwards, she can try the rest of milk based products but again, he doesn't want us to consider it at all. <br />
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His recommendation is to trial pork, and for logical reasons. <br />
<ol>
<li>It's another form of protein, in which we currently only have one (chicken) and she does need another.</li>
<li>It's another meat... <em>I am so tired of chicken</em></li>
<li>It has a high success rate</li>
<li>We get a lot of food options out of pork:</li>
<ol>
<li>Tenderloin</li>
<li>BACON</li>
<li>Ham</li>
<li>Sausage</li>
<li>Pork chops</li>
</ol>
</ol>
We could also trial peanuts because she does not have an allergy. Peanuts will give her a source of protein. <br />
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Through conversation with the nurse, we decided the best idea is truly to consider pork as a trial. I love the idea that it provides a high success rate for passing the trial and also that it opens up a LOT of meal options, breakfast, lunch and dinner for Annabelle. Our meal list of choices are quite limited in our house and I am eager to be able to cook more; pork will provide that opportunity. <br />
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After I hung up the phone, I walked to the bathroom and dried my eyes.. when I got back to my desk, I texted AK and told him the good news.. my mind was racing and I just couldn't wait for the day to hurry and finish so I could go home and tell Annabelle! I went to the store and purchased a card for her and wrote her a letter to tell her how proud we were of her and congratulate her on gaining remission of this disease. <br />
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As soon as we got home, I made the girls sit down and told them that we had news to share from Dr. Putnam. <br />
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Our daughter is in remission. Remission. Oh my God, her little body is healed of the damage brought on by this awful disease. She is not cured, she is still very much suffering from an auto-immune disorder and this moment of happiness could be very short lived. But for our family, this is the best we could have ever hoped for. Our prayers are for comfort, less pain and zero progression of the disease in her body. Our prayers were answered. This celebration is purely a gain of quality of life for our daughter. I am so proud of her, without her commitment to an extremely limited strict diet and persistent prayers, we could have never gotten here. Annabelle is the one that deserves all the credit to this victory. She wears a face mask when germs are around.. without a fight. She washes her hands until they're raw.. without question. She showers daily after school before she's allowed to play.. willingly. She never sneaks food anymore. She rarely cries when she learns she cannot eat what others are.. She doesn't expect birthday cake or shared celebrations with her friends. She embraces a unique bland meal at the dinner table daily. She understands she cannot 'buy lunch' at school like her friends. She doesn't put anything in her mouth she isn't supposed to. She takes her medicine without fight and she never gives up on her faith. Annabelle earned this victory. <br />
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<em>Please know, we are so happy to celebrate this wonderful news but Annabelle still has a long, long way to go before she is healthy. This news is completely different from her genetic testing and global diagnosis that will ultimately help us save her. This news is only 1/10 of her battles, but it's 1/10 of her battle that we are winning! </em><br />
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Mommy, do we have any ham here at home? Can I have some now??? <br />
Yes, baby. Absolutely you can.<br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com4tag:blogger.com,1999:blog-6582560550294418738.post-76459401190834950112016-10-20T06:13:00.001-07:002016-10-20T06:13:48.216-07:00We handed our baby to an anesthesiologist for the 27th time..<div class="separator" style="clear: both; text-align: center;">
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We never, in a million years thought we would be here. At most, we imagined our marriage would suffer the typical strains.. finances, bickering disagreements about what to eat for dinner, not seeing eye to eye on disciplining our children, perhaps job loss etc. But never, did we ever imagine that each and every one of our 'family vacations' would be held in Cincinnati Ohio as we await the moment where we hand our daughter over to an anesthesiologist for the 27th time in her life. Never could I imagine the debt our family would carry, the heavy, grieving, frustrated and broken heart I would wear on my sleeve and the strength this nightmare would offer our family as we stick together. <br />
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But as life has it, and as funny as God thinks he is in his ways... here we are. <br />
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I didn't sleep a wink. At most I may have caught an hour-ish, but it wasn't restful. Every single worst case scenario of the OR would run thru my mind, and as I watched them play out in my head, my prayers would scream louder, "PLEASE GOD! PLEASE PROTECT MY BABY!" I prayed that the sun would finally appear so we could end the loneliness and quiet of the night. <br />
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The girls were awake at usual time, 6ish and I quickly did their hair and began to get them dressed. Mady was hungry and I kept having to remind her to stay quiet as Annabelle couldn't eat so no one would be eating that morning (not in front of her at least). Annabelle knew what was happening, she knew this was surgery day and she was so nervous. She randomly pleaded out "Mommy, can we go home, do we have to have surgery today"...she knew the answer but bless her heart, she wanted to try. When I would explain what's happening, she would cry or pout, but Mady was quick to jump in line to offer a distraction. <br />
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Traffic in Cincinnati is horrible. And since we switched hotels, we are about 30min outside of the city, NOT including Monday morning rush-hour. Needless to say, there wasn't enough coffee to keep my blood pressure from skyrocketing after the day we were already beginning to have. <br />
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AK parked the car with Mady and met us upstairs (they also took advantage of this time to eat their breakfast away from Belle.) Once upstairs, we did our standard vitals and Belle clung tight to this trips favorite stuffed animal - "Tubey Puppy", he's a doggie that we put a G-tube / Feeding Tube into his belly just like Annabelle's. She loves him. <br />
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As we waited for daddy, sissy and/or the doctors to join us in our room for our Genetics consult, Belle hit her fight or flight moment, she pleaded to go home, she begged 'I will be a good girl mommy and use alllll my manners. I promise. I won't have accidents in my undies anymore, please mommy, please can we go home, I don't want to be in the hospital anymore". Her words are still ringing in my head and stabbing me in the chest. I tried so hard to explain to her that she was NOT being punished, that her accidents are at absolutely zero fault of her and if I didn't think this would make her boo-boo's better, than I would surely get us home super fast. But I know these procedures are going to make her feel so much better...... convincing a nervous 5 year old that the long-term benefit is worth the sacrifice of her short-term/now fears = impossible. <br />
I held her tight and fought back the tears...<br />
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Daddy and sissy met us in our room before Dr. Burrows, our Human Geneticist, joined us. When he did... things suddenly took a turn for the worst. <br />
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"I am so very sorry Mr. and Mrs. Bishop, but insurance is repeatedly denying any testing for Annabelle... we can't do the testing today"<br />
And just like that, our #1 goal for this entire trip was stripped from us and shattered. <br />
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Dr. Burrows could see the pain tearing across my face and he tried to talk thru multiple other options that we may have. We spent the next solid hour trying to figure out how to make the genetic testing happen... we came up with two plans:<br />
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<ol>
<li>If Annabelle is admitted after surgery, we will do the DNA extraction at that time and order the testing thru the hospital, coding that it's necessary for her medical situation. </li>
<li>If she isn't admitted, we would draw labs and hold the bloods until we can get a preapproval from insurance, and we would then send the blood to an outside vendor that does genetic testing. </li>
</ol>
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Neither of those options are ideal but they were the best options available to us at the time. I agreed to call Dr. Burrows once Belle was out of surgery and we would determine then what we would do. (remember, we were not sure if she was going to be admitted afterwards or not.. it was all based on how well she did in recovery. Our goal was to be discharged, but now with the genetic testing issue, we were ok with having to stay if it were necessary.)</div>
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The rest of our conversations were around the genetic testing itself and the decisions we needed to make for it. There was such a great deal of information, so here are the highlights that we spent a lot of time discussing:<br />
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What the chances are that we will get answers, even if it means we don't get our final, global diagnosis, would we at least learn something? The very unfortunate and sad answer was, no. There's only about a 25-35% chance we will get Annabelle's answer from this testing.. while the statistic is low, its 25% higher than it was years ago. That being said... Exome Genetic Testing is the most extensive option available now to anyone. In another 5 years, we will be able to perform Whole Genome Sequencing which will provide even more answers, but for now the technology is simply not there. </div>
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This 25-35% chance does improve though when we compare Annabelle's genetics to her parents. When studying her genes, they are looking for any changes that make her different from other individuals - when they compare that specific change to us, mom and dad, they will be able to determine if that 'change' simply makes her a unique reflection of mom and dad or if that change is actually impacting her health. <br />
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By comparing Annabelle's information to ours, we will learn about inheritance patterns, whether or not we passed this condition down to Annabelle, and if so we will learn specifically which parent passed it. It will also tell us whether or not it has the potential to affect any of our other children. <br />
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When being part of Exome Genetic Testing, we are also offered the option of the 56 Gene Screening that discloses whether or not you carry the genes associated with cancers, adult onset chronic diseases, cardiac disease etc. This information is not necessarily what we are looking for to diagnose Annabelle, but if the option to know whether or not in the future if she is predisposed to some of these diseases, we would like to know. Unfortunately, if we choose to learn this information about Annabelle, since they are comparing our genetics to hers, we will also in result learn this information about us. The downside to learning this information, is that it has the potential to make us uneligible for Life and Long Term Care or Disability Insurance. We cannot be denied health insurance of course, but because we've now had genetic testing, we can be denied the other. <br />
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Because there are so many advantages and disadvantages, Annabelle's a minor, and were essentially playing God in some ways of how much information we may potentially learn, AK and I have to be 100% on the same page in order to perform any testing on Annabelle. We decided we were ready. We are ready to learn everything we need to hear to help our daughter... the good, bad and ugly. In another situation I would be making a very different decision, but where our life is now and the necessity of how urgently Annabelle needs answers, we are ready. No questions asked. We will continue to be coached and will have a team explain the results to us when they come in.... I am nervous about those, I am scared to death to hear the words "Annabelle has x,y,z and it was passed down from the mother.." etc. but who knows. I have several months to get my head where I need it to hear whatever is in store :)<br />
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Our biggest challenge is going to be insurance. However if we continue to be denied, we have the option to generate a Letter of Medical Necessity because more than one body system of Annabelle's is being affected. Insurance unfortunately doesn't care and will not pay for the testing just so we can have answers.. they will only pay if we can prove that it will change her medical management (aka more money.. if a diagnosis means she may need a different drug, elaborate wheelchair, etc = medical company and insurances begin to make even more money off Annabelle which in result, they support the idea. It's a sad, corrupt medical world that simply makes me sick).<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike></div>
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Bottom Line that we were strongly reminded, multiple times before we left the visit:<br />
<ul>
<li>If we find an answer, we may not have a treatment. </li>
<li>We can't change genetics but we can alter the way our body reads them to better her body function. </li>
<li>There's a higher chance we learn nothing than learn something; it doesn't mean that what Annabelle has isn't genetic, it's just that were not there yet medically to diagnosis it.</li>
</ul>
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After our genetics appointment, we made our way to admitting and Same Day Surgery. Mady stuck by her sissy's side every step of the way. <br />
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Belle was so nervous but the nurses at Cincinnati Children's are priceless. They treated Tubey Puppy as another patient the entire time.. <br />
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Both Annabelle and Tubey Puppy got their arm bands. Annabelle always has a second red band to indicate all her allergies.. Tubey Puppy had one too that read "Allergic to Chocolate"... bc.. he's a dog.<br />
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Once we were settled into our room, the team began to meet us before the procedure.. this is when the doctors, nurses, surgeons, anesthesiologists etc will come to discuss and confirm one last time our game plan. These conversations are critical and typically where I will sit on the opposite side of the room from my family so the doctors can have my full undivided attention and I can assure everything will go according to plan.. <br />
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1st problem: They had the wrong GI surgeon scheduled for the OR with Annabelle. I immediately stopped our movement and demanded an explanation. I was under the impression that Dr. Kaul would be performing the surgery but apparently, they scheduled one of his colleagues instead. I wasn't happy, mostly because of the sudden change of plans. but I agreed that I would allow him to do it but not until I meet with him personally first and we talk. <i>That's my baby you're operating on, I want a face to face conversation on what you're about to do!</i> And thank goodness for it, because when he came to our room, he was under a completely different understanding about the surgery than what was discussed. He had different intentions in the OR than what we talked about with Dr. Kaul on Friday. I made him call Dr. Kaul in front of me so we could all three be on the same page. . . . 45min later, everything was settled and we were back where we should have been - same plan as before, we would be doing everything just like we discussed last week and the new surgeon was brought up to speed on our expectations. My heart was in my throat at the potential of missing this - what if I were the type of mom that doesn't question everything? what if I were passive and allowed doctors tell ME what they're going to do instead of asking questions? What if Annabelle didn't have an advocate that would speak on her behalf? I am not, NOT giving myself a pat on the back by ANY means, bc this is my child and goodness I don't need a kudos for being her mom - but I am simply explaining the horror and fear that I do have if Annabelle didn't have someone to speak for her. What about ALL those kids and people that don't have their voice in the medical world and don't have someone to speak for them? My heart aches and stomach twists at the thought of what happens to them.. how quickly you can become lost, mistreated, mistaken, overlooked and accidents could happen. We are all people, but just because doctors and surgeons make over six figures a year doesn't mean they don't make mistakes, they're humans. And it's our job to be a solid second set of eyes, especially when it's your baby under the knife. <br />
:stepping off soap box:<br />
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Once the GI surgeon was finished and we were all clear on our game plan, he left the room with a team of other nurses as they had to re-prepare the OR to accommodate all the changes in the plans. That's when we met the general surgeon who would be doing the muscle biopsy. I thought she would be removing only muscle, but actually, she removes skin, tissue AND muscle all the way from the surface into the muscle of her leg. She marked where she would take the sample and discussed what recovery would look like. After the general surgeon was finished and left, it was time our nurses cleans the area :)<br />
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Because Annabelle was now going into a specialized portion of the OR for this particular multi-part surgery, mommy had to suit up to be able to walk her to the back. Mady and I wanted to take selfies... but Belle was simply too nervous to care to partake..</div>
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Before we knew it, the time was nearing where we would have to say our "See you later's.." Mommy's heart sinks, Daddy wears a brave face and Madelynne tries to stay strong and determine her opinion based on our reactions. There were so many nurses and doctors in and out of our room, the distraction was welcome but it was overwhelming for all of us. <br />
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Wheeling down the hallway to the OR.<br />
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In the OR, Annabelle made it very clear to her team that Tubey Puppy was the one in their to have surgery, not her. He wanted Strawberry flavored gas, just like her, and he was nervous about his IV so be very gentle with him. <br />
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She had the OR in stitches of laughter :)<br />
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Strawberry flavored gas.<br />
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If you've never been in the OR and seen your child put under anesthesia, I am here to tell you it is one of the most heart wrenching, painful things to ever watch. My stomach turns at the sight and thought of what's happening to her as I see her little weary eyes trace the room and the life within her die away.. AK has only seen her being put under anesthesia once and he told me immediately afterwards that he never wants to see it again. You should never see your baby in that condition.... it leaves a hole inside you fearing whether or not that was the last time you will see them conscious again, last time you'll see their eyes again, and they're glazed over and lifeless. It's awful.<br />
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Annabelle however, oh my goodness, she handles it so beautifully at this point, that I am in total awe each time. She used to fight anesthesia and the process and now she holds the mask herself until we lay her little empty body down to her back and her eyes fall back. Sweet, sweet baby..<br />
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We waited for 3 hours in the OR waiting room. Fortunately the time passed quickly because as each of our surgeons was complete their portion of the procedure, the would meet with us individually in a consult room to discuss how things went, so every hour or so, we were able to talk with a doctor. </div>
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The first was the GI surgeon, he explained everything that he did and how well the procedures went, where he injected botox and the results we should see. I asked about the placement of her G-tube and whether or not that was still aligning correctly, unfortunately as Annabelle is getting older and growing, the location her tube was placed at 2 years old is starting to shift now at 5 years old and her stomach inside her body isn't quite aligning with the hole on the outside of her body. Therefore when we insert the tube, it's leaning quite considerably. With time we will have to move her g-tube location and surgically find another hole that will continue to grow with her body.. </div>
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The general surgeon was next. The muscle biopsy went well and took about 40min to perform. Mady and I had a bet on how many stitches she would have as a result, I guessed 5 and Madelynne guessed 8. Mady was right :) 8 stitches.</div>
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After hours of waiting, it was finally time that I got to go see Annabelle in the PACU. Daddy couldn't go because Madelynne isn't allowed in the back so they had to wait in the waiting room. When Belle woke initially, she was frantic and thrashing around but fortunately fell right back to sleep. She laid there so peacefully. I try not to touch or wake her because I prefer she wakes up on her own like a good nights sleep, but it's so hard watching her take her time.. my mommy heart is impatient to see her pretty brown eyes again. </div>
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Look at Tubey Puppy! Bless his heart, he had an IV and was also in recovery, he must have had a tough surgery back there.. </div>
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Because Belle did so well, they choose not to admit her afterwards (thank heavens). We spoke with the Geneticist and he put in the orders to draw the blood before Annabelle's IV was removed in the PACU. They called two extra nurses and while my sweet baby was asleep, they did the draw. I can't lie, I dropped a tear or <strike>two</strike> five watching them extract the blood. I prayed the entire time so heavy that this test would provide my baby with answers and the help she needs. This was the blood that has the potential to decide so much!<br />
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The next day, Tuesday, Annabelle woke early and was excited to go see Noah's Ark as promised. We had hesitation on whether or not she would physically be ok to go but she seemed happy and full of energy to do it. We headed that way and unfortunately shortly after noon, I think the drugs from surgery began to wear off and her pain kicked in. Her leg was hurting her so badly. She couldn't eat or drink without her throat hurting her and her stomach was a mess. I gave her all the Zofran I brought from home and never her lapse of Ibuprofen and Tylenol but it wasn't seeming to provide her much relief.. she wanted to go home... so back to the hotel we went. She told us so many times during the day, "This is a really really bad day for me... this is my worstest day EVER". Belle rarely, RARELY ever complains of pain, so to hear her cry and see her physically hurting was torture. We took her back to the hotel and found the Disney Jr channel where she made her bed and we watched TV for the rest of the evening. <br />
Sweet Baby<br />
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com2tag:blogger.com,1999:blog-6582560550294418738.post-39991018721677933672016-10-16T18:35:00.001-07:002016-10-16T18:35:07.938-07:00Her courage is heroicThursday afternoon was insanely busy, we wanted badly to get on the road early so we both made a last minute decision to leave after lunch and pack the car in time to hit the road once the girls got off the bus. AK was determined to drive straight into Cincinnati.. I had our doubts but somehow we made it, and in record time! We arrived in Cincinnati shortly after midnight and everyone crashed within minutes of our head hitting the pillow.<br />
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Friday is when the fun was scheduled to begin. I was so grateful we were able to sleep in and not hit the road early. The girls woke at normal time, around 6:15am and we lounged around before breakfast and then started to get ready.<br />
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While braiding Annabelle's hair, the questions began, "mommy, will there be any pokes today?" I couldn't promise her there wouldn't be but I told her that I really didn't think there would. She seemed content, nervous but satisfied with my answer.<br />
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Our first appointment was at a different hospital location than the main campus and was only about 20m from where we were staying. We met Dr. Burrows for our Sleep Study follow up. The findings were impressive. In my opinion, Annabelle was so exhausted the night we performed the study that I thought she slept sound! However, the results revealed quite the opposite. The positive is that it did not indicate any signs of sleep apnea, thank heavens. But it did reveal 78 episodes of movements in her sleep, averaging at over 9 episodes x hour. With these episodes, her body would come out of whatever state of sleep she was in at that time and then begin again... keeping her body from being able to fully succumb to solid REM sleep and capture rest. It's similar to restless leg syndrome in a way.. where your limbs muscles spasm and keep you from being able to remain still and fall asleep.. or in belles case, stay asleep. It's called Periodic Limb Movement Disorder.<br />
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In an effort to fully diagnose this disorder and treat it, they would order labs. Fortunately, a different doctor already ordered those same labs for another reason so we were able to avoid more lab work and just pull the results from the existing that we had already done (we did those in July). The levels can range anywhere from 0-100 but it's important to have the number towards the top end. If the number is less than 50, it's a cause for a concern, but for this particular diagnosis, it's a confirmation for the disorder. Annabelles level came back as a 14. Yes, a 14. She compared this number to another on the law work and it supported the same. So there we have it, another diagnosis in the books and likely an excellent, solid explanation for why she's never slept thru the night, stays tired throughout the day and struggles to focus.<br />
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So here's the fun part. The easiest, least invasive treatment is to supplement her diet with iron. Seems easy right? Not for this kiddo.. she's undergoing surgery tomorrow for chronic constipation, encopresis and has a disease eating her GI system. We flood her body with miralax and senna daily, and they want to add IRON?! There's just no way.<br />
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So we're exploring what to do. There are a multiple of other drugs we can consider, but we're reluctant to give meds at this point in Annabelles care. I do want to help her gain quality sleep and rest, but I can't jeopardize the work we're doing to her GI system.. we'll see how things go. We'll make a final decision on our treatment plan after this weeks surgery.<br />
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After the appointment was over, we headed to the main campus for our next two appointments. The first was to see Dr. Kaul. His staff took us back promptly and the girls played games while we waited.<br />
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Unfortunately, there was an emergency with a NICU patient of Dr. Kauls and he had to go to the OR. His nurses were very apologetic but we assured them it was ok and we would keep the other family heavy in our prayers as we waited. They asked we go grab lunch and return at 2pm, while making Annabelle a salad in the cafeteria, I got a call from the hospital, it was the nurse asking if we would like to perform the Anorectal Manometry now vs at 4:30pm since we had an opening in our schedule. I quickly accepted and we made our way to admitting. Daddy and Mady finished their lunch and agreed to meet us upstairs once we were admitted and finished that long process... to our surprise though, things progressed extremely quickly once we were in admitting.<br />
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They immediately checked Annabelle in and escorted us upstairs to 4N where a team was waiting for us thru the double doors. We were taken to a very sterile "procedure room" where it was anything but welcoming. Heck, even I was intimidated at all the equipment and machines surrounding us. Annabelles eyes swelled and panic took over her little body. The nurse assured her that all the things in the room were not for her and she would show Annabelle the only things we planned to<br />
use. Child Life was scheduled to be with us later that afternoon so they didn't make it for the procedure.. my heart sank as Annabelle pleaded with her facial expressions to leave. She was alone in a room of just mommy and nurses and she knew all too well that this wouldn't end nicely for her. She didn't stand a chance trying to voice her opinion, she knew she didn't get a vote towards what was about to happen.. all she knew was that she was alone and not a single person in that terrifying room would rescue her.<br />
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Our nurses were wonderful. They worked very quickly and efficiently and didn't waste any time to allow Annabelle to think about what's happening, I believe this was a perfect strategy. It didn't give her any time to panic and fight, they were very matter of fact and moved so fast that even I didn't get a moment to hesitate or talk to Belle.<br />
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The procedure was....... awful. And that's truly all I want to share. Annabelle endured more than any child should ever have but she did it without a fight (I have no idea how). We began the procedure with her begging that I hold her hand and sing her a song, within minutes she said she didn't want me to talk to her and she wouldn't let me touch her. I stepped backwards from her line of vision and respected her wishes. I told her I love her very much and was sorry, but very proud of her for being brave... tears poured from her little face in complete silence as she laid there alone on the table enduring the unimaginable. My heart was numb, my body was motionless and the gut wrenching knowledge about what was happening to my baby literally made me want to puke.<br />
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AK called during the procedure, and because neither of us expected things to progress so quickly, he missed his opportunity to be in the room with us... Annabelle was silent, crying and broken but she wasn't moving or fighting so I told him not to come upstairs and to just wait until we were finished. I didn't want her seeing daddy or sissy to upset her more and I knew the more cooperative she was for the nurses, the faster it would be over.<br />
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After the procedure, Belle dressed herself and climbed back in her wheelchair. We made our way back to Dr. Kauls office where he joined us with the manometry results.<br />
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Unfortunately, the manometry revealed everything we feared, that she indeed has extensive damage to her lower GI and has caused quite a bit of work to correct. The good news is that we expected this all along and planned for it in the OR, the bad part is that I had been praying the doctors were wrong :(<br />
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Dr. Kaul was so loving, funny, witty and honest. He explained what he would be doing while in the OR and answered all our questions. He was very gentle with Annabelle as he knew what she had just experienced.. she still wasn't speaking to any of us yet she was accepting of the Doctor. This little girls bravery and courage is so admirable, how she doesn't fight everyone in a lab coat is beyond me... then again, it's probably because she's been so defeated by the medical world that she's learned she doesn't stand a chance in the fight.. nonetheless, her courage is heroic.<br />
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For dinner, Belle wanted a bowl of olives. Yup, that's all she wanted. So to an Italian restaurant we went where we all ordered enough pasta dishes to take back to the hotel to warm for another dinner the next night. During dinner, she began to open up. Sissy laughed so hard she snorted at a joke and Belle burst into laughter at her.. our table began a laughing snorting fest just to see the smile on their faces. AK and I exhaled... thank you god for giving this little girl her laugh back.<br />
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We slept well and Saturday morning the girls woke early for Great Wolf Lodge! You could tell Annabelle was still apprehensive to trusting us and forgiving me but Mady was a great distraction and liason between the parents and Belle. The girls had a wonderful time playing in the water park, hand in hand they ran all day laughing with one another.<br />
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Thank you god, so very much for the ability to provide my children with the best experience they can have in such a hard circumstance. Thank you for giving me each of these girls, although I don't understand why all the time, I know they are shaping our family to be the best we can thru each step of this journey. Most of all, thank you god for giving my girls one another. They argue, they bicker but they balance, hug, support, understand and trust one another in the most honest and pure way. They need each other and I am so grateful they are in this together. Our journey is shaping both of my daughters into such beautiful little ladies inside and out, in a way I could have never done on my own. For that, thank you.<br />
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Tomorrow is surgery day. Aside from Annabelle's surgery at 2 1/2yrs old when we removed so much of her esophagus and stomach, performed her Nissan and placed her Gtube - this will be the next biggest surgery she has ever had.<br />
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This is her 27th round under anesthesia and my heart is in pieces. The doctors will be performing:<br />
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<ol>
<li><b>Lower GI reconstruction </b>of her colon, rectum and large intestine, removing anything that's damaged and repairing anything that's salvageable by dilating and stretching the muscles and injecting all 4 quadrants with Botox to regenerate the cells and help relax the nerves.</li>
<li><b>Upper endoscopy</b> to including taking biopsies in her esophagus, stomach and small intestines while they do a visual inspection of the integrity of her Nissen and damage from when the disease was active in the spring (prayers we have made it to remission but we won't know until Thursday.)</li>
<li><b>Muscle biopsy</b> where they'll remove a 3 in sample of muscle from the top of her leg.</li>
<li><b>DNA extraction</b> (method still isn't determined, it may be as simple as blood work, platelets, or removing spinal fluid, we will determine tomorrow morning how the extraction will work.)</li>
<li>Last but not least, Annabelle also asked if the doctor would <b>change her tubey </b>while in the OR. We brought an extra gtube with us, but as sweet as they are, they will let us keep our own G-tube and they'll use one of the hospitals instead :) </li>
</ol>
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Tonight we will leave Great Wolf Lodge and check into our next hotel where we will stay until Thursday. Annabelle will be cut off from all formula at 315am and switch to clear fluids (pedialyte) via gtube at that time. She'll be NPO by 615am. 8am we meet with our Geneticist and discuss our plan for how and what information we're prepared to learn from the tests. 945am she will be admitted back into the hospital and surgery is scheduled to begin at 11:18am. At this time we have no idea how long everything should take, so please please please take a moment tomorrow morning and say a prayer for Annabelle and our family. Pray for the comfort of angels to surround our baby girl as she goes back under the knife and endures her 27th surgery in 3 1/2 years. Pray for the guidance and skill of all the surgeons working on my daughter and peace for our mommy and daddy heart as we wait in the waiting room. Dear god, please keep my baby girl safe.. she's so strong and we are so close to gaining our diagnosis.<br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-28966613269026756432016-10-13T08:09:00.001-07:002016-10-13T08:09:09.368-07:00Planning for a chaotic weekThank you all for your patience in my lack of updates lately. Because of Hurricane Matthew hitting the east coast, I have been working storm duty for Dominion Power and haven't been home with my family since Saturday. I got home yesterday evening in just enough time to run Madelynne to Piano practice, hug my babies and begin to TRY to pack for our 8 day trip. Exhausted is an understatement.. and not at all the state of mind I need to be in before our tour of Cincinnati and major surgery. So if you have extra room in your prayers, please, keep us in your thoughts.. we are running on fumes right now.<br />
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The plan is to hit the road by 6pm this evening. Our first appointment is tomorrow at 8am, so that will give us 14 hours from the time we leave Richmond to the time we need to arrive for our appointment. Given it's a 10 hour drive, we only have 4 hours, max, to sleep. We're not sure where we will stop for the night.. it'll depend on how the girls are doing and how tired we're feeling as to when we'll pull off and sleep for a few hours before hitting the road again.<br />
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<span style="font-size: large;"><i>HERE'S THE ITINERARY </i></span><br />
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<u><b><span style="font-size: large;">Friday, October 14th </span></b></u><br />
<b>8am - Sleep Study Follow-Up</b>. This appointment is not at the main hospital campus, it's approximately 20min from the main hospital. We will review the results of the Sleep Study that we did in the spring. I hate that it's been this long to followup from this test, but it is what it is. Hopefully we get some help and guidance on what it will take for Belle to finally sleep thru the night for the first time in her life. <br />
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<b>12pm - Motility Clinic Visit</b> at the Main Hospital. We will meet, Dr. Kaul who will be performing the majority of our procedures that day and during surgery. He's the Director of the Neurogastroenterology and Motility Disorders Clinic for the hospital. We are thrilled to have him part of our team and find so much comfort that he's the best in GI Motility (Annabelle's #1 cause of pain).<br />
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<b>1pm - Anorectal Manometry </b>- We will be admitted for this procedure. It should take approximately two hours to perform and is hands down going to be one of the most painful procedures Annabelle has had to endure. I have not told her what is going to happen and I feel terribly guilty for keeping it from her (because that isn't how we navigate this journey with our daughter), but I just can't find the words to explain to a panicked 5 year old that it's going to be hell and allow her to spend days, hours and miles down the road filling herself with anxiety from it. I've asked that Child Life be involved in the procedure and are there to explain to Annabelle what will be happening.. they always have the best way of explaining to children on a level they'll understand. Belle will be conscious and awake for the procedure, likely strapped down.. so please, please pray that she recovers well (psychologically and physically) and everything can be performed as quickly and efficiently as possible so we can leave.<br />
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The results of this test will give our doctors all the information they'll need for when we perform surgery on Monday. We will determine how much of her lower GI is not salvageable and what we will remove and also which places in her lower GI <i><b>are</b></i> salvageable but to which extremes we need to treat them and pray we can save it.<br />
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<i>After she is discharged from the hospital Friday evening, we will find a hotel somewhere between Cincinnati and Mason Ohio to stay for the night. Friday evening fully depends on how Annabelle is recovering and how she's feeling. Our goal is to find a super cheap hotel, preferably close to Mason, Ohio so we don't have to travel far on Saturday.</i><br />
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<u><b><span style="font-size: large;">Saturday and Sunday</span></b></u><br />
<b>Great Wolf Lodge! </b>We decided to bite the bullet and take the girls to Great Wolf Lodge for the weekend. We are hoping it will give Annabelle and opportunity to forget what happened on Friday and distract her from the upcoming surgery on Monday.. she will be with her sissy and the two of them can play and have a great time together making plenty memories to relive during the stressful week ahead.<br />
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<u><b><span style="font-size: large;">Monday, October 17th </span></b></u><br />
<b>8am - Genetic Consult </b>- This is one of the appointments AK and I have been anxiously awaiting and subconsciously fearing. We will be consulted on what information the genetic testing may reveal and will make decisions on just how much information about our baby girl we are going to want to hear. I look forward to this consult on behalf of the quantity of information we will receive, but I am scared to death what these answers and tests may reveal. A lot of these decisions have to be made before the surgery that day because that could determine just how much and what method of DNA extraction they'll perform.<br />
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<b>9:45am - Admission</b> - Shortly after the genetic consult, we will head towards admissions and begin the day. They will admit her to the hospital and prep her for surgery where we will begin to meet with everyone on the team, all the surgeons, anesthesia etc<br />
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<b>11:17am - Surgery</b> - At this point, we have absolutely no idea how long surgery will last or what will happen after surgery is over. We don't know the recovery period or whether or not Annabelle will be admitted afterwards. Everything is truly based on how extensive of work we need to perform while she's in the OR and how well Annabelle is managing pain afterwards. Our prayers are that we can take her back to our hotel that night.. but only as long as we can manage her pain on our own.<br />
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<u><b><span style="font-size: large;">Tuesday and Wednesday</span></b></u><br />
Recovery and taking it easy. If Annabelle is up to it, we plan to go to the <a href="https://arkencounter.com/" target="_blank">Ark Encounter</a> and <a href="https://creationmuseum.org/" target="_blank">Creation Museum</a>. She won't be able to walk for quite some time after the surgery so this will be an easy stroll where she can stay in her wheelchair or stroller while we explore some fun things. If she can't get around much or isn't up for it, we will spend our time watching every movie, playing every game and painting all our fingers and toes in the hotel or hospital for days :)<br />
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<u><b><span style="font-size: large;">Thursday, October 20th</span></b></u><br />
<b>11:15am - GI follow-up - </b>Biospy results day. Pathology will have the results of the biopsies taken during surgery so we'll meet with Dr. Putnam to follow-up from surgery and review those. Annabelle relapsed pretty hard in the spring with no plausible explanation. We have been very diligent in making sure her foods and exposure are controlled so our prayers are that her Eosinophil count has dropped since the spring. If it's remained high and the disease is still present and active, than we will have to determine our next plan.... and that likely will mean Annabelle will loose all her food again. I don't even want to think about this option, so fingers crossed for zero Eosinophils.<br />
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Thursday afternoon / Friday morning we will begin our drive back to Richmond.<br />
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<i>Our hearts are heavy as we begin this trip. Madelynne has secretly been asking her Sunday School teacher at Church if there's any way Annabelle can have extra prayers because she is very scared for her sissy. She asks often if her sister is going to die, she asks if she will be in pain during or after the surgery. Annabelle's depression is becoming more and more sneaky as she gets older. I can tell school and activities have been an excellent distraction, but when the house is silent and she's alone, little tears fall and her face becomes pale at her reality. Annabelle's questions are so heavy lately, she wants to know if her pain will ever go away, she wants to know when she can have a real cake or be able to ride a bus with her friends and not be in a wheelchair...... she wants to know, "Why won't God listen to my prayers and make me better.. God doesn't love me like he loves other kids.. he won't make me better and I ask him every single day"</i><br />
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<i>This trip has the potential to be life altering for our family. We are so very strong together, but the weight of the unknown is heavy.. life in a hotel and hospital is physically and emotionally exhausting and our faith is a constant battle when you're raising little girls to trust God with all your heart.... and then life lands you in places like ours. </i><br />
<i><br /></i>
<i>Our prayers for the next 8 days are for safe travels, knowledgeable doctors and skill in their hands as they operate on our daughter for the 27th time in her life. We pray for the expertise of the anesthesia team and miracle over her GI system that the disease has not spread. Healing for Annabelle's body as she recovers from a major surgery. Patience, skill and love as we control our daughters pain. We pray for understanding, love and comfort for both our girls as they witness and are part of a big week in our family. Love, ease of anxiety and understanding for all of us as we support, embrace and lean on one another 550 miles away from home. </i><br />
<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-87840364036140328602016-10-07T16:52:00.004-07:002016-10-07T16:52:41.564-07:00Panic ButtonAfter all we've been thru over the years, rarely do I panic anymore .. I do get nervous at times, but I don't panic.<br />
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Last Thursday I began running a high fever, it's taken until today to finally keep my eyes open and head to stop pounding (mind you I went to the doctor myself last Sunday with no answer). Mady began Monday with the high fever, headaches, tummy ache, and body aches.. she's now on Day 5 and I just had to take her in.. I couldn't take it much longer seeing her feel so crummy.<br />
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So here we have it, 6 days before leaving for Cincinnati and on the brink of Annabelle's biggest and most important surgery ever - Madelynne and I have mono.<br />
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Holy shit.. there it goes.. the panic button 😳<br />
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Having three kids in our home that attend school has been a germ nightmare this school year. Annabelle wears a face mask daily and we wash our hands constantly but somehow haven't been able to combat the germs. Belle seems better but oh my god, if she gets mono, I have no idea what that would do to our upcoming appointments and surgery schedule. We've worked sooo hard to loose it now. Most importantly, I can't imagine what a virus this dangerous would do to her little body with no immune system. The entire idea has me covered in hives tonight as I curl on the couch with my babies... dear god, please help us, please protect Annabelle from this virus, keep her healthy and strong, please heal Madelynne and I and please, calm my momma heart :'(Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-80213609660401012622016-10-04T13:43:00.002-07:002016-10-04T13:43:13.054-07:00Being 5 feels crummy..Annabelle's birthday party was last weekend, it was a mermaid themed party and all her friends joined her to celebrate. Albeit the planning and decorating kicked our butts but it sure was worth it to see our little mermaid smile. She had such great energy on the day of the party. I made her sleep in and rest in our bedroom for most of the day until her friends arrived, so by the time they were ready to play, she had the energy to keep up!<br />
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Two days later however, another story.<br />
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I came home from work and found Annabelle laying on the couch. Still wearing my heels and purse on my shoulder, I leaned over the couch and my stomach sank, "Something's wrong". I started shouting questions "Annabelle, hunny, are you ok? Do you feel ok? What's going on?" Everyone just stood there staring at me like a crazy person, but my mommy gut was screaming in fear and panic that something bad had happened. I felt all over her body and she was blazing hot to the touch.<br />
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106.2. Yes, 106!!!!!!!!!! I kicked off my heels and dropped my purse in the floor as I scooped her into my arms and ran upstairs to put her in the tub. She was limp and hardly speaking. I just knew she would start seizing any second so I knew I didn't have much time to get her temperature down.. I also didn't want her to start seizing in the bathtub, but I didn't have a lot of choice. While she sat in the tub, I gave her Motrin and 30min later gave her Tylenol. She shivered and cried as I poured the lukewarm water over her hair. Once the bath was over, I laid her exhausted little body in my bed on a towel where I watched her temp start to drop.. it got down to 103.4, what a relief.<br />
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Once it was down a bit, I exhaled and evaluated the rest of the house. <i>What the heck had happened?? How did this happen so fast? And HOW in the world did no one see this but me?!</i> The nurse said she was fine at school all day, Annabelle said she had a great day. Just suddenly, the fever came on. For Annabelle, this isn't unusual, but it sure is nerve wracking. She had no other symptoms, nothing. The only complaint was that her eyebrows and head hurt, likely from the fever.. For dinner I made her some chicken broth and tiny noodles but she didn't eat much. It wasn't until about an hour after dinner that she started crying in pain again, she was pleading to help her tummy.. she started demanding to make bubbles NOW! I hooked her g-tube to an extension and 60cc syringe, and voila, she poured more air from her stomach than I have ever, ever seen before in my life. It was awful and I know must had been excruciatingly painful :( The air just kept pouring out. It's never done this before.. I was baffled.<br />
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We gave Belle some more meds and tucked her into bed to prepare for a long night... and a long night it was. I couldn't sleep bc I was worried her fever would spike again and I wouldn't be there, she needed meds around the clock, we didn't want to give her any night feeds bc of her stomach. It was just a mess. That night, daddy also started getting sick.. and then aunt Sarah, one by one the house started falling apart with only a few stranglers left standing. Keeping everyone in their own quarantine was a nightmare, sending the healthy ones to school, isolating the oddballs and rotating meds was a chore. Unfortunately, I had to leave town for work so I had to balance the house before I could even leave them on their own....<br />
this sickness has lasted all week.<br />
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It's now been a week and while most the house is well, myself and Mady have gotten sick and Annabelle still has not recovered. I am starting to become quite worried about her health and and the upcoming surgery. Her fever will spontaneously spike, she occasionally can't make it thru a meal without having to pull a good amount back off her stomach, and she's coughing terribly. Last week she spent a few days having to lay down in the school clinic after nausea waves and taking over 50 cc of formula off her stomach.<br />
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Her stoma has started to bleed and drain, which is typically an indication that her body is trying to fight something. We've been cleaning her belly/stoma around the clock but the drainage just isn't slowing... it has though, stopped bleeding so that's a good thing.<br />
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For now, we wait. I have contacted Cincinnati Children's and we are on standby in case her health begins to take another downward plunge. We just can't let her temperatures continue to spike and drop the way they have and heavens knows we can't continue to expose her to whatever germs are already spiraling around the school and in our house. The protocol in the home right now is that any time you walk into the house, you immediately shower and the dirty clothes go into the washing machine, that includes when you come home from school/work/shopping etc. We are spraying everything with Lysol but I don't know it's working... gosh I pray it is.<br />
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Surgery is scheduled for Monday, October 17th, we have to leave the Thursday prior for several appointments that Friday the 14th. I will post an update on our travel plans soon.. we are drowning ourselves in scheduling and exhausting ourselves with prayers of mercy that Belle will be healthy enough for surgery. Please pray for the same. Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-53942899196317436982016-09-22T13:44:00.002-07:002016-09-22T17:41:17.908-07:00Kindergarten LifeLast week, I had the opportunity to visit Annabelle in her classroom. The teacher uses the first couple weeks of school to focus on how everyone is unique and different in their own way, and Friday was Annabelle's turn to show how she is special too. We have a few books at home that we've purchased to help Annabelle understand what happens inside her body, with more understanding it's been able to alleviate some questions and fears (Mady's too). I thought sharing those books would be a good way to share some insight to the class about Annabelle.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCNbm0JTLIO9XFp5Qx61n7opfqwX5SVHqcx5sXDc9gVEZDSrK0a5oO1DOkqYfU20HakFZwI3S9V1butziNjz1JKTVYhvs_YOD8Mfjn0Bm2kvoJ4Rs5hR5jAW-eckoGxs6JmLkH4bnr5Em/s1600/Eating-Isnt-Always-Easy-Bens-story-about-his-Eosinophilic-Esophagitis.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCNbm0JTLIO9XFp5Qx61n7opfqwX5SVHqcx5sXDc9gVEZDSrK0a5oO1DOkqYfU20HakFZwI3S9V1butziNjz1JKTVYhvs_YOD8Mfjn0Bm2kvoJ4Rs5hR5jAW-eckoGxs6JmLkH4bnr5Em/s1600/Eating-Isnt-Always-Easy-Bens-story-about-his-Eosinophilic-Esophagitis.jpg" /></a>One of our books is called<b> "Eating isn't always easy"</b>. This is a wonderful book that explains Eosinophilic Esophaghitis, how the disease moves around her body and why it makes certain food hurts hurt her. While it's a WONDERFUL book for our family and our girls, I choose not to use this one for the classroom just based on the complexity of the material.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkOUBUQWSLsQU_3VcylJkt5xRfpLXbpfjUo87EGFUXRl6qYxq94Fx8OdLtO1745zEvIqrTdN5cUyO3VLIf8s7AmlE2g5iCm7xl0liiAcfGYkW2pUH0CennV2b77P_mVVA1Dqe7Kej9Iin/s1600/Cover--MTOWTE.35190227_std.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="312" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkOUBUQWSLsQU_3VcylJkt5xRfpLXbpfjUo87EGFUXRl6qYxq94Fx8OdLtO1745zEvIqrTdN5cUyO3VLIf8s7AmlE2g5iCm7xl0liiAcfGYkW2pUH0CennV2b77P_mVVA1Dqe7Kej9Iin/s320/Cover--MTOWTE.35190227_std.jpg" width="320" /></a><b>"There's More Than One Way To Eat"</b> is one of our favorite books. It illustrates a day in the life of a tube fed kid and how similar a tubey is to everyone else, but how eating is different for them. The book explains the process for how a feeding tube goes into the belly like a straw and the different ways you can eat thru a tube: quickly (bolus) or slowly (feeding pump).<br />
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The book also portrays the story of two friends, one of which is in a wheelchair and one friend that isn't. All the while, retaining the feel that all kids are the same, have the same feelings, values, interests, humor.. some kids just eat differently and have special needs, and that is okay too.<br />
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I read this story to the class. The kids took it well, their questions were difficult at times but I allowed Annabelle to answer a few about herself after I shared the most age-appropriate answer.<br />
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After we finished the quick story about tube feeding, I also flipped thru some of the pages of <b>"Real Kids, Real Tubes"</b>, which is our particular favorite of course... bc Annabelle is featured in the book 3-4 times AND on the cover of the book! How cool is that? The kids thought it was quite impressive as well.<br />
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Each page is full of children, teens and adults that are playing sports, living life and doing all the fun things just like everyone else, but with a tubey. Pages are themed, for example, "Tubey's like to dance" .. and show pictures of kids in dance performances or dancing around the house. "Tubey's like to go to the beach" .. "Tubey's have to be very brave" in which showed some pictures of kids in the hospital. Annabelle stood up and told her class that she often has to go to the hospital in Cincinnati, Ohio and while she used to cry for shots, she doesn't anymore. All the kids were fascinated and said "Whoa! I always cry for shots! You don't cry?" She was confident as she piped, "Nope! Not anymore!" <br />
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<i>The experience as I sat in front of a Kindergarten class (secretly praying they wouldn't eat me alive) was surreal. I looked down, to my right and saw Annabelle, criss-cross-applesauce, with the most life and sparkle in her eyes as she watched her mommy read a story all about her. She sat so strong and so confident. Bearing an illness that carries the weight of the world, she sat on the floor among peers proud. With her nurse behind her and her mommy in front of her, she absolutely sparkled and burst with pride. </i></div>
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<i>There is no better gift that I could have given her this school year than just that. A presence in her classroom, confidence in her fight, a voice to articulate to her friends what she is feeling, justification that she is unique and just as normal and weird as the rest of her friends. God bless that kid, she is raising me in more ways than I think I am raising her some days.</i></div>
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I've spent hours upon hours glued to my phone trying to plan our upcoming hospital visit (while juggling work!), so when the weekend hit, our family bolted for fun. We ventured to "Field Days of the Past". The girls had a wonderful time, they rode rides together, watched tractor and truck pulls, pet animals and laughed with one another. We did SO much walking and pushing Belle, but we did all had a great time.<br />
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This week was tough on our family. Madelynne and I caught a GI bug so Annabelle had to go into quarantine. A few kids in Belle's class are sick so she's been living in a face mask to protect her from germs.. between scrubbing the house in lysol, running Annabelle to the dentist and appointments, juggling a thousand Cincinnati Children's Hospital phone calls.. before we knew it, ANNABELLE TURNED FIVE!<br />
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Yes, I can't believe it either. Her birthday was Tuesday, September 20th and although she spent her ENTIRE day trying to convince everyone that it wasn't actually her birthday bc she believes her real birthday is Saturday (party day), it legitimately was indeed and our little girl is no longer little. She's turned into a little <i>lady </i>and we are so very proud of who she's becoming.<br />
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From the 3lb 10oz, undercooked nugget that we brought home, to the rockin 38lb fighter she is today, our house has been monumentally changed for the better as we've grown into our niche of the Bishop family. <br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com2tag:blogger.com,1999:blog-6582560550294418738.post-5452544302675796992016-09-08T06:41:00.000-07:002016-09-08T09:15:43.177-07:00Victory! She made it to Kindergarten!I can't believe it, the day is finally here. A day that doctors told us Annabelle may not make it to, a milestone we didn't believe we would face, an amazing step in her journey we always prayed she would experience. Annabelle made it to Kindergarten!<br />
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As we prepared for bedtime, Madelynne found the book that we bought for her that read, "The Night Before Kindergarten" and asked to read it to her sissy. With each page, Annabelle laid in her sister's lap in awe, absorbing all the words on the pages but not asking a single question. We said our prayers together and before we knew it, the lights were off. Both girls were full of butterflies and did get up a few times but were both asleep by 8pm, thank goodness.<br />
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I had been working storm duty for the power company for three days and had just gotten home earlier so the night was quite chaotic, trying to pack their backpacks, pick out lunch with limited food because I hadn't been home to grocery shop, and iron their first day of school outfits. As soon as the kids things were lined at the door and we laid down, I fell asleep. Im pretty certain in record timing too..<br />
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<span style="font-size: large;">FIRST DAY OF SCHOOL</span><br />
6:15am, both girls come running to our bedroom, one after another with a smile from ear to ear. "Today is the day! It's the first day of school!!!!" We had an hour to eat breakfast, get dressed and get out the door. Our nurse showed up with a big smile and said, "Today is my 1st Day of Kindergarten... again!! yay!" :) She and Annabelle were so excited for their big day. Daddy checked the tire pressure on the wheelchair and put a little more air in the tires and I fixed Annabelle's pigtails with matching bows.<br />
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Only once that the morning did Annabelle tell me that she was sad she can't ride the bus with her sister and that she has to ride in a wheelchair, but we blew it off and smiled back "Annabelle, I am sorry you can't ride with your sissy, but HOW COOL is it that you get to ride your OWN wheelychair bus?!" Mady chimed in, "yea Annabelle.. im really jealous, you're really lucky." Annabelle smiled in victory and bounced away. The distraction worked.. for now.<br />
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The morning began to get hectic when it was time to get to the bus. Madelynne's bus is to arrive at 7:20a at the bus stop down the street, Annabelle's should arrive at 7:33a in front of our house. We headed out the door and made our way to Mady's bus stop.. as soon as she was loaded and I was waiting for the bus to pull away, I noticed Annabelle's bus pulling up!<br />
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Daddy had stayed in the driveway with Annabelle so I sprinted down the street (in heels for work, mind you) and tried to take a few pictures of Annabelle before she was loaded up. She sat so confident in her chair and was so proud of herself as the bus got in position for her. You could definitely tell she was a bit apprehensive but she wore a smile that showed otherwise. She was ready for school and nothing was going to stop her now :)<br />
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The process for loading her onto the bus takes a couple minutes. They have to unlock the bus doors, check ID and lower the gate for the wheelchair. Once she's finally on the bus, they have to lock and strap her chair down with the transportation brackets we have installed on the chair and then they can finally leave. Unfortunately, we live on a main road in our subdivision so this long process is certainly holding up traffic.. but they'll have to get over it.<br />
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I have to say, the best part of having a nurse at the school with Annabelle is that I get a play-by-play on how she's doing all day and pictures of my sweet baby.<br />
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Our nurse texted me shortly after arriving at school, "Mom! You forgot to give me my lunch money for coffee!" haha. Both Pat and Annabelle had a wonderful first day of Kindergarten and we are so happy.<br />
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<span style="font-size: large;">SECOND DAY OF SCHOOL</span><br />
A little different.<br />
The morning was much harder but the excitement was still running. The first day gitters were gone as Annabelle dressed herself for the school day. We talked about her favorite parts of school and she told me she loved everything, but she doesn't like her tubey or wheelchair.. her little heart was hurting and the anxiety of 'being different' was certainly weighing on her. This morning was tough but we are working thru it.<br />
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She wouldn't eat all day Tuesday.<br />
The nurse and I texted multiple times thru the day and discussed what could be the problem and the best we could come up with is the difference in schedules. When we're home, Annabelle gets a bolus feed (fast tube feeding with her elemental medical food via gtube) at 9am and 1pm. We usually eat lunch around 1130am so this scheduled has always worked for us. Now that she's in school and they eat lunch much earlier, I think her 9am bolus feed is upsetting her stomach and throwing her appetite off. We're going to adjust our feeding schedule to move the bolus feed up to 8am and afternoon feed to noon. Hopefully this will give Annabelle a little relief and her appetite will improve. It's just an adjustment that we're going to have to work thru to find what fits her best.<br />
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<span style="font-size: large;">MEDICAL UPDATE</span><br />
We have the results from the EKG and Echocardiogram. Both tests returned normal which is great. Our doctor in Richmond has sent the results to the Neuromuscular Team in Cincinnati for review. As soon as our doctor there puts in the order for the Muscle Biopsy, we will be able to schedule our next surgery. I am getting more and more nervous about timing and scheduling so my fingers are crossed we can finally get a date on the books! <br />
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This week has been a whirlwind for our family. So many emotions were rolled into making this week happen and we couldn't be more relieved to watch our dream for our baby unfold. Doctors for years have told us that putting Annabelle in school shouldn't be our priority, that we need to only focus on her quality of life while we have her.. but the more Annabelle defies the odds, the more we believed that her best quality of life WAS going to school with her peers and being a kid just like everyone else her age. She wants to do all the things her sissy and friends are doing, she wants to be included in activities even if that means risking her health - she wants to LIVE life to the fullest and we want the same for her. We work so hard at finding the safest but fair balance between the two. Letting her live a fun life vs keeping her in a safe medical bubble. There is a lot of give and take, where it feels like mommy and daddy are stepping out of our comfort zone a lot to satisfying Annabelle's desires but we are making it happen. If it makes this baby girl smile, than it's worth it. And the smile she's worn this week is worth all the tears of frustration 1000x over!<br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-61696788446600054752016-09-02T08:02:00.001-07:002016-09-02T08:02:37.947-07:00Echocardiogram, EKG, Kindergarten, Oh My!Belle had to fast Wednesday night so I could collect a fasting urine sample to take to LabCorp Thursday.. she did good. She asked for a cup of formula at bedtime but didn't wake for another thru the night. I laid in bed Thursday morning scrolling thru my phone and planning the day when I heard someone make their way to the bathroom - I BOLTED out of the bed and sprinted down the hall, not knowing if I would find Mady or Belle... fortunately, it was Belle and I was able to stop her before she went potty.<br />
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Urine sample collected, measured between two cups, one of which goes into the freezer: CHECK. Were off to a good start!<br />
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Thursday was a busy day for the Bishop ladies. There was a lot of anticipation for all the things we needed to accomplish.. I knew the day had the potential to stress me out so I laid the pressure on heavy for the girls too "Mady, Belle - we have a LOOOOOOOOT to do today, and it's just us three. So mommy is probably going to be a nut running around. I need you to bare with me, be on your best behavior, get along and help mommy out. Got it?" It's VERY rare that I give them a forewarning like that... so when they heard the words, they immediately stood to attention and asked what they could help with. Because let's be honest, if the mommy is having a bad day, evvvverybody is having a bad day ;)<br />
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We needed to be at the hospital by 11am for the test. But before we check into Outpatient Registration, we needed to go by LabCorp. Immediately after the hospital, we had Kindergarten Orientation for Annabelle and then 2nd Grade Orientation for Mady. So I knew... by 10a, my ducks had to be in a row (add salt to a wound - im on a diet and can't have coffee!! OMG!)<br />
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The girls and I organized and distributed the mounds of school supplies into their own bags. I wrote names on their things and we lined our bags by the door. The girls didn't argue when I picked out their outfits and to my surprise, we were all ready to roll out the door on time! (I miracle I tell ya, a MIRACLE)<br />
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The car ride is when everything changed. We had been having a smooth, organized, cheerful day until Annabelle reiterated, "Mommy, we're going to the hospital NOW?" .... "Yes baby, we're going now and as soon as it's over we will go straight to your new school to meet your teacher!"<br />
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Her tune changed. The tears began and anxiety flooded the car. Mady's eyes were the size of quarters in a panic.<br />
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<i>I was actually looking forward to this visit, for both girls. I wanted to ease some of Mady's worries by showing her that Annabelle is *always* subjected to painful procedures when we go to the hospital and allow her to have a glimpse into what's going on with Annabelle when she does go. I also wanted Annabelle to experience the same, the opportunity to have a doctors visit with no pokes or boo-boos and a moment to have her sissy by her side and hold her hand. These girls are everything to one another and their bond is something I could have never taught on my own. They look out for each other and while our family circumstances isn't ideal, they together, have grown to absolutely own this journey with one another. </i><br />
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The car ride was tough. Mady tried repeatedly to remind Annabelle that she wasn't going to be be hurt today but Annabelle had made up her.. she simply didn't want to go.<br />
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We arrived in time to make the run to LabCorp before checking in. Our receptionist was wonderful and was able to distract Annabelle and make her laugh a bit. As they took us to Cardiology and we walked the long white, sterile halls, Belle began to cry. I hate moments like these. We are committed to being there and doing the test, I can't negotiate any of it with Belle and while all I want to do is ease her anxiety, I know the only way to do that is to let her win and we leave.. but that isn't an option. It's never an option. The only stupid frickin option is to put myself in front of her and remain clear that we must do the test and watch in her broken eyes as mommy has once again broken her heart and let her down.<br />
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Mady offered to say a prayer for her.<br />
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I don't know if my heart crumbled or burst, but I know all I wanted to do was break down as I heard Mady's sweet words. "Dear God, please let my sister know that she is going to be ok and you are going to take good care of her. Don't let her be scared and don't let the doctors hurt her......"<br />
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Belle watched as her sister just spoke to God with whatever was coming to her mind. They both said Amen and we were called back to get started. The Echocardiogram was easy, of course, but the anticipation was still heavy for Annabelle. I think just the aspect alone of having to be in a hospital and not running around like a kid is starting to weigh her down and remind her that she's very sick. I kept whispering to her that she was doing a good job, but she didn't want to look at me. She paid attention to the monitor in perfect, motionless, silence... or she watched the wall. The test itself took about 40 minutes.<br />
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After the Echo was finished, it was time for the EKG. Mady wanted to lay with her sister and they told each other stories until the nurse came in to perform the test. Once it was finished, the girls pulled each of the stickies off together.</div>
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The afternoon carried on just as quickly as our morning began. We met daddy for a super fast lunch after we left the hospital and flew home to gather our things before going to the school. Annabelle did awesome during her orientation and she loved her classroom. She even knew some friends in her class! We adore our teacher and I think it will be a wonderful fit for her. I dropped all her medical supplies off with the clinic where OUR nurse will administer all her feeds and care. We do have a few more contracts to sign with our nursing agency and give to the school but those things are just about wrapped up.<br />
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We should have the results back from the cardiology tests hopefully by next week. As soon as our pediatrician here in VA reads them, they will be sent back to Cincinnati Children's Neuromuscular team where they will read the results. As long as everything clears, our orders for the muscle biopsy will then be written and we can began scheduling the OR. We need three surgeons in the OR for her next surgery, so organizing this chaos hasn't been easy.. but were almost there! Fingers crossed for a happy healthy heart so we can be cleared to move forward.</div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com1tag:blogger.com,1999:blog-6582560550294418738.post-23798153649704491002016-08-26T07:19:00.001-07:002016-08-26T08:15:03.559-07:00Annabelle's Going to School!<strong>We WON!!!!!!!!</strong><br />
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It hasn't been pretty.<br />
It hasn't been fun.<br />
and it SURE hasn't been easy.<br />
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but baby girl is headed to Kindergarten!!<br />
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We met with the school again this past Wednesday. Before the meeting, AK, our nurse and I discussed our game plan, what we would settle for and which aspects of the agreement we will not budge on. I have spoken to so many professionals, medically and academically, parents and family over this situation, so I felt confident in what we were asking.. but I also confidently felt like we would lose. I refused to budge on what Annabelle deserves and if that meant we walk out of the school defeated and entertaining the idea of home-schooling her, than so be it.<br />
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Fortunately, the Health Services Coordinator for the county recognized Annabelle's daily needs as far more cumbersome than what the school nurse would be able to provide and she started writing down notes. The further we got into our discussion on Annabelle's needs, the more solid the team felt that the best avenue for Annabelle in the public school system would be to develop an 'Individual Health Plan' that essentially outlines our daily Plan of Care (that we already keep 100% up to date with our nursing agency anyway). Our private duty nurse will accompany Annabelle to school every day and carry out all her daily needs, just as we do at home (medications, tube feedings, venting, vitals, assessments, more meds, more feeds, more vents etc etc etc). </div>
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The 504 Plan outlines the classroom accommodations. The plan protects Annabelle and will allow her:</div>
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<li>to be released to her private nurse for any and all medical needs such as feedings etc</li>
<li>preferential seating close to instructions (ADHD)</li>
<li>visuals or manipulatives to sustain instruction (ADHD)</li>
<li>rest / nap in the school when tired. If this doesn't help, she will be released from the school without penalty</li>
<li>reduce work such as half an assignment</li>
<li>use her wheelchair to lunch and all resources (were hoping she won't need or use it much in the classroom)</li>
<li>adult support during field trips (her nurse)</li>
<li>access to the bathroom whenever necessary</li>
<li>to eat or drink when needed</li>
<li>absences, early dismissal and tardy days without penalty</li>
<li>alternate arrangements for classroom time missed due to school outbreak, hospitalizations or illness. school will provide a teacher into the home for 6-8hours of instruction x week missed of school.</li>
<li>wear a face mask to protect from germs</li>
<li>school will provide an immediate update anytime their is an influx in illness in the school (cold, flu, virus etc)</li>
<li>permission to switch to 1/2 school days if we find the full day is too much </li>
<li>special transportation to and from school and during field trips </li>
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I admit, I did get upset during one point in our meeting. My emotions were just too heavy to hold back and silent tears found their way dripping from my chin. I had walked into the room fighting so strong for Annabelle to get the individual medical care she needs because she is so unique.. but when the time came to discuss transportation and her wheelchair, suddenly I found myself resisting those accommodations. This is pathetic, I know, so please don't judge... but the vision I have for my little girls, both of them lined up waiting for the bus on the first day of school is forever gone. That day that I dreamed about when Mady would take her baby sister under her wing and sit beside her on the bus, and when they get to school she would make sure her sissy gets to her classroom okay - that isn't our reality. Our reality is that Annabelle will wave as her sister and all her friends get on the school bus in the morning and Annabelle will wait alone for her own special needs bus that can transport her in her wheelchair. She'll be alone. Her experience will be vastly different than what I want for her. I want her to have as normal as possible of a school experience as she can, but still remaining safe. I don't know... the words I type ramble just as much as the thoughts in my head, but my heart is hurt. We continued the conversation about the special needs transportation and then carried it over to field trips - on those occasions too, she won't be permitted to ride with her friends, she will ride alone on the special needs bus and meet with her class once they arrive.. Their first field trip is to the pumpkin patch, and I thought "There's no way she can ride around in a wheelchair to the pumpkin patch. And even if she walks, there's no way she can make it the hours they will spend there... the first field trip of Kindergarten will be a disaster" - and my heart sank again. </div>
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All things considered, AK and I are happy. We are so relieved that Annabelle will get the opportunity to have a classroom experience just the same as the rest of her friends, but we are cautiously nervous. I am terrified beyond belief over the germs in the school and how she will handle the cold/flu season.. and my mommy heart panics for her as she will for the first time be thrown into a classroom and big school.. surrounded by kids in the hallways, lunch room, recess and extracurricular activities and she'll be in a chair. she'll be wearing a face mask. she'll be hooked up to feeding pumps. she won't have the energy and endurance to keep up. My heart hurts that she will identify herself as vastly different and be ashamed and discouraged of who she is. These are all thoughts she communicates openly with us and it kills me. I want her to have fun, I want my baby girl to laugh, run and play. I pray with everything that the kids are not cruel but are welcoming and loving to her. Kids can be so, so mean and Annabelle doesn't deserve that type of judgment at this point in her life. I want her to shine and excel, I want to see her confidence burst. </div>
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We are happy and we won a huge battle this week... but now, I'm scared to death. I wish I had as much courage as Annabelle... </div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com2tag:blogger.com,1999:blog-6582560550294418738.post-38088780204643474762016-08-17T07:02:00.002-07:002016-08-17T07:07:03.091-07:00Planning our next round in CincinnatiWe have multiple appointments that we're working to get on the books.. multiple appointments and also multiple procedures.<br />
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Most the procedures Annabelle needs performed will be done while under anesthesia, so our mission currently is to work on the coordination of that.<br />
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I called Dr. Putnam's office to speak with our GI / EoE Clinic Team and schedule our next upper and lower endoscopy. They informed me that Dr. Putnam is pushing Annabelle to the Neurogastroenterology and Motility Disorders Clinic.. we discussed this before but I just wasn't quite prepared with the fact that we would be exploring more Gastrointestinal disorders. I knew it was happening, it just sucks to face it.<br />
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Our doctor at the Motility Clinic has already ordered tests for Annabelle. The first of which will be an outpatient procedure (that the nurse over the phone warned me, she will HATE). It's called an Anorectal Manometry. Annabelle will be awake as they insert a camera, balloon and tube into her bottom. They'll inflate the balloon at various places thru her colon and large intestine to measure the strength, sensation, movement and reflexes she has to what would feel like stool. If she doesn't respond to the balloon, than we know there is a problem that lies in that specific portion of her intestine / colon. They'll then move to another portion and keep testing. The procedure takes approximately an hour but this will give the doctor an idea of where her body isn't working and allow him to pinpoint which areas he will treat.<br />
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The next procedure the motility specialist wants to perform are botox injections into the anal and rectum sphincter to promote the nerves to begin to move and function again. This procedure will be performed under anesthesia. Before he can begin though, he will also dilate all the problem areas to ensure the botox is reaching each area it needs to work.<br />
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Other tests that will be performed while Annabelle is under anesthesia are the Muscle Biopsy and also Upper Endoscopy. Therefore, it's taking a lot of leg work to coordinate three surgeons for one patient at the exact same time: Gastro, Motility and General Surgeon.<br />
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Those are our main procedures (so far) that we need to perform during our visit. However we are also scheduling with:<br />
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<li><b>Human Genetics</b> to discuss the exome genetic testing. AK and I will be tested as well as Annabelle during that time. I'm not certain what those outpatient procedures are quite yet. </li>
<li><b>Dermatology</b> for the bumps and rashes all over her skin</li>
<li><b>Sleep Clinic</b> to follow-up from the sleep study we performed in April. I know this doctor also wants labs performed and belle will require some cardiology tests before starting the medication they want her on (if we choose that route). </li>
<li><b>Cardiology</b> for an EKG and Stress Test, this is a requirement before the motility team can perform their tests</li>
<li><b>Neuromuscular</b> as a followup from our last visit and to discuss the muscle biopsy that she is ordering. Dr. Tian strongly believes still that we are nearing either a Mitochondrial or Metabolic diagnosis. I hope this muscle biopsy gives an answer. </li>
<li><b>Motility Clinic</b> in the beginning of the week so they can meet Annabelle in person and also talk with us about their plans for the week. We will have a follow-up at the end of the week to discuss all the findings and how the surgery went etc. </li>
<li>and of course,<b> Gastroenterology</b>. We will consult with Dr. Putnam before and after the surgery and when the biopsy results come back. We are praying that our numbers are going down and the EoE isn't progressing more than it showed in April. Our instructions (since we are in the middle of a lot of testing) were to do nothing with Annabelle and pray with everything we have that the EoE remains calm until we can get our testing completed and figure out what is going on. </li>
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So while we are trying to work and coordinate these appointments, we are also working full steam ahead at home re: Annabelle beginning school. Her team at Cincinnati was quite frustrated about the school not honoring an IEP, so I have been digging into my own research on what I need to be fighting for when it comes to Belle academically. Fortunately, we do have the blessing of an entire nursing team behind us here at home. The nursing agency our nurse works with is wonderful at advocating for their patients / kids, so I have leaned on them a bit for guidance. So we'll see where that takes us :)<br />
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For now, it's been school supplies shopping... 36 glue sticks, 60 pencils, 8 composition notebooks, (Im seriously not kidding on any of those) and of course, new school shoes!<br />
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Our appointment with the school is next week and hopefully by then I would have heard from the hospital about a date when we will return to Cincinnati. I just hope it isn't around the holidays again.. Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-74723279432795225152016-08-12T12:57:00.002-07:002016-08-12T12:57:45.653-07:00An emotionally exhausting Cincinnati day<div class="separator" style="clear: both; text-align: center;">
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I flew home as fast as I could to finish packing our last minute things. Annabelle was laying on the couch and just watched as I made passes by her over and over. She knew exactly what was going on. My mom and grandmother came to say goodbye to us before we left, but Annabelle didn't want anything to do with either of them. She just watched cartoons and lied down on her blanket. </div>
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I packed two piles. The first pile was everything our family would need during our 3 day Florida trip with friends. AK would be loading the car with those bags and hitting the road first thing Wednesday morning. The other pile was the carry-on bag for Annabelle and I to go to Cincinnati. It had to hold everything we would need for two days, including all her medical supply. I knew that from the moment I left my house until noon the next day, I would be carrying her everywhere so packing a bag was very strategic. Before hitting the door, I went to my bedroom and took multiple deep breaths.. a fast shower and ran downstairs to find my mother and grandmother mischievously planning... mom somehow talked our grammy into a spur of the moment, no clothes or bags packed, road-trip with me and Annabelle to help make the trip easier for us. (Easier? Not sure. More fun and great distraction? Absolutely.) Before I knew it, I was saying goodbye to AK and Mady and Annabelle were standing in the driveway whispering to each other and hugging for extra long periods of time as they said their goodbye's. They argue often, but when it comes time for Annabelle to have to go to Cincinnati, they both lean on one another and share into that sisterly bond. I kissed Mady, picked Annabelle up, and the four of us loaded into mom's tiny sports car to head to Alexandria, VA for the night. </div>
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We stopped at Joe's Crab Shack to avoid the rest of Fredericksburg and NoVA traffic.. the night was perfect. The drinks were delicious, Annabelle was able to play while we ate and the food... oh, the food was steaming perfect! </div>
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I couldn't sleep Tuesday night. I knew we needed to leave before 5am and was worried we would oversleep. I was also scared to death all night about not feeding Annabelle and how she was doing. She tossed and turned a lot but didn't wake much. Mom and I got up shortly after 4am and began to get ready. I dressed Annabelle and could immediately tell she was weak already. The airport wasn't far away, mom dropped us off and we made our way to our gate. Annabelle didn't walk at all. She didn't want to even stand while we waited to board the plane. In between begging not to go to Cincinnati, she would take short naps, wake up, cry, and go back to sleep. It was a hard flight... <br />
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Our plane landed right on time. As I carried Annabelle, for what felt like 3 miles, across the airport from our plane to Enterprise pick-up, she begged and begged not to go to the hospital. I hardly responded. At this point, engaging in the conversation just gives her false hope that she has an opportunity to negotiate out of the inevitable. We boarded the shuttle to enterprise and she began begging again, in front of everyone as they stared at me... I felt like I stood 2 inches tall and all I wanted to do was break down and cry just as hard as she was. I want her to see how much this is killing me too, but I can't. Being strong but sensitive, tough but compassionate is. so. hard!<br />
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Once we got our car, she fell asleep. Fortunately, she was too weak to continue to fight and cry. Our drive was about 30minutes and I swear she was asleep within the first 5m. Thank. Heavens! It gave me a few minutes to pull myself together. Breathe and freshen up from the hustle of the morning.<br />
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As soon as we arrive at the hospital, it began all over again. This is when I see that diagnosis of "anxiety". It's in full motion as she panics, her head whips from left to right, her breaths are shallow and weak, her voice is shaky and her eyes are so deep and dark with sadness and defeat. We sit in the waiting room and she won't even sit beside or look at me.<br />
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She sobs, "Why are you making me go mommy? Please, PLEASE let's don't go to Cincinnati. I don't like the hospital! Why do you always make them hurt me? Please MOMMY!!! .. please . . . . . . I don't love you, I'm not your friend anymore"<br />
..... she has no one anymore.<br />
She's completely alone, in a huge city with her mommy and not one person is in her corner to protect her. I look into my daughter's eyes and can see clear as day how much I am damaging her, and there's nothing I can do about it. I will never be able to repair this emotional trauma. She's pleaded for hours, Ive tried talking and explaining to her why we have to do these things, she begs me not to hurt her and I do exactly that - I drive to a hospital, carry her inside and hand her over to a nurse who will then bring in a friend as the three of us hold her down and do exactly why she's begged not to happen.<br />
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The lab draw was quick and painless. She got it on the first stick but did have to do some digging to find the vein. Annabelle never pulled away. She screamed for us to stop all the way until the needle was in her arm, but then she held still until it was over. They also needed a urine sample. After the blood draw, we tried to do that but she didn't have to potty.. I agreed to take the specimen cup with me and collect next time she potty's and just drop it off to any of the three hospitals we would be visiting over the course of the day. <br />
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Afterwards, we headed to the next hospital where we would pick-up her wheely-chair. I hoped it would boost her spirits since the bad part of the day was behind her, but that's the thing with depression, trauma and kids that suffer this life.... shiny distractions hardly work anymore. Without a doubt she was happy that we were picking up the chair (and so was I, my arms were nearly ready to fall off from carrying her everywhere), but the exhaustion of defeat was just far too heavy for her to force a smile.<br />
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These are the moments that kill me the most. <br />
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After making some adjustments and mechanical fixes to the wheelchair, I signed our $8,000 bill and we left. Annabelle wouldn't eat any of the snacks or drinks I had for her and I knew she needed a feeding ASAP so we decided to have a lunch together. Perhaps it would cheer her up? Not the case. I did hook her to a pretty fast feed, because she needed it. But it made her nauseous.. she was then mad at me for feeding her and making her tummy hurt. It was a lose - lose kinda day. Fortunately, right after lunch, it was time to head to our third and final appointment of the day = Human Genetics. The appointment was across town so Annabelle fell asleep on the drive. We got there early and I sat in the car and prayed before going inside. <br /><br />
<div style="text-align: center;">
<i>Dear God. Hear my prayer, please. </i></div>
<div style="text-align: center;">
<i>I am broken.</i></div>
<div style="text-align: center;">
<i>I am shattering with every grain of salt this journey is pouring into my wounds.</i></div>
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<i>Why did you give me a baby so broken? Why do you think I am strong enough to make it thru this? What is the purpose of torturing this innocent child? and hasn't it been enough?</i></div>
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<i>I can't see clearly anymore. I can't tell the difference between fighting for my child and protecting her from the cruel world. </i></div>
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<i>I can't feel anything. My words, patience and judgement to all those around me has become so jaded and callused to anyone's feelings. </i></div>
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<i>I know I am strong, thru you. But I am so weak in my own knees. </i></div>
<div style="text-align: center;">
<i>I used to parade with confidence and now I question every decision I make. </i></div>
<div style="text-align: center;">
<i>Please, give me the clarity, knowledge, wisdom and love that I need to continue to take care of this baby girl.. because I don't know if I have it anymore.. and Annabelle needs a mommy that does. A mommy that can <b>feel</b> the love she gives to the world, a mommy that can <b>see</b> the progress she is making or the ailments I need to recognize to help her doctors continue to care for her. She needs a mommy that can make only the best decisions for her. My family needs me God, and this journey is tearing me apart. </i></div>
<div style="text-align: center;">
<i>Help. </i></div>
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I was so weak when I looked at the clock, it said 1:20pm. Our appointment was at 1:30pm and I knew I needed to pull myself together and get inside for our appointment. I re-assembled the wheelchair, gently woke Annabelle and we made our way inside.<br />
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Dr. Burrow's is wonderful. Our appointment was every bit of an hour and a half of talking, discussions and planning. When we arrived, he already had an idea of what he wanted to happen and where our next steps needed to be. He did an evaluation and exam with Annabelle (confirming again her Hypermobile and Hypertonic Joints), we reviewed past labs and talked about the progress she's made as well as her global decline. He ordered that it's time we complete our Neuromuscular DNA Sequencing Panel and also prepare ourselves to begin what we've been working towards - Genetic Exome Testing. (!!!)<br />
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When we return, AK and I will sit down with Dr. Burrows and have a heavy discussion about the testing. The positive in doing this type of test is that we may finally get the answer we've been looking for, the diagnosis for Annabelle's global issue. But the downside, is that we will also likely get a lot more information about our baby girl that we haven't bargained for ... and my never want to know. This testing comes with a price, (not just literally, because yes, it does, and it will likely be cash as hospitals and insurance do not pay for research and testing like this.) Learning Annabelle's genetic story requires deciphering all possible gene interactions. We may learn about disease-carrying mutations that she has... terrifying diseases she could carry but never develop. Or diseases she can pass onto her children. We may learn about much more that is hurting her that we never imagined or may learn that she has multiple precursors such as cancer's, huntington's etc. More importantly, AK and I will also be tested in order to cross reference her DNA with ours to verify a positive diagnosis. This means, AK and I will find out which of the two of us passed on whichever gene that is hurting Annabelle.<br />
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All of these are burdens that I imagine will be unbearable to live with. The thought itself makes me ill.<br />
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When we talk with Dr. Burrow's at our next appointment, we will discuss just how much information we want to LOOK for and how much information we want to KNOW when we get the results. In the meantime, we have a lot of thinking to do...<br />
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I left, once again, feeling more exhausted than hours prior. The message and quotes on the walls as we were leaving, made me stop. I read each of them to her as we left... I needed to read those as we walked out of the hospital for the last time of the day.<br />
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Annabelle and I stopped for a bottle of water for her, and a terrible-awful-beverage choice for me.<br />
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The trip to the aquarium was intended to be fun. We had a few hours left of the day, Annabelle still had not gone potty so I was still walking around with an empty specimen cup (we never did get a sample. She didn't potty for the first time all day, until late that night). I kept pushing fluids and she was just still too weak. The fasting took a huge toll on her body. I also think she was being slightly spiteful and holding it because she was still so mad with me. The aquarium itself was beautiful as always. I tried picking Belle up to let her see the things in the top windows, she didn't want me to touch her. I offered to do face painting (and I even told her I would get mine done too!) it didn't work.. <br />
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This is the face of "broken" :( <br />
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As we walked around, hunting for a blowfish in every single tank, an employee came up to Annabelle and asked why she looked so sad. Annabelle told her it was because she has boo-boo's that won't go away and we keep having to come here to get pokes. The poor employee forced a smile and said, "let's go find more blowfish", and she led Annabelle towards another tank. Within a few minutes, the manager approached Annabelle on one knee and asked if she likes penguins, she halfway smiled. We took the giant elevator to a special room at the aquarium and inside the room were a bunch of little penguins. It sure didn't work to break the sadness from her heart, but it did bring a smile to her face as they squawked at one another and she got to pet them. <br />
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Finally it was time to head home. We dropped the car back off at Enterprise, shuttled to the airport and had dinner. As we were approaching security, I told Annabelle that before we get on the airplane to go to Florida, she had to smile. Because noone is allowed to go to Orlando, Florida without smiling all the way there. It worked... she gave me a smile, waved two thumbs up for daddy that we were on our way and we headed to board the plane. </div>
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As she laid in my lap on the plane that night, I watched the clouds pass by us. </div>
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<b>Belle told me we were in heaven. </b></div>
<b>I feel like we're in hell. </b><br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-20573159845047924902016-08-02T12:14:00.001-07:002016-08-02T12:14:30.445-07:00Change of plans<div style="text-align: center;">
<i><span style="font-size: large;">"Mommy, I'm scared. I don't want to go on an airplane and I don't want to go to Cincinnati. I don't want to go to anymore hospitals or have a tubey and I don't want a wheely-chair. </span></i></div>
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<i><span style="font-size: large;">I want to be 5 and not sick anymore, please. Please mommy."</span></i></div>
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We have hit a point that she's clearly identified herself as different. She recognizes how unique her body is from others her age.. and now that school is on the horizon, she is searching for opportunities where she can be 'normal' and pretend she isn't as sick as she is. We negotiate with her as much as we possibly can, while still maintaining the necessary care she requires to keep her 'safe'. But it's hard. It's hard to negotiate a pizza slumber party at a friends house when she can't eat pizza OR spend the night away from us. It's hard to talk about the school bus and school activities when she can't ride the same bus as her sissy and friends and she won't be able to participate in recess and P.E. She wants, begs, pleads and cries for me to allow her to do these things.... all the while it's her own little body that fails her, but she blames us (me specifically).<br />
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As the time to travel back to Cincinnati for our 'quick trip' to pickup her wheelchair nears closer - I contacted a few doctors to try to make the most of our trip. That apparently, opened a can of worms. Here's what I have discovered... try to hold on.<br />
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A year ago, we saw Human Genetics and Dr. Burrows explained what we already suspected, Eosinophilic Esophaghitis is NOT Annabelle's leading diagnosis. There is a global issue with her body, likely genetic, and in order to treat/control the EoE, we need to first determine what the overlying issue is. The best way to find this answer, is to study her Genetic DNA to find the defect. However, looking for an issue in DNA is literally like looking for a needle in a haystack. So, what we do is try to narrow in which areas of her DNA we believe would hold the answer.<br />
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Think about DNA as a mile long strand. Each section controls and impacts different functions of the body. We know she has an auto-immune disease, so we retain that section of DNA, we know she does NOT have Downs Syndrome for example, so we eliminate that section. The more we can confirm and/or dismiss, the more specific and closer we can get to where we believe we can find the defect. In order to narrow in where we want to look .. we go 'shopping' with other doctors, seeking their opinion and perspective. And that's what we've done, for a year, we've shopped.<br />
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She has an issue sleeping: Visit the Sleep Clinic<br />
She has very little endurance: Consult with Neuromuscular<br />
Her behavior, attention and attitude is a concern: Meet with the Neuropsychological team<br />
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Our Geneticist coordinates who we will see, we visit that team, gain their perspective on Annabelle from their expertise, if they determine she has a supporting diagnosis from them or they see an issue that could help pinpoint our answer in her genetic DNA - than we collect that information and keep moving.<br />
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So for a year, that's what we've been doing. That was our homework in order for us to get an answer to save Annabelle.<br />
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<i>Side note, if you weren't following last year: We had three options. 1) Take Annabelle home, enjoy our time with her and pray that she can have a wonderful quality of life for what we have left. At the time, Annabelle was gravely ill and as her parents, 'giving up' has never been an option. 2) Begin the testing immediately. It would take years and years and insurance will not cover any part of the research. The team studying her DNA wouldn't have the first place to start and there's a chance we would lose Annabelle before they ever even found an answer. Basically = lots of money that we don't have + little promise to finding an answer. 3) Put Annabelle thru a series of testing and assessments so we can have the best information available when we choose to go forward with the DNA testing. Thru the series of tests/assessments, we will also begin to work with teams of doctors that will be able to help Annabelle and recognize concerns that we otherwise may have never been able to support and help her (aka, ADD / Anxiety / Depression diagnosis, Encopresis diagnsois, Limb Movements in sleep which keep her from getting rest, wheelchair to help her gain more independence vs sitting on the sidelines because she can't keep up). We choose to go with option 3. It allowed us to continue moving forward to improving her quality of life AND we are still on the same path to one day gaining Annabelle's 'Global Diagnosis'. Once we discover that, we will be able to treat the global issue and in result, hopefully control everything else that is hurting and damaging her body. Our only hope in saving and helping Annabelle is by getting that diagnosis. Every minute in between then, is sheer prayer and Belle's fight and determination. .. .. .. .. also, I hate to even share this disclaimer, but there's also the chance that they STILL may not find the issue. Our entire team believes we will, but they do communicate to us, that it's still a needle in a haystack effort. We're giving it our best shot to finding it by doing the leg work, but at the end of the day, it's still an incredibly expensive, incredibly long process and zero GUARANTEE. We are okay with those odds. It's still the best option for our family.</i><br />
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Back to our trip.<br />
I called and wanted to schedule with our Genetics Team just to make sure we were still on track with our 'homework' and determine if there are any additional tests/consults they want us to perform when we return for our next planned surgery in October.<br />
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That began a spiral of even more 'homework' aka labs, procedures, tests etc. Our Geneticist learned how badly Annabelle relapsed in April and he's determined to keep the ball moving as quickly as we can. We don't have an explanation for why she relapsed, which is scary bc if we didn't cause it than we can't make the change to get her back into remission. Based on the findings with Neuromuscular, the strength in her legs and hips are deteriorating which tells us that whatever is happening, is spreading.<br />
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He wants a muscle biopsy done ASAP. In order to do that, Annabelle needs an Echo-cardiogram and EKG, but they want that performed with their own Neuro team in the Multi-Disciplinary Clinic where we'll consult with Pulmonary, Cardiology and the Pediatric Surgeon. Before we do THAT however, we need to have a slew of labs drawn. Labs that have to be drawn after Annabelle has been fasting. We did a lot of labs the last time Belle had surgery (bc she has to fast prior to surgery of course), but they weren't the same as what this team is looking for. I believe they need a full Metabolic Panel, seratine, carnatine, acid, DNA extraction etc etc levels. (I can't speak labs. I can speak medical, but I do not speak labs lol).<br />
Regardless, we have a problem. I haven't had Annabelle fast alone with me in years. The last time she did, we had serious problems and landed in the hospital where she could barely regain consciousness. Thus the reason why we have to be admitted every 3 months prior to surgery. In the hospital they monitor her better, she remains on IV fluids, glucose etc and exerts very little energy as we wait for surgery. They want me to begin having Annabelle fast tonight, get on a plane tomorrow, and then wait several more hours and we draw labs. Holy guacamole, PANIC! I'll be completely alone with Annabelle, 3,000 feet in the air and unable to feed her, give her medications, or care for her and just pray like a crazy person that she can make it to the hospital in Cincinnati before giving me a full on heart attack.<br />
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I agreed to do it.<br />
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I know, I'm crazy. So please, pray for Annabelle's safety tonight and tomorrow. Just pray that we can make it to Cincinnati Children's as quickly and smooth as we possible can. Once we are there, I will exhale until the labs are drawn and I can hook her up to feeds again.<br />
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Second scheduling nightmare that I've run into is a little preliminary.. looking ahead at surgery in October, we need to perform her routine upper and lower endoscopy, but our GI doctor wants the Motility team with us in the OR. Their team is interested in Annabelle on the Encopresis side of things.. they want to do an Esophageal and/or rectal Manometry and perhaps begin botox treatments if necessary, to encourage her lower GI to begin working on it's own again (we've been flooding her with so many drugs daily since April, that her lower GI hasn't worked on it's own for months). Since we will already be in the OR and under anesthesia for all these procedures, I am requesting that we wait for the muscle biopsy for this time. It's ideal for Annabelle (from an anesthesia standpoint only), it'll be very painful because of all the procedures they'll be performing, but it's also a scheduling nightmare because I have to coordinate so many surgeons at one time for her. This is something I will simply be continuing to work on.. but it's certainly in the pipeline and is causing daily phone conversations to take place already.<br />
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I know that was a huge update, I apologize for the confusion. But I did also want to share how the meeting at the school went.<br />
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We met yesterday with another large team, where they read to us all their findings during the numerous assessments they did with Annabelle. Every single one of them concluded the EXACT same findings as those in Cincinnati (I hate this for Annabelle.. to have to waste her time to go thru it all again). I wasn't surprised in the least but I guess we just have to go thru the motions. They did not honor her an IEP because they claimed her medical needs do not make an impact to her academically. I disagree whole-heartedly. For many reasons I disagree, but I am okay with it.. for now. Fortunately, they did agree to offer a 504 Plan. This is what I prayed we would get. The entire meeting though, was simply to share with me the findings and the plan = 504. We have to schedule yet another meeting to outline the 504 specifically. At that time is when we will discuss whether or not they'll allow Annabelle's nurse to accommodate her in school. I stated one final time at the table, that it isn't negotiable to not have our hired nurse with Annabelle. She explained that they'll have a representative from the county to be part of that conversation. I encourage it :)<br />
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So the meeting wasn't terrible. It wasn't bad, it was fair. I feel as though they got a great assessment of Annabelle thru their meetings with her (all our reports and explanation gave them the same information but they wanted to learn for themselves and I'm glad they were able to get it.) I look forward to our next meeting in a few weeks, and so does Annabelle, i'm sure.<br />
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Tonight, I will finish packing our families bags and Annabelle and I will head towards Washington DC. We are getting a hotel for the night so that we will be near Reagan Airport for our 6am flight tomorrow morning. Once we get to Cincinnati, I'll pickup a car from Enterprise and we'll head to the first hospital. There we will wait for the lab draw with the IV pit team. After that we have an appointment at the hospital down the road for the Wheelchair Clinic where she'll do her last fitting for her 'wheelychair' and then we take it home. From there, we will drive 30mi North to Mason, Ohio for the appointment with Dr. Burrows in Human Genetics. Afterwards, I am praying we will have a smidge of time to go to the aquarium before heading back to the airport. Our flight leaves at 8pm and will take us directly into Orlando, Florida where AK and Mady should have arrived via car and we will spend the next three days with some of our favorite friends. Sunday morning we will all drive back home to Virginia. Monday, back to the grind :) WHEW!!<br />
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Keep our family in your prayers if you would. Please. Pray for comfort and the safety of Annabelle as we begin to have her fast tonight, pray for a peaceful nights sleep in the hotel and safe flights tomorrow. Please, pray that her body is able to stay within safe ranges that she makes it to the hospital before we're in danger from fasting. Pray for comfort and clarity for my mind tomorrow as I travel hundreds of miles alone with my baby. Also, please, keep AK and Madelynne in your thoughts as they drive the 600 miles to Orlando where they'll meet us late tomorrow night. It will be a very long day for our family and we appreciate your love, prayers, well wishes and never-ending support for our little girl. Thank you, so very much friends.<br />
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xo Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-30947219693023348562016-07-18T22:31:00.000-07:002016-07-19T12:31:44.943-07:00Quick Update <div class="separator" style="border-image: none; clear: both; text-align: center;">
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It's funny how this journey plays with your mind and emotions, how we become callus to information and feelings but still somehow are hurt by others cruel opinions and statements. Between all the chaos, we find our own little niche on a scary path. We learn that only ourselves and our private thoughts are trustworthy. </div>
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Annabelle is blessed to have such incredible prayer warriors that love her unconditionally. Our family could never put into words how grateful we are for each of you. But please understand, at times the more information we share on our little girls condition and her fight, the more we expose ourselves to criticism and opinion on how we should be caring for our little girl. That being said, we enjoy most, being able to share our victories with you guys, pictures of her having fun and how she's doing and updated on where we are. </div>
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Annabelle is sick, her diseases are not getting better, going away or slowing down - we are just controlling them the best we ever have. We are collecting more diagnoses with every test we perform but we're barely getting closer to discovering her Global Diagnosis. We need this diagnosis to save our Annabelle, but gosh it's such a SLOWWW process. We don't have the time or patience for 'slow'. So please, bare with us - continue to pray for Belle even when I can't provide an update, bc often I don't have an update to share. I only have a worried heart, sick little girl, needy family but adorable pictures to offer. So if our posts are only that, please bare with us and keep praying. I do believe that one day we will gain her diagnosis, we will find the best doctor to help her and we will all breathe a little easier. Until that day, let's celebrate every victory together and love this fighting little girl!</div>
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Lately, Annabelle has been crying and begging for 'normalcy'. She has tantrums more now than EVER about how excluded she is from her sister and friends. She gets so frustrated that she can't swim/play/run as long as others because she tires too easily - for that, I cannot WAIT for her wheelchair!!!! <br />
She's also had a heavy heart over foods, snacks, treats, drinks etc. One of which was pizza. She's wanted pizza so badly so I found a place that had safe ingredients and other moms have promised they are allergy safe. Annabelle had a whole wheat pizza with tomato sauce, avocado and olives. It was her first very own pizza and she couldn't have been more happy. She ate one small slice, and then ended up in the bathroom for nearly 45 minutes in pain and nothing staying in her little system. Since then, she's cried that she never wants pizza again because her "tummy's boo-boo's don't like it". Now, im on a mission to figure out how to make one of my own that should be safe. <br />
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<span style="font-size: large;">We're headed to Cincinnati in two weeks. (YAY!)</span> </div>
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<strong>Monday, August 1st </strong></div>
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We have our 504 / IEP meeting with the Elementary School to determine whether or not the school will accommodate our nurse and how we will proceed with Annabelle's needs being met in the classroom. My prayer every day is still that the school will make the best decision for Annabelle and that we can all come to an agreement on what she deserves. The only thing that I am standing my ground on, is that Annabelle will not attend school without her personal nurse. I do not see why this should be an issue, but our prayers are that everything does fall in line and works out.</div>
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<strong>Wednesday, August 3rd</strong></div>
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Annabelle and I will fly from Washington DC and land in Cincinnati Ohio at 8:35am. We have an appointment with the Wheelchair Clinic at 10am where Annabelle will be fitted into her brand new, custom built wheelchair. They want to make sure the chair is a perfect fit for her and all adjustments are specific to her size and that she's able to maneuver it well on her own before we leave with the bill. (hopefully they'll also show me how to break this thing down to fit into my car!) </div>
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While we are there, I am also trying to schedule a consult with our GI doctor to touch base with him. We need to speak with Genetics to ensure our next visit in October will cover all tests that we need to do while were there. I would *love* to meet Motility but I know we can't get in.. their wait list is far too long. We do also need a follow-up with the Sleep Clinic from the Sleep Study we did while we were there last. That final report showed "88 episodes of arousal during sleep" and "78 PLMs noted". She's been given a diagnosis of 'Periodic Limb Movements Disorder', which could be the explanation of why Annabelle twitches a bit, never sleeps a full night without multiple periods of waking up and has daytime impairment where she's exhausted and falls asleep during passive activities. I would like an appointment to discuss our next steps/treatments for this new disorder.</div>
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In addition to those departments that I am waiting to hear back from, we also need to see Dermatology. The bumps that are covering Annabelle are unbelievable. I am terrified of this appointment for her. I hate that they're going to freeze/burn them off - she has over 40 bumbs at this point and they're all over her body. I don't want to hold her down for that procedure :( But it needs to happen.</div>
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Because I know I am asking for such last minute appointments, we may only visit the Wheelchair Clinic for the day and then spend the rest of our day together and visit the zoo or the aquarium :) We are scheduled to return for major procedures / appointments and another surgery in October, so if we miss our doctors in a few weeks, we will just catch them next time.</div>
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Later that evening, we will catch a flight from Cincinnati Ohio to Orlando Florida where we will meet daddy and Madelynne for an exciting 3-day visit with our friends in Florida. </div>
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I am so excited for Annabelle to finally get her wheelchair, it will bring her so much independence as a little girl and provide such relief from having to walk. I know she's looking forward to it and so are we :) </div>
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The summer is flying by! I wish time would slow down, don't you? I love spending the evenings by the pool with the girls. I love the long days of sunshine and cookouts. Time is moving just way too fast , and I wish it would slow down.. before we know it, the Christmas tree will be going back up ! </div>
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-9561731467679143832016-06-29T22:37:00.000-07:002016-06-30T12:37:52.194-07:00My ABILITY is stronger than my disability<i>Since returning from Cincinnati, our hearts and spirits have been quite down in regards to Annabelle and her continued struggle. For years we have fought and exhausted our energy into finding better doctors, treatment plans, solutions and strategies to help her fight and conquer this battle she's been given. We have done our work, to the best of our ability, we've given Annabelle what we believe the BEST we can give her... but to learn that the disease is still out of control, we still do not have a definitive diagnosis and she is still in pain, it's exhausting and disheartening. </i><br />
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<i>As parents, we will walk to the end of the world for our children, but what happens when you do and it still doesn't save them? </i><br />
<i>What happens when you pray so hard and so long but biopsies continue to come back worse? </i><br />
<i>What happens when you spend every dollar you have for the top-notch hospitals, care and supplies, but she still suffers? </i><br />
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<i>If you have the answer, please share, because we're lost and broken-hearted.</i><br />
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All we know to do though, is enjoy life. We are striving to make life as 'normal' as possible, in the realm of our 'abnormal'. Annabelle wants to play T-ball like the rest of her friends? Well.. we bought the uniform, daddy coached, and she played T-ball. Albeit, she spends more time laying in my lap on the bleachers or sitting on the bases because her energy is too depleted to run; but she wears the uniform and she cheers with her team.<br />
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Big sissy is joining the swim team for our second year in a row - Annabelle wants to learn to swim better too.. so, Annabelle joins swim team! Is it reckless? Nah, not too much. Swimming is a great sport for her. It allows her to exercise DIFFERENT joints and muscles in her body and takes the stress and deterioration away from her hips/legs. When she tires, and she does very easily, she goes to lay on the chair under a towel and takes a nap while the rest of her team swims.<br />
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Madelynne and Annabelle love being on the same team together, not many sports share a team for all ages but swimming does. They of course compete in different heats bc of age, but our Swim Meets are the same night, their uniforms match and they cheer on one another from the side of the pool. Annabelle enjoys swimming and she's great at it. She's a fearless 4 year old, FEARLESS, so getting her in the pool and teaching technique was a breeze. It's both the Bishop Girls natural calling. <br />
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<i>Annabelle about an hour after a swim, she didn't have enough energy to walk much, so she couldn't do her next 'heat' in the backstroke. We spent the evening walking around the pool instead :)</i><br />
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<i>Annabelle with her nurse, 'Ms. Pat'. The two of these beautiful ladies are simply inseparable. </i></div>
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Our goals, from this point forward, are to live life as 'normal' as we
can within our constraints. To allow Annabelle to enjoy life to the
fullest and to continue to surround her with comfort, love,
compassionate friends and celebrate our small victories. <br />
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<b>SCHOOL</b><br />
I have to be honest, this is a hard subject and pretty much the reason why I haven't updated the blog lately.<br />
Without going into much detail, because I do love our Elementary School that Mady has attended for two years, but were struggling with their cooperation and our needs for Annabelle. Our initial meeting with the school left our family walking away with significant fears. They were clear that our nurse staying with Annabelle during school hours was not permitted and that they wanted to conduct all their own testing to determine whether or not she warrants a nurses care while at school. Annabelle has been thru a battery of tests, all her life, and the very first thing I told them is that it is my wish is to not have to put her thru any more than necessary..... we left and were scheduled for a total of 5 different series of tests and assessments to complete between then and August 1st. We've completed two so far...<br />
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My heart sank for Annabelle. Even during preschool, if you assess her academic skills, she shuts down. She tells you "she isn't as smart as her friends, she's stupid". I hate all those words and we try to curb them - but that is her 4 yo opinion of herself. If we can avoid another person asking her to write her last name on a paper, counting by two's and listing the months of the year - all to prove she DOESN'T KNOW IT, than I will. She's hard enough on herself in school, and the series of tests they're putting on her is already putting a bad taste in her mouth about attending Kindergarten.<br />
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Medically, Annabelle absolutely, without a doubt, cannot and WILL NOT attend Kindergarten without her nurse attending with her. The schools approach was to entertain the idea of using their nurse, or bringing on another nurse to help Annabelle .... that simply isn't a logical solution. Annabelle's nurse has been with her for 3 1/2 years and knows Belle like the back of her hand; realistically, she knows Annabelle better than AK and I. We pose too many medical risks to not have our nurse Pat by Annabelle's side and as parents, we will not take that risk. This is a battle we will fight or we will not continue to pursue the public school avenue for Belle.<br />
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Wish us luck on this journey friends. This is hard and I have prayed every day that God gives me the strength, patience and insight into the Public School systems mindset that we can reach a mutual agreement on what is best for Annabelle. I am at their mercy when it comes to making academic decisions for her in the classroom (IEP / 504, etc) but when it comes to Annabelle medically, I am a pitbull in a room - I've spent almost 5 years advocating for this baby and will continue to do so the best I know how. I just pray that I am able to articulate my concerns and wishes to them in such a way they understand our families perspective and goals and we are all able to find the common goal and best plan for Annabelle. <br />
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-62330368763331659682016-06-02T18:37:00.001-07:002016-06-02T18:47:02.396-07:00Hero<div class="separator" style="clear: both; text-align: center;">
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<strong>Have you ever met a hero?</strong></div>
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They dress in entirely too tight clothing, sport a strong catchy name and sweep in to save helpless people. They're strong, not frail. They most certainly don't come in 48" 38lb packages with bouncing curls.</div>
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So how is it that this sweet little girl rescues me almost every day? Can a 4yr old be my hero?</div>
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The <strong>SHIELD</strong> she wears on the outside doesn't allow the world to see her brokenness on the inside. She looks tough and mighty, her veins are ridden with scar tissue but her adorable dress distracts you from seeing them. Her left eye and face is becoming more paralyzed but her precious smile covers it up. She has a <strong>SUPER CHARGED POWER PORT </strong>in her stomach that allows her to add a boost of extra power and nutrients while she's out saving the world. She's fueled with <strong>SUPERNATURAL STRENGTH</strong> that makes it impossible to keep her down. When she's supposed to be conserving her energy and preserving the health of her cells in her body, she chooses to pull of BMX Bike Stunts on her training-wheel-less bike, instead. Her <strong>PERSERVERANCE</strong> is stronger than the world expectations of her. She unexplainably defies the odds time and time again. </div>
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Have you ever met a hero? Because I think I made mine.. Annabelle is, without a doubt, my hero. She's the hero that I can't live my life without. She's the hero our community needs to remain humble. </div>
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This strong little girl wasn't supposed to make it to school age. Doctors asked us why we are even signing her up for school.. but, to our amazement, she continues to fight and graduated preschool last week. Friday she was registered for kindergarten. Annabelles nurse cried during the entire graduation ceremony, in pure love and admiration for how far she has come.. Annabelle and her nurse have a bond unlike anything I've ever seen. A more special and unique bond than I can even have with Annabelle, the two of them know one another and trust one another in such a way it's amazing.</div>
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This school year wasn't easy. Annabelle struggled most days to make it just 3hours in school, and although she still writes her name completely backwards and counts 11, 13, 18, 22, 23, 24.. She's still overcome more than her doctors and medical team ever gave her credit for. I am so proud of this little girl. A preschool graduation may be the only graduation she has, so it was very very special to us as a family to watch her so proud of herself. It was truly a hard, but wonderful evening :)</div>
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We met our principal, school nurse and kindergarten teacher last week during orientation. We also scheduled a Child Study for next Monday where we will meet with the school team, our nurse and AK & I to determine which accommodations we will need to make and have in place when she starts school in the fall. We haven't decided if we'll need an IEP, 504 or both.. I'm just now learning this acedemic / public school lingo and have a LOT more to learn.. Hopefully I get a good handle on it all next week.</div>
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<strong>Wheely-Chair Update</strong></div>
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It's been 7weeks since we've met with OT at the Wheelchair Clinic in Cincinnati. Based on how Annabelle's overall health is going, I think we'll need to return to Cincinnati a bit sooner than we expected, preferably in August. It would be ideal to be able to pickup our wheelchair while there so I called for an update.. They broke the news that Medicaid will not participate or cover any costs for the wheelchair. We half expected this, but prayed regardless for the help. I was sent a form to sign that I acknowledge Medicaid will not be billed for the wheelchair and we will assume the remainder of any costs. I had the option to retract our order of the wheelchair and cancel it or continue and pray like high hell our other insurance will help at least some. Of course I choose to continue, but I would be lying if I said I didn't want to get sick when I saw the total cost and then cried.... The grand total for Annabelle's wheelchair, (no power, 100% manual chair), is: $7,938.91. Im not sure about the rest of you, but we most certainly do not have that money. </div>
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Here's a quick rundown of the items on our invoice. Mind you, when you purchase a wheelchair, that's all you get, just the frame of a chair. Anything more than the frame itselt is a custom upgrade. Yes, so as you read this list, allow your eyeballs to burst out of your head and roll just like mine do at how ridiculous it is we have to UPGRADE her chair to get just the BASIC ESSENTIAL pieces that should come standard in the first place.</div>
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Wheelchair: $3,409</div>
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Footplate: $202</div>
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Spinergy Wheels: $1,061</div>
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Side Guard (to protect her hips/clothes from getting caught between the seat and the wheels): $197</div>
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Armrests: $224</div>
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Padded Calf Straps: 101</div>
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Swivel Anti-Tip Rear Wheel: $256</div>
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Posterior Back (seat back): $755</div>
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Transport Bracket: $264</div>
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Headrest Pad: $265</div>
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Seat Cushion: $432</div>
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Seat Belt: $114</div>
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Trunk Support: $99</div>
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IV Pole: $331</div>
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I don't know why the invoice left me in tears so hard, perhaps out of sheer frustration that we don't have the means to provide everything our daughter needs to keep her happy, semi-healthy and living life to the fullest - or if I was just so damn frustrated with the medical world that they rob families like ours and children like Annabelle from the necessities they NEED to survive. It's a sad, broken, corrupt medical world ... one I despise and hate being forced to live in ...</div>
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I signed the paper and faxed it back. Our chair is being ordered now and our fingers are crossed that it should arrive by August. We are hopeful that it will and we can make good use of our time while there (as we always try to do). Annabelle's body is failing fast and hard during this most recent relapse. She complains of pain a LOT, both while eating and during regular activities because her stomach is hurting so badly. She cries out in pain and is asking more and more often why she is sick and why God made her body with so many boo-boo's. She's getting older and explaining things to her is actually becoming more difficult. She doesn't settle with a simple answer any longer, she asks multiple follow-up questions and always looks for an optimistic fairy tale ending, "So when we go to Cincinnati NEXT time, they will fix the boo-boo and then I will be able to have pizza like my friends and I won't be sick anymore?" .... "no sweety....." :( </div>
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We are staying very close in touch to the team in Ohio and if things were to turn for the worse while we are here, it's understood that we will fly immediately that way where she can get the best care. For now, we are just allowing her to live life to the fullest and caring for her the best we know how. </div>
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She is our hero. Every single day she finds the energy to get out of her bed when her weakening body pleads for her to lie down. Every single day she finds a way to make our family laugh and remind us how blessed and grateful we are to have all that we do. On the worst day, a frustrating work day or traffic jam that causes everyone to run late, we struggle to give into the negativity.. life is all too short and too precious to allow anything other than joy and laughter fill our homes. Next time you're struggling, I challenge you to give a stranger a compliment, turn up the radio and sing... or if you're me, think about how much Annabelle has overcome just to be here today.. smiling.. laughing.. running and playing. When the world wants to drag her down, she laughs and skips the other way. Find the joy in everything, I promise - it surrounds you. You just have to look for it. I found mine.... she's asleep right down the hall...</div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com1tag:blogger.com,1999:blog-6582560550294418738.post-44647114768032163412016-05-12T18:11:00.001-07:002016-05-12T18:11:53.929-07:00Smiling thru the tears<br />
I've drafted about 5 different blog posts. I have posts that were drafted while we were still in Ohio and then another that I wrote on our drive home. But I cringe with every word I have to write. I want to share how the rest of our week went after the procedure, but the truth is that it was awful. I am so, SO tired of updating here just to share with you that we aren't doing well. I hate it!<br />
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Above anything, I don't want to share the post that I am about to share. It's updates like these that rob our family from the lies that 'were living happily ever after' (what a tricky lie we tell ourselves, to enjoy the moment). We wear a smile until the truth is revealed and all that happiness is stolen from us because of this awful frickin disease! I hate it, I hate it, I HATE IT!<br />
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The skinny on our update is that the rest of our trip in Ohio took a traumatic downhill turn by Wednesday morning (2am to be exact). Annabelle began showing signs of bacterial traechitis which landed us in the Emergency Room. This was a result from the surgery and the anesthesia team changing our anesthesia plan mid-surgery without mine or AKs consent. They performed a new procedure on Annabelle that we never would have approved and the result was the irritation and damaging of her trachea. Those wounds were then exposed to bacteria that resulted in an infection that her body struggled to fight. </div>
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By Thursday, we were able to perform the <strong>Sleep Study</strong>. Annabelle did wonderful while being hooked up but she hated the nasal cannula. Once that was placed and taped securely to her face, she was able to cry herself to sleep. She wanted that thing gone more than anything and we couldn't help, we couldn't hold her because of all the tubes and wires she was connected to. We couldn't lay in the bed with her because of the monitors. She had to be left alone, still and immobile to sleep the night by herself. She was still trying to recover from traechitis, coughing, gasping and moaning. God she was just a mess. It was a hard night for all of us, AK nor myself slept at all that night. </div>
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Friday was the day we ordered her wheelchair. This process wasn't as painful as we expected it to be once we got in the room. The OT and Vendor quickly led us thru the process of selecting the right chair for Annabelle. Our requirements were:</div>
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<li>Lightweight enough that Annabelle can push it alone</li>
<li>Frame can adapt to add power options to the chair later, if we need</li>
<li>Collapsible so we can transport it in our current vehicles</li>
<li>Sized appropriately for Belle now and will also last us 5 years (insurance will only allow 1 wheelchair every 5 years, so it has to fit her hiney now all the way until she's 10yr old!)</li>
<li>Versatile so we can personalize it to our needs</li>
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What we landed on was a chair called a Ti-Lite, Twist. Annabelle choose a purple frame and hot pink seat. <a href="http://www.tilite.com/chairs_twist.php">http://www.tilite.com/chairs_twist.php</a><br />
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Once we choose the wheelchair itself, then came time to customize everything that Annabelle needed for it to serve her. </div>
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<li>Transport brackets to allow Annabelle to be transported in the chair (school bus, metro, etc)</li>
<li>High back seat cushion. This is necessary when transporting and will also provide more comfort for when she needs to rest.</li>
<li>Hip protectors. To prevent her clothing, fingers etc from falling into the wheels right beside her hips (This is about the moment I began asking why the hell do chairs NOT come with most of these things?!) </li>
<li>IV Pole. To hang her feeding tubes, pumps, bags and fluids. </li>
<li>Removable, washing seat cushions. Having a child with a GI disease = lots of messes. Why wheelchairs don't come with removal seat cushions and washable inserts, is beyond me. </li>
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All these things were upgrades to the standard chair. Our #1 upgrade that we did opt to do were Annabelle's wheels. <strong>We bought our baby 22's!! </strong>haha ;) The wheels we upgraded were significantly lighter which allows the chair to become much lighter to push for Annabelle (and us) and also to lift to put in a vehicle. Since we upgraded to the low-profile, lightweight wheels, we were also able to angle them on the chair to allow Belle to be much more comfortable when resting her arms beside her when pushing the chair. You wouldn't believe the world of a difference this made for her. I am so happy about this upgrade (but holy crap, the cost was painful).</div>
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We choose NOT to add power to the chair at this time. Honestly, it's just so expensive and we can't afford it. The wheels that deliver the power were too heavy for us to lift (well me, really. It made the chair almost 100 pounds!) and, it was a bit too tricky for Annabelle to use. We also didn't like the way it forced her to position herself and her arms in the chair to use it. At a price tag of additional $7,500, we couldn't do it. </div>
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This wheelchair, while it was painful to accept, build, order and purchase; I know will provide our little girl with more independence and the cause for so many smiles to come. She will be able to keep up with her friends, play and laugh along side everyone again. As a parent, I look forward to not carrying her everywhere we go, I look forward to knowing that if she wants to play and run for a minute, that when she crashes and cannot stand that she will have her chair beside her to help keep going. As her mommy, my heart SHATTERS that my 4 year old is going in a wheelchair, but it BURSTS that our medical team was wiser than I and made this decision on behalf of our family. I know we will love it and own it, just like we do our adjusted lifestyle and feeding tubes. It will quickly become part of us . . . . the road is just a bit wee bit intimidating.</div>
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So that was the short summary of our week, except our GI Follow-up...</div>
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:sips wine:</div>
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:gulps wine:</div>
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I knew it would be bad when Dr. Putnam ignored my very first question to him: "How do the biopsies look?" He response was, "She doesn't have any active disease in her <strong>colon</strong>.. but we need to talk about it. Her colon is extremely dilated and damaged.." </div>
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AK and I anticipated this, as in her lower GI, being a large part of our conversation during this visit. We listened with open ears, but a pounding heart.</div>
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What we're dealing with is something called, "Involuntary Encopresis with Chronic Constipation". Basically, her damaged body doesn't know when to pass stool, so it holds onto it and as the stool builds up, it stretches her colon. By the time she is so 'backed up', the stool is entirely too large for her to pass on its own. In between the times she has a BM, some loose stool/fluid will leak around the impaction.. resulting in leaking stool, constantly (very frustrating for us all). </div>
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We don't have a lot of options with how to address this new diagnosis. But we choose to give it our all and attempt to repair the damage done to her colon, without having to remove it. AK and I are committed to working our asses off at home for our daughter, in an effort to avoid more loss of her poor little bodies function. Our homework is to clean out her GI system, FULLY, every 24 hours. It's been years since we've attempted to do this at home, but over the last month, with the help of a LOT of drugs, we've actually been quite successful. We are disappointed to have her back on medications, but I am relieved to see they're working and Annabelle is able to get a bit of relief. </div>
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The downside is that it takes 6 months to repair the amount of damage Annabelle's body has done to her colon. If we fall off the bandwagon and something happens to where she doesn't fully empty her colon every day, the clock restarts for another 6 months. Unfortunately, we've been given only 6 months to make substantial progress before her medical team moves to next steps of intervention. </div>
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When we return to Ohio, we will follow-up with the Neurogastroenterology and Motility Disorders Clinic where they will help us navigate our next steps in treating this newest diagnosis. Our goal is to be able to alleviate how dilated her colon already is by emptying her GI daily, and then when we meet our new doctor and based on the surgical report, we will be able to repair the damage that is already done by performing Botox Treatments to the damaged areas. That is our stretch goal, rainbows in the sunshine, perfect happy ending, goal. If we fall short anywhere below that, we are looking at removing Annabelle's dying lower GI system, just like we did to her upper GI, 2 years ago. </div>
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Then, we got on the subject that makes me nauseous to even reflect on. </div>
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:finishes bottle of wine:</div>
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Dr. Putnam: "I am really sorry. But the biopsies did show eosinophils in her esophagus and the active disease has returned."</div>
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Those are some of the hardest words to ever hear. </div>
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.. this means our mission for finding Annabelle's diagnosis has just ended. It means we cannot keep searching, testing, meeting with doctors and narrowing down our search window. We get skewed and pointless results if Annabelle has relapsed, and that's where we are..</div>
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.. this means we've lost control of her disease once again. For 10 solid, fun-filled, happy months, Annabelle was free from this disease, and now it's back. We have absolutely no idea why it's back or what has set it off. And honestly, it doesn't matter anymore.. it's back.. </div>
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.. this means a clock starts ticking again. A bashing loud, haunting you from your dreams, robbing you of laughter, fogging your wishes for your baby, awful fucking clock is ticking..</div>
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.. it means we stop, refocus, reflect and live for right now. </div>
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That's what those words mean to our family. We left Cincinnati, Ohio with no treatment plan or advice from our medical team. We came home to a quiet home, surrounded by loved ones that were happy to see us home but blind at the news we had just received. We came home to continue to live life the best way we know how. </div>
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It's been a month and we are still adjusting. Last week we took the girls rootin' / 4-wheeling in the mud. The somber depressing rain was drowning our smiles that were already hard enough to find, so we decided to make fun in a horrible situation. We took the 4-wheeler out and played. The look on the girls faces when mommy and daddy began having a mud fight, was priceless. We were all filthy, but we had such a wonderful time. </div>
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I've called the school to begin the process to get Annabelle registered for Kindergarten. Honestly, Annabelle hasn't even made it to preschool much in the last month since we've been home. She's made it to school about once or twice x week but doesn't seem to have the energy to attend much more than that. In the grand scheme, she doesn't need to go but she wants to ride the bus and be like her friends.. so darnit, she's going.<br />
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She sleeps late in the mornings and tires very quickly. Her mood is shifting a lot too, she's angry and frustrated with us nearly all the time, her patience is so thin which tells me she is uncomfortable and in pain. She cries almost every single day that she hurts, and I just can't imagine what she must be physically enduring. Her tiny body is failing her and rotting from the inside out, and all we can do is give her a hug and remind her how much we love her and how strong she is. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAqOtRyrGLJFzPiRUBOFcvcEVZEesnTV0OEYl9NAzY9nDDwl9j-39DWL2yhEtRJW5NBVgTMhc4bYLqljO1MKWZs-VDKzLCNkKkBRtBW23bNWkxclCjjJ_Lt-AIcKExU-1bawTr-aAG-78W/s1600/bd20c240269a48b9f6603200801b1411.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAqOtRyrGLJFzPiRUBOFcvcEVZEesnTV0OEYl9NAzY9nDDwl9j-39DWL2yhEtRJW5NBVgTMhc4bYLqljO1MKWZs-VDKzLCNkKkBRtBW23bNWkxclCjjJ_Lt-AIcKExU-1bawTr-aAG-78W/s400/bd20c240269a48b9f6603200801b1411.jpg" width="300" /></a></div>
I don't have any inspirational words, I don't have a happy ending to close this blog post and I don't have any promises to anyone. But I do have a prayer.<br />
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My prayer is that you love one another. That you see the best in one another, even if that means you have to dig down deep to find it. My prayer is that you don't spend your lives in frustration, guilt or anger but that you spend it building and loving the ones around you. </div>
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My prayer is that you consciously seek to find the beauty in all situations and not take a single day for granted with those that you love. </div>
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Sit down, listen to the children around you, have a conversation with your grandparent and hear what they have to say, be still in the chaos and appreciate how alive the world is around you. </div>
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In the blink of an eye, your life can ground you so quickly that it makes you physically ill, every minute you live without smiling and appreciative in this life, is a minute you won't get back.</div>
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Hold your babies when you're together.</div>
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Walk away when you want to scream, but run back for a hug and kiss when you're collected.</div>
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Watch them sleep with their eyes closed and their chest rising and falling.</div>
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Feel their warm skin and drown yourself in their giggles.</div>
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Remind them you love them, every single day.</div>
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Pray <strong>for</strong> them, <strong>with</strong> them and <strong>to</strong> them.</div>
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And as a friend, my prayer is that you will always support one another even during battles that you don't understand. That you will allow yourself to be selfless in your friends needs and love without judgment. </div>
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Above all, laugh, enjoy the company around you, cherish your blessings and know that in the end, you led a life with no regrets, you loved without holding back, you respected yourself and family enough to fight for it and you're grateful for all you have. </div>
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<br />Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0tag:blogger.com,1999:blog-6582560550294418738.post-63057934560885836542016-04-13T19:05:00.000-07:002016-04-13T19:19:57.242-07:00Upper and Lower Endoscopy, biopsies and 23rd round of anesthesia<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFuEWnlpzDhuBeviE_NdDuStmNNZgyKRTWir6LbOWcKp6ArHcVSK5TAiokQVBKs6UD-lnEqJNbRbxho2LHydmSjxpjsJtghSZywepQK0mQmSOMGEIQWfE7-PP27itpZWWDKpaUu22mvGXc/s1600/DSC00010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFuEWnlpzDhuBeviE_NdDuStmNNZgyKRTWir6LbOWcKp6ArHcVSK5TAiokQVBKs6UD-lnEqJNbRbxho2LHydmSjxpjsJtghSZywepQK0mQmSOMGEIQWfE7-PP27itpZWWDKpaUu22mvGXc/s640/DSC00010.JPG" width="480" /></a></div>
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Honestly, considering where we started and how far we've come, I cannot complain about an ounce on how Annabelle is doing on this trip. She's handled painful procedures like a pro, the hospital has been very keen on addressing any anxieties she has and allowing us to make a lot of decisions for her. All things considered, things have run pretty smooth.<br />
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(For the record, I LOVE this kinda blog update :) )<br />
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Since our OR time wasn't scheduled until 1:55p, we spent most the morning being lazy, painting, doing arts and crafts, watching movies (we watched Matilda, because I got to pick the movie this time hehe).<br />
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The doctors and GI team made their rounds at 9am and we joined them for Annabelle's briefing on her case. I love how they do this. All the doctors on the floor, research team, specialists, and our nurse stand in the hallway outside of our room with their computers and we join in a circle. Our nurse then briefs the team on why we are here and how Annabelle is doing. The main doctor explains to the team what our plans are for Annabelle while she's on the floor and during surgery. They ask if we have any follow up questions or concerns and then they wrap up our case.<br />
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(Here's a random internet picture of what this looks like)<br />
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It's all open, we are intimately part of every detail of Annabelle's care, just the way it should be. After were finished, we go back into our room and shut our door for them to move onto the next patient. </div>
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<span style="font-size: large;">The OR called for us</span> shortly after 1p and transportation rolled us to pre-op. Annabelle began to get scared for the first time, she was breathing terribly heavy and had silent tears falling from her eyes. </div>
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"What's wrong sweetly?"</div>
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"I'm scared mommy, I don't want surgery anymore. I just want to go to our hotel, please."</div>
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She has been so brave until this point. And she still was, but she was nervous. Our room was no longer decorated beautifully with a Disney movie on the TV, instead, we were now in a holding cell with lots of monitors, beeping machines and teams of doctors, anesthesia and research specialists talking to us and surrounding Annabelle's bed. She had every right to be intimidated. We both gave her our cell phones, she played games, took selfies and even snapped pictures of mommy and daddy lol (excuse us, we look like hell)<br />
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Finally, Dr. Putnam made his way to see us, this was a relief to Annabelle, she loves Dr. Putnam and was so happy to see him. We quickly discussed our game plan and he noted that we were next in line for the OR and he would see us soon. </div>
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We moved into the OR where about 15 people were standing around and waiting to begin. I feel like such a fish out of water when we go in here.. they're all staring and watching us silently as they work to organize their last things. I eye each and every one of them, trying to smile, but in my mind <b>screaming</b> "keep my baby safe. keep her alive. Take care of my baby. You. And you. And you. And you.." I can't help it, each and every one of them are accountable for my daughter from the time I am escorted out of that room. I don't know what their roles are in the OR, nor do I care, but my expectation is that they all keep her safe. each and every one of them. </div>
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The anesthesia team (initially) followed my request to repeat the same procedure as we did last time for keeping her comfortable and asleep. They administered Versed and within 20-30 seconds, she was drunk.. Just the way I like to see :) this relaxes her so she isn't as anxious when they put her under and she wakes easier without panic. Next they gave her Propofol which usually does the trick without needing the gas to knock her out. Anytime I see Propofol though, I have flashbacks to when we attempted to use it for an EEG and she fought it with every dosage until it was too dangerous to continue so the anesthesia team ended the test bc she wasn't responding appropriately. It was terrifying and I wish I never witnessed it, it's scarred me. She wasn't even 2 yet and was so, so sick ...<br />
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This time though, when they gave her propofol, I watched and her eyes bolted open in a panic just like they did three years ago and my heart stopped. I didn't want her to fight or be scared, I immediately crouched down next to her and told her we were going to take a nap together, and she laid her head back down. I told her I love her so much and sweet dreams, she gave a half smile and closed her eyes. That's when the anesthesiologist put the gas mask over her face and we were escorted out. </div>
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This video shows right after she had versed and when they administered Propofol, I cut it off when I noticed they were giving the Propofol and she was trying to sit up.. </div>
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We made our way to the waiting room and found our usual seats, right in front of the monitor that relays how Annabelle is progressing thru the OR. This was AKs first time being inside the OR when they put her under, we talked about it for a bit.. He didn't like what he saw, as a daddy, there are just a lot of parts of this medical process with Annabelle that he would prefer he never sees or knows about. The OR is intimidating, without a doubt, for parents as much as it is for the kids. I'm just grateful Annabelle has us both to balance the emotions of what she's going thru. I am much more medically aware and engaged, a fighting advocate for each and every decision and daddy is her hero that brings a bit of home to the hospital and makes her laugh and forget everything she's going thru. We wear two very different hats in how we provide her medical care and how we parent our kiddos, and I couldn't ask for a better co-pilot on this adventure.<br />
....enough of that sappy stuff..</div>
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About 45m later, we were called for a consultation, where they take you into this tiny room between the OR and waiting room and our nurse (Eosinophilic Esophaghitis specialist/ Putnams right hand man, err, lady) briefs you on what went on, updates her notes from us and we wait in silence until Putnam joins with pictures and an update on what he saw visually. She looks good from a visual standpoint, we need to wait for biopsies and he stressed that we need to have some conversations during our clinic visit on Thursday. We agreed, took our paperwork and went back to the waiting room where we wait until she's stable in the PACU and they call us to go see her. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzbZkPenbUnahIgJywzktVznxdX_xphDSvpGJQ6ONTXvgLuD-wNv8rAmaTLPUugEeBCE-0aFnQSTS-7Ri6yEO-2Gg8K6WaTD_MoEf01n9oxfJQ6FnC3lV77NlvKS-y4yYTDgvCTzLqdXwK/s1600/12936652_10100273503114519_2956702205229719844_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzbZkPenbUnahIgJywzktVznxdX_xphDSvpGJQ6ONTXvgLuD-wNv8rAmaTLPUugEeBCE-0aFnQSTS-7Ri6yEO-2Gg8K6WaTD_MoEf01n9oxfJQ6FnC3lV77NlvKS-y4yYTDgvCTzLqdXwK/s320/12936652_10100273503114519_2956702205229719844_n.jpg" width="240" /></a>.. .. .. Almost an hour later, I was covered in hives and wanted to vomit from nerves. She has never ever taken this long to wake up and them call us. Every worst case scenario was running thru my head and I just knew she was screaming hysterically in disoriented fear and I wasn't there (that's how she comes out of anesthesia 80% of the time). I demanded the rep at the front desk let me see her and/or speak to the nurse that's back there with her. I couldn't take it any longer. The nurse on the phone said to send us back, I bolted to the PACU, leaving AK in my dust. When I found her, she was still snoozing away, still had a breathing tube and on oxygen, she just didn't want to wake up yet. After about 5min she wiggled a bit so the nurse removed her tubes and set the oxygen to the side as we watched her for another 30min. She seemed to be slowly, very slowly, coming out of it.. But she was scaring the hell out of me. I couldn't touch her, hold her and I can hardly speak to her bc it's essential she wakes on her own and doesn't panic when her body can't wake as quickly as she wants to. We swallowed over our lack of patience and anxiety and watched our baby snooze... For what felt like a year! Finally, they called transportation and allowed her to finish coming out of anesthesia in our own room on the floor. I was relieved, at least if we're leaving PACU, that's a good sign.. </div>
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When we got back to our room, daddy picked Annabelle from her stretcher and carried her back to her bed where we made her comfortable again. This little bit of movement did wake her a little more and soon she was opening her eyes for us. We both exhaled, loudly and smiled at one another. Whew, she's back! </div>
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I've mentioned it before, but anesthesia is one of my biggest fears, for myself, for my husband, for my babies. It isn't often people are put under, but in Annabelle's case, it is often. This was #23, and although I wish it wasn't in the back of my mind, I always think and say "how many times will we be lucky for everything to run smoothly? This may be the last time I see my baby awake and smiling at me, this may be the last time I hear her sweet little voice." Anesthesia is dangerous, there's no doubt about it and all our doctors remind us. We have to get to a point where she isn't going under all the time bc eventually there WILL be consequences to the repeated bouts of anesthesia.. I just wish we were already there. :( </div>
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We were discharged around 530-6pm, just in time to play in downtown Cincinnati traffic during a rainstorm. Annabelle was too tired to notice how long we were in the car.. She was still so groggy, which was probably a good thing. We arrived at Great Wolf Lodge around 7p and revealed her big surprise :) she was pleased, but couldn't grasp the amount of fun these few days would bring. <a href="http://superbabybelle.blogspot.com/2013/07/a-rough-weekend.html" target="_blank">The last time we bright Annabelle to Great Wolf</a>, she was so sick and weak, we thought we were losing her.. Hospice was called a month later. She doesn't remember that trip at all, she never really got in the water, she just cried occasionally and slept 90% of the time. Here are some pics from that trip:<br />
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Mady remembers the trip though and remembers how much fun it was.. When she finds out where we took Annabelle, she's going to be FURIOUS! Lol</div>
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We didn't do anything fun open arrival, we had dinner where Annabelle couldn't eat much and then sat for story time, but she asked to leave within 5 min of the story beginning because she wanted to go to bed. </div>
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Tuesday she did play for a bit, but she is still incredibly weak. I can't gauge whether it's all because she couldn't eat for two days and then underwent another surgery or if she's tired because of all the running and swimming thru the water park. Nonetheless, she could only play for about an hour and a half and then couldn't walk or run much any longer and needed rest and some sleep. Her cough is getting pretty out of hand too so we're keeping a close eye on that.<br />
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No appointments Tuesday. Wednesday we report at a satellite location for a sleep study.. and based on how much we are wearing Annabelle out playing, I don't foresee any issues sleeping on the only night she DOESN'T need to sleep like a log. lol </div>
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Annabellehttp://www.blogger.com/profile/17971624259400187056noreply@blogger.com0