Thursday, September 18, 2014

Scope #6

Tucking two little girls in separate beds the night before a procedure is always one of the most grim for me.. I hate it, and I hate that my mind thinks the way it does. I snuggled Madelynne in bed as AK was tucking Annabelle into hers. I tucked hair behind her ear as I peered down into the most beautiful dark brown eyes and said, "Tomorrow morning is going to be a little crazy sweetheart. Im going to wake you up really early and once you're dressed, you're going to go to the neighbors house for breakfast and she'll get you on the bus, okay?" Mady knew exactly what this meant... "Why am I going there tomorrow? ........... Is Annabelle going to the hospital? :( " I refuse to ever lie to my children and I told her yes, her sissy has another procedure tomorrow and mommy and daddy have to be at the hospital really early to get started.. Mady looked towards the window.. "Why don't you go give your sissy another kiss before bed and tell her one more time that you love her." I said.
Madelynne jumped up and raced to her sister's room, planted a kiss and I heard both of them giggle as she ran back to her own bed. "Sweet dreams pretty girl - I'll see you in the morning"
Being a parent to two different children with very different needs, different maturity levels and exposures to life - is so difficult. Times like these are what challenge those moments.

Annabelle fell asleep easily. AK packed lunch boxes and gathered things for Mady while I pulled everything together for the hospital and the next morning so we would be prepared. We both crawled in the bed late but no matter how hard I tried, I couldn't sleep. The anxiety is torture. At 3:45am Mady came to our room crying due to a nightmare (apparently a kitty cat with super sharp claws trying to scratch you is quite the fear of a 5yo in dreamland), I opened the blankets and she crawled into our bed. 4:05am Annabelle fell out of her bed and started crying - AK ran to her room to help her back into bed, but of course since she was awake, she immediately began to ask for a cup to drink.. she can't have anything to drink, she's NPO after midnight. Fortunately, she was more tired than thirsty and quickly fell back asleep within 15 minutes. The morning was every bit of the chaos we expected it to be. Mady got up easily without a fight, but I did have to wake Annabelle up. I found a comfy set of clothes for her to wear and tried my hardest to dress her quietly in her dark room as to not wake her too much. She immediately opened her eyes and watched me. She didn't say anything, just went thru the motions - right arm in her sleeve, left arm in her sleeve.... I walked to her closet to find matching shoes and the most heartbroken little voice behind me whispers, "Mommy..... where are we going?" Now to be fair, I am certain she was just disoriented and barely awake, curious as to why I was dressing her while it was still dark outside. But inside my mommy-heart, I broke at that instant.

You see, it's getting SO much harder as she's getting older. I used to just dress her and move out the door and trick her into the arms of an anesthesiologist as I played peek-a-boo, but she understands now. She understands far more than an almost-3-year-old should. I cannot lie or trick her. I sugar-coat as much as I can without being dishonest about whats going to happen. She's so smart, gosh she's wise.

"Annabelle sweety, we have to go to the doctors this morning okay? We're going to find some comfy shoes to wear and take your blanket because it's cold outside!" - instant tears begin to stream down her face. "No mommy! I don't want to go to the doctor! They give me shots and they hurt!" I pipped up and said they wouldn't give her a shot today (she's sedated when they do her IV), but they do need to look to see how her boo-boo's are looking and if they're getting better. She wasn't happy at all. We moved quickly into distraction-mode. Fortunately, the morning was rushed so we didn't have much time to focus on the conversation about the hospital, we were too busy finding a jacket on this cool September morning and getting out the door!



We arrived at the hospital and Annabelle clung tightly to my shoulder. The threshold doors of a hospital are the worst. I don't know if it's the smell, the atmosphere or just all of the above but crossing thru the doors of a hospital are what turns the page in Annabelle's book, and it's never a fun chapter to read :(

Registration was simple as pie. They had all our information as usual so we checked in long enough to get our ID bracelets and wait to be called back. Annabelle was doing well. She stayed occupied by playing with daddy's watch, looking out the windows and playing games on our phones. Finally it was time to head back and my stomach sank. Annabelle didn't seem phased, but I was nauseated.

If the threshold doors of the hospital don't set Annabelle into a panic, the next guaranteed measure of breaking the kids heart is asking her to take off her clothes and put on the dreaded hospital gown. We avoid the gown at all costs.. I usually try to dress her appropriately that they can do whatever procedures they need and not have to undress her, but this time we weren't as lucky. The moment I pulled her shirt from over her head, she was stripped of control for how the rest of the day would unfold, and she knew it. She cried and begged to go home... we immediately doubled the distractions and entertainment and soon she was calmed down. My heart raced faster.

The anesthesiologist came to visit us. We discussed a lot of what our game plan would be for the day. He had multiple concerns over her cough, as did I before a procedure such as this, but I assured him that we've seen our other doctors and we feel strongly it's a reflux induced cough/choking and it shouldn't interfere with the anesthesia. I expressed my concerns over what size tubing they'll plan to use when intubating her and we all agreed to repeat the same strategies we did in the spring and hopefully that works.

http://youtu.be/NQvTzZBgBbo

The waiting in pre-op is painful. You count the minutes even though you don't know if she'll be taken back in 45 seconds or 45 minutes. Your heart is torn between "hurry up and take her so we can get it over with and we don't have to continue this arduous waiting game and distracting the nervous toddler" at the same time you're praying with everything "Please don't take her! These are my last moments of having my little girl before she is put to sleep by heavy drugs and at the mercy of a doctors skills to keep her safe in an OR, these are my last minutes before she wakes in pain and looks at me with those confused heartbroken eyes". Pre-op is the very worst.


Before we knew it, our doctor was visiting us and checking on Annabelle. We discussed again what the plan was for the day and I expressed what I was most concerned about and wanted to know while she performed the scope. Not much longer after she left, the team came back to see Annabelle and started putting on rubber gloves. I knew what that meant. I gave my little girl kisses with the fakest painted on smile while AK blew up a rubber glove balloon to take to the OR with her (she loves those things.. and if you haven't ever had to tie a rubber glove balloon, you can't quite understand the painful fingers it causes! lol). Soon it was time. Without looking back the team began singing and dancing with my little girl riding on the bed down the hall, waving to everyone with a prom-queen, cupped hand wave and saying "Goodbye! Goodbye". I could hear her little voice as I stood behind them taking her away and we watched silently.. smiling at how strong and brave she just was and nervous at how scared she will likely be the moment she realizes mommy and daddy are not right behind her as she thought. I turned away the moment I could no longer hear or see my baby girl, gathered our things and quickly rushed out the door to the waiting room where I exhaled harder than I believed possible. How long was I holding my breath?! Gracious!


AK and I both needed to eat breakfast, and we both needed a distraction. We went downstairs for a bagel and the worst tasting coffee made. We inhaled our food and went back upstairs. We weren't sitting long at all before I recognized our nurse and saw her announce "Bishop?". When that moment comes, you wouldn't believe how fast a parent can gather their things and hurry down a hallway! I know that if we're being called, that means my baby is fine, but she's awake. And if she's awake, she is upset and needs me - I wish the nurse would RUN and I follow, but of course that isn't kosher. As we were walking together to the back, she smiled and said to me, "Annabelle did great while under, the procedure went well but she's quite fiesty and mad now!" She said it smiling, I laughed back and agreed, "Yes, that's my baby girl.." inside I broke .... I need to see her NOW! HURRY WOMAN!!!

The moment I could hear her cries from down the hall, I no longer needed the guidance of our nurse, I passed her and made my way to my baby's bedside. I dropped the rails to her bed and threw her blanket off her lap to evaluate just where all her tubes and wires were located so I could best plan how to pick her up. Annabelle was screaming relentlessly, absolutely screaming but so disoriented. She wasn't fighting too bad, fortunately, but she was so confused and loopy. She couldn't hold her head up or safely control her limbs. The nurse helped me pick Annabelle up as I crawled in the bed with her as I always do, and slowly laid my baby on my chest. She likes to lay her head to my chest and I humm and whisper to her our secret little sayings. She needs to hear my quiet soft voice.. somehow it soothes her and slowly washes all the fogginess of the hospital and drugs away. She gradually comes back to me.. There is absolutely no better feeling than when that bridge happens. At the same time, around the moment she realizes that mommy and daddy are there, that she is safe and everything is all done - that's also when she realizes just how much pain she is in and recognizes the IV in her hand and that were not leaving immediately. She panics all over and the screaming begins again "Mommy go home! I go home! Take this OFF!!!!!(IV)" She had a couple sips of juice between bouts of screaming and relaxing, her vitals were looking good and all I could think about was calming her down.

That's when I heard the heels of our doctor. She always wears heels and their sound is indistinguishable. I heard her mumble "Im just going to follow the sound of the cries.." I laughed and announced from behind our curtain "were in here, you can't miss us!" She peeked her head around the curtain and gave a gentle smile at Annabelle, and then a gentle smile at the two of us. "Well.. .. .. for the good news (hooray, there's actually good news!), the visual indicators of the Eosinophilic Esophaghitis look so much better. The prednisone and elimination diet appears to be working. Then on the other hand, for the bad news, the bottom of her esophagus is red and raw. Her nissen is in tact but it's very loose." The omeprazole (compounded prilosec) we've been giving twice a day just isn't able to control how badly the acid in her stomach is eroding her esophagus. We decided to immediately DOUBLE her omeprazole and wait for the biopsy results next week to determine our next game plan. If we need to repair the Nissen, that will require another MAJOR surgery and they'll have to open her back up again to go in and make those repairs. Fortunately, it didn't appear that Annabelle had another hiatal hernia to cause concern, so we are very much hopeful that the higher dose of acid blockers will help control the damage being done to her esophagus and we can avoid another surgery for a bit longer.



So now we wait. Next week we will receive the biopsy results from Pathology and determine what to do with Annabelle's diet and medications then. In the meantime, we are working hard with our doctors to seek a diagnosis for Annabelle's, we've discovered an incredible hospital that specifically specializes in diagnosising children with histories and symptoms such as hers. We cannot wait to get answers for our baby girl. It's going to requite trips out of the state, but our prayers are in the hopes what we learn will be completely worth the cost, time, pain and frustrations. Annabelle deserves answers and our family needs the guidance and help for how to provide the very best quality of life for this incredible little girl.

October 4th, starting at 2pm - mark your calendars. Annabelle has so many incredible and loving people out there that pray and support her... we want to do something to show our love for you to be able to visit and high-five Annabelle too. Saturday, October 4th, my cousin is hosting everyone at his property for an afternoon of fun, food, music and games. There will be a corn-hole tournament beginning at 2pm and 100% of the proceeds go towards Annabelle and her medical expenses, the upcoming hospitalization out of state, prescriptions, and who knows, maybe even a new super cute tubey-backpack if begs and bats those eyelashes just right ;) Annabelle will be in attendance (of course only if she is feeling well), and would absolutely love to give hugs and high-fives to every single one of you for all that you've done for our family over the years in supporting this little girl. We will have games setup, plenty BBQ and sides, a live band, bon fire, line-dancing(!) and simply the best group of friends, family and perfect strangers we love just as family, to share a drink and laughs with. Please, please feel free to join and bring anyone you wish. I promise it'll be a good time for everyone and a great kick-off into the Fall :)

Email me if you want directions and address!


As always, thank you all so very much for your love and prayers for Annabelle. She's quite sore, has very little appetite (which we would expect) but otherwise back to her normal honorary self. The only difference from this procedure from all the ones we've done in the past is that she has lots and lots of air in her tummy. She's spent most her time laying in our bed. As soon as you hook her gtube extention to an open 60cc syringe, the air just explodes from being released off her stomach. I thought for certain it would only happen right after the procedure, but she's still full of air. Hopefully once this settles down, she will be able to find more comfort soon. I promise to keep you all updated once we hear from the biopsy results. And hopefully we will have a date to begin our travels for help very soon!!!








Wednesday, September 10, 2014

365 Days of being a Tubie!

A year ago today, we began the life of a tubey. I remember the day like it was yesterday, I remember the night before like it was yesterday. I didn't sleep. All I could think about was that the next time I closed my eyes, my baby would have a tube taped across her face. Some of my fears were irrational, others seem miniscule now. We procrastinated all morning. I needed to pack our bags, but Annabelle wanted to play dress-up, so we put on tiaras. The clock was ticking away and I refused to take a shower, so finally I pulled Annabelle into the shower with me so I could hold her close. I couldn't look away from her. I fought tears the entire day. Every time I would see her smile and her precious face, I died inside.

A huge part of my mommy soul died a year ago today. I spent so much invisible energy fighting the medical world to keep my daughter off a feeding tube. Nearly every hospitalization was a battle to keep that tube away from her face and tummy. I pleaded for help but conversations constantly circled back around to her nutrition. Just because she was diagnosed with Eosinophilic Esophaghitis, to me, didn't mean she MUST be placed on a feeding tube. She was stronger than that - she drank the elemental formula! She wasn't like other kids, she was so strong! Finally, I began to see thru the fog and recognize just how malnourished my daughter was becoming. Just because she was eating the formula didn't necessarily mean she was being nourished - I didn't understand that.

The drive to the King's Daughter's Hospital in Norfolk, VA was heart-wrenching. With every mile, I felt my heart shattering away. The moment we arrive back at home, our lives will be so different. It's like when you leave your house to have a baby.. you look around at all the walls and roads and daydream about how different your life will be when you are back again. That's exactly how I felt driving to Norfolk, only with less anticipation for a brighter future - I drove to Norfolk to meet the finish line of a battle I've lost, not won.






I was wrong in so many ways. I may have lost a battle I fought for my daughter, but I won my daughter back as a result. We have conquered and overcome so many battles since placing the NG tube, in many ways becoming a tubey has been far more difficult than I could have ever imagined, but there are more hidden blessings that I ever dreamed.

  • Annabelle is finally nourished without any effort of her own
  • We can sneak medications without ever waking her up at night/naps
  • We can hydrate her when she needs fluids, without forcing her to consume them
  • I am certain Annabelle has gotten adequate nutrition because we can monitor every drop
  • She has energy to run and play when she's well
  • Annabelle immediately began to grow, walk, laugh and LIVE when we placed the tube
Of all the fears I had about becoming a tubey, some of the most life-changing we've experienced, I never considered were on our horizon:
  • We've lost friends because they don't understand our daughter
  • We've lost friends and family because of our life and priorities. they don't understand
  • Finding childcare or a babysitter is impossible. people don't understand
  • We are judged in public constantly for "having our priorities all wrong when that baby is clearly SO sick - she shouldn't be shopping, she should be at home!". people don't understand
  • Annabelle blames her 'tubey' for the reason she cannot do things like every other child. she doesn't understand
Then on the other hand, many of the initial fears have remained.. our biggest fear and fight was that if we placed Annabelle on a feeding tube, that she will never come off the tube. A year later, we've lost even more foods, our nutritional plan is still not solid and I've been told my numerous GI's that it's likely Annabelle will never come off of a feeding tube. Whether or not she will always be nutritionally dependent on the tube is one factor, the damage within her GI system and Nissen is another contributor for mandating the tube will remain. This reality was the driving factor behind our fight against the feeding tube, and we absolutely despise the same reality, a year later.

Our home has become flooded with feeding tube supplies.
We have a huge walk-in closet dedicated to feeding tube supplies alone. Every bathroom has a basket of supplies (syringes, venting tubes, feeding bags, blending bottles, formula, extensions and tape). Our kitchen is stocked with a secondary tubey storage. Both our vehicles have a bag of feeding tube supply and a G-tube emergency replacement kit. My purse ALWAYS contains an emergency tube replacement kit and Annabelle is never, ever further than 5 minutes from one. Both our families we frequent have tube feeding supply, formula and extension sets.

We've learned a lot. We have learned SO much, it's incredible. Throughout our journey with Annabelle and our mission to find our diagnosis, I have to say, navigating the feeding tube journey has been the largest learning curve for AK and I. Our hands have performed more procedures on our daughter than we ever care to admit.... and they still do. We change NG tubes, we change g-tubes, we hold her down to burn granulation tissue off her stomach, we apply steroid creams to infections. Our cars will forever carry the specific scent of stomach bile from all the times a tube has opened and drained Annabelle's entire stomach all over our car and herself. Nights are long; just this week alone, 3 out of the last 7 days we have spent the middle of the nights changing bed sheets, baths and panic because once again, the feeding tube has fed Annabelle's mattress and not Annabelle. Our life is chaotic. This is in no way a sympathy post, it's simply a reflection of our life during the last year. It's every bit of why I fought so hard against a feeding tube and it's our reality. Annabelle has undergone more pain, strength, accomplishments, hurdles and milestones than I ever dreamed she would during these last 365 days. I still hate our feeding tube, more than I did a year ago. But I am so grateful for what it does for our daughter. Annabelle is incredible. My God she's so amazing!! She smiles so big and floods the world with the life within her. She's being nourished, not perfectly, but she's alive and happy.




One year down. Not looking ahead, but reflecting back, 365 days are behind us, and wow, what a whirlwind they've been!



Sunday, September 7, 2014

Frustrating Sunday Plea for Help

How many drugs can a toddler be on and continue to decline? She isn't moving rapidly downhill, and for every smile and giggle we are blessed.. But Annabelle is certainly not making progress in the last several weeks. She's on heavy prednisone and antibiotics and only coughing and hacking worse. Her nose constantly runs, she's wheezy and congested. None of these are as uncomfortable for her though as the chronic constipation. I'm giving her Miralax twice a day with the max dose ordered by our doctor.. And every day , I have to rush to my trembling child yelling holding her little hiney. Her poor butt bleeds.. Enemas and more of an enemy to Annabelle than helpful. I wish they weren't but she just fights so terribly and spends hours SCREAMING(!!!) afterwards. It's traumatic enough that I'm beginning to loose focus on which is worse. We need help for our doctor, as usual.. But we just don't have quite the right doctors.. As usual :(

Her birthday is right around the corner! September 20th. Planning her party is beginning to tug on my heart strings so heavy, I am having a hard time finding the motivation to even plan the party. How do i make my child a birthday cake when she can't have a cake? Can I serve food or will she had just lost all her foods from the scope a week before? Planning is hard. Being a mommy and wanting only the biggest and best for your strong little girl, it's enough to drive you into a hole during times like these! I've said it before and again , holidays suck!

We're still on schedule for the OR, September 16th - the closer we get to the date, the more I don't want it. I just don't see the purpose any longer. News for Annabelle is always discouraging and if we find she's in bad shape still and we still having gained control of our last relapse , than we will begin to face ever harder decisions that still aren't helpful! We need help. Annabelle NEEDS a doctor and a miracle. She needs her true diagnosis and a hospital to take us and fight until we get everything we need. All were asking for is a diagnosis and treatment plan, that's all our family wants and could ever wish for. Please, this year we need that miracle and prayer answered. How about this month? Is that too much to ask for? Help for your baby that's suffering? That's all we ask... Answers and help for this strong little girl. Someone hear our prayers, please!! 

Saturday, August 30, 2014

When it rains, it pours


The last few weeks have been a whirlwind for Annabelle and our family. As always, when we are having a tough time or get bad news, it takes me a while to absorb everything before I can collect words to share them to the world. Thank you sincerely for being patient and keeping Annabelle in your prayers, even without prompt updates, it means the world to us.

During the past few weeks, Annabelle's pain and appetite has gotten increasingly worse. We were scheduled to meet with our doctor and get clearance for an upper endoscopy and biopsy's, while there our doctor was fortunate/unfortunate enough to hear how miserable Annabelle felt and her gross coughing and choking. She listened for quite a while and reassured us that the coughing was not from any respiratory or her lungs, it has to be GI related. This isn't surprising to any of us since Annabelle has been on straight prednisone, twice a day for over 5 months now. Long term steroid use poses many complications,one of which is steroid induced reflux, which is likely what were seeing right now. Annabelle does take a compounded acid blocker twice x day to alleviate reflux, in addition to having a nissen (stomach / esophagus tied snug to prevent reflux from emerging from her stomach to throat). Still, the coughing has been lingering for over 4 weeks and is quite persistent. She's uncomfortable, exhausted and overall just frustrated at the constant battle to get rest without barking all night. Hopefully our next scope will show us something.


After our appointment, we performed a few labs. We have been so fortunate to not have had to draw lab work for a couple months now! Unbelievable!! Entering the lab to have her blood drawn however, was not a distant memory. Annabelle knew immediately what that small white room meant and she melted down. I sat in the chair and the lab tech did an incredible job drawing the labs. She got Annabelle on the first stick (!!!!) but it still didn't mean there weren't a flood of tears and PLEADING to go home, "mommy stop! please! go home, mommy, please!" :( It was over before we knew it and I left Annabelle with our nurse at the doctors office to head home while I flew to work myself.


That evening on the way home, I got a call from the doctors office. The labwork they performed wasn't complete. They accidentally used the wrong tubes when collecting some of her tests and needed us to return to have the labs repeated. My heart sank. There isn't much worse than having to hold your sweet baby down for needles, but to unnecessarily have to do it all over again because of someone's mistake, that really bites. I know the sweet lab tech felt equally horrible - I'm certain she didn't want to stick a baby anymore than I didn't want my baby in pain again, but the situation itself was frustrating. While the labs were important, I knew there wasn't any way I would be able to return the next day for the labs, and I didn't want Annabelle stuck in the same place just a day later - I know that hurts. I agreed to bring her back, but it wouldn't be until the following week. I felt terrible for Annabelle and looked at her pitiful eyes in the rear-view mirror, 'Belle, do you want your toes painted pretty?' She piped up quickly and said 'Yes!!! Yes please!'. She's been pointing at her chipped nail polish for days saying her toes have boo-boo's and I haven
't gotten around to painting them. AK was out with Mady for the evening so I decided Belle and I would take our own girls night and have our nails painted. She picked the color for both of us..

A few evenings later, the labwork we were able to get, began to come in... to our surprise (or no surprise at all, really), multiple tests came back quite alarming. The labs kept coming in over the next day and our doctor and I spoke numerous times about what these labs all mean. For one, her Eosinophil count was as high, if not higher now than it's ever been. Which is beyond frustrating considering we've had this kid on prednisone, little food and kept her in a bubble for 5 months, only to find out we haven't made any progress in regaining control of this disease at all. I think deep down I knew Annabelle wasn't well and we haven't been very successful in bringing the last EoE relapse into remission - but I couldn't have imagined even her labwork would look this discouraging.

Other tests came back alarming high for multiple auto-immune indicators, not associated with Eosinophilic Esophaghitis. Our doctor then mentioned a plausible cause: Lupus. My mind remained confused as she talked me thru it and we began reading and researching together. Lupus is a connective tissue disease and is often times overlooked/undiagnosed because of Eosinophilic Esophaghitis! I continued my research and heavily believe this has the potential to be our root, global diagnosis. With the remaining of the labs filtering in day by day, each and every one of them continued to validate Lupus as a likely explanation. http://emedicine.medscape.com/article/1008066-overview
We are working ferociously to move to a specialty hospital that has a team specifically  for children with multiple auto immune symptoms and diagnosis but are living with little quality of life due to the absence of their global-root diagnosis. That's where we need to be. And we are doing everything we possibly can to get there!

This week, while school shopping for Annabelle's sissy, we decided to grab dinner before going home. Annabelle had been in a great mood all evening. The time was late, it was around 730p and suddenly, at the dinner table in a restaurant, everything changed.
Annabelle began saying her ear hurts, she then began crying and throwing a fit. Within minutes she wanted to lay down and then minutes later crying again. An ear infection is something every parent has dealt with 239016036 times and can pretty much diagnose immediately without the use of any doctor tools or payment of a co-pay. But something about the escalation of how quickly Annabelle went from smiling and playing, to laying in the dinner booth and bawling crying, made my mind race. I got up from the table and kissed my family goodbye before dinner was finished.. I curled Annabelle in my arms and power-walked her to the car. We live just minutes from a KidMed and a hospital. I decided we would visit the KidMed to at least be in a safe place if something took a turn for the worse. I drove, in complete silence and gently singing to Annabelle between promises "We will be there soon sweety! We're almost there! I'm so sorry your ear hurts, just another few minutes!" Annabelle screamed. She screamed and screamed and cried her eyes out. We got to KidMed where I carried a limp and moaning little girl thru the doors and was greeted with more tedious paperwork and insurance questions than I see at DMV! I was heartbroken for my daughter as she waited in pain with tears streaming down her face while I filled out paperwork... bad policy there kidmed - if a child is in pain, let's address that first and paperwork later - or at least allow us to go to our room and begin the doctor process while I fill out the paperwork!

 Once we were finally in our room, the questions began. "Alright, so how is ms. annabelle, does she have any allergies, unusual medical history or any past surgeries?" - ughhhhhhhhhhhhh, where is my binder when I need it?! I have all those questions answered on pre-printed copies that I can just hand the nurse when we see a new doctor/specialist/hospital. I smiled politely, as I always do and asked sincerely "her medical history is miles long, it would be easiest if I tell you her drug allergies and only tell you what foods she CAN eat. Here are her surgeries and confirmed diagnosis.. I know you're going to want details on all this, but my daughter is in pain - can we just start with that until the doctor comes in and we can begin some pain meds and I promise I'll answer the rest of the questions again when I repeat all of this for the doctor." She smiled and thanked me for my honesty and said "thats a great plan - lets get this down in 30 seconds and I'll grab our doctor mom". whew.




She definitely had an ear infection - but that became the least of our concerns when Annabelle began shivering and instantly stopped crying while staring at the wall. Her temperature just moments before was 97.3, she was now drenched in sweat and silent. The doctor felt her all over and asked if this was common. Annabelle hasn't been in acute pain like this for quite some time, nor has she ever had an ear infection - but when she is in pain or her immune system is required to fight something, any and all symptoms and her little body's reaction is in the air as to what it's going to do. The only thing we can do to calm it is to relieve the pain and calm whatever is challenging her immune system. Without a doubt it isn't an immediate fix, but it will at least usually calm the insane rapid things her body is and will continue to do until she's out of pain. I asked for Motrin, dye-free and they didn't have any. The doctor rushed the nurse to end the questionnaire and she handed me my paperwork - the antibiotic was already called in to our pharmacy but I needed to get home to get our safe pain reliever. We live only a few miles away so I rushed to leave.

The moment we pulled out of the parking lot, Annabelle began crying and pleading to make the boo-boo go away. She would stop between cries and go silent.. my heart stopped every time. Finally, about a mile or so from the house, she let out the worst pain scream I've heard in a long time. I have no idea what caused her so much pain to scream the way she did but it didn't stop. She began retching and vomiting, between every moment she could breathe from vomiting, she would scream to the top of her lungs. I couldn't get in our driveway fast enough. AK met me in the garage when we pulled up and I yelled for him to get her extension and a syringe FAST! She couldn't stop retching and I just knew it was her nissen that was tearing or causing her the pain. The pain screams correlated when her body would begin to heave to attempt to vomit. I carried her into the house where Mady was somehow still awake and scared to death when she saw her sissy in the condition she was... We hooked her extension and a 60cc syringe to her gtube and it immediately begin to relieve of pressure and pouring gastric juices out of her stomach in a violent matter. Soon, she was calmed again. Sitting on my kitchen counter covered in tears, saliva, stomach bile and the most pale grey face I've ever seen. I flushed her tube and gave her Motrin, carried her upstairs to wipe her down and put some jammies on. (a bath during times when her temperature is fluctuating, is the worst thing to do ever. Her body cannot regulate it being warm from the bath water to cold when she gets out - that's playing with fire. So during times like this, we just wipe down with some warmed soapy wash clothes and try to look past the smell of stomach bile until a bath is safe, ugh).

Annabelle laid in my bed with me while AK went to the pharmacy to pickup the prescription. She was silent and so still. Her temperature was moving rapidly, up and down. A couple minutes laying down on her side, facing the wall away from me, she began having tremors. They weren't nearly as violent as the seizures/tremors she had last year, but they were present and equally as scary. It stopped and Annabelle exhaled as if it just took every bit of strength out of her. She wouldn't talk or cry, she wouldn't hold my hand - she just stared at the wall with a terrifying blank stare. Then it happened again, and once again. I watched the clock and my heart raced - suddenly 'I' was scared and didn't want to be home with her alone. I watched the minutes tick by impatiently and finally he was home. With the meds and wore an equally worried frown when he saw Annabelle. Both our minds were racing I know, but we remained completely silent. She fell asleep and we exhaled. Her temperatures calmed down and the tremors stopped. Around 330am she woke in extreme pain again but it was short lived once we were able to get her more medicine. Her feeds weren't run at night because I was so worried she would aspirate and more importantly, she would try vomiting and not be able to retain the pain meds that she desperately needed.

The next day, our nurse spoiled Annabelle rotten, as she does most days :) She's a god-send to our family. I cannot take anymore time off from work but I knew we needed to get the rest of our labs done. I asked our nurse if she felt comfortable taking Annabelle alone without me. Of course that wasn't a problem for a nurse, but it absolutely crushed my mama heart. Annabelle has never had any labs, tests or procedures performed without me there. Im certain this is probably more about me than Annabelle so I decided it would reasonable to miss this round of labs and have our nurse do them so I wouldn't miss work. As soon as they were over, I called our nurse and asked how it went - with a low tone she said, "She cried and screamed for you the entire time Ashley. She just kept telling me that she only wanted her mommy.. she didn't do so good, but we did get all the bloodwork we needed and she's resting comfortably now." My heart was crushed. The rest of the day was difficult and I found myself buried at my desk with tears pouring in my lap. The mommy pain to know you need to be with your baby but need to be at work is the absolute worst pull of any feeling in this world. Absolutely no decision is right and everyone loses. These are the times when being a special needs parent can / will and DOES break you. I just hope this spiral is short lived and I can get back to my typical 'fake-the-smile' self soon.. but right now, my heart is shattered.

Annabelle still has very, very little appetite. Her fevers are completely gone and the pain is over of course. The coughing hasn't gotten any better, but our labwork is all back and we have everything we need to move forward, cleared for surgery. We are scheduled for September 16th at 7am. Four days before Annabelle's birthday :( Happy 3rd Birthday kiddo!





Monday, August 18, 2014

Belle visits our Capitol!

Sight-seeing, new adventures, laughter and smiles, that's what family vacations are supposed to be made of.

62884825827 stuffed bags, ruined nap schedules, soiled laundry and expensive restaurant meals, that's what a real family vacation is made of.

Then add the curve ball of an OCD parent in a city of germs carrying a child with an auto-immune disease, tube feedings, potty-training, medical supply, equipment and toddler-roid-rage, that's called The Bishop's in DC! 





The girls were beyond excited to take our overnight trip to DC. An anonymous angel donated our family a Marriott stay for whenever we choose to use, we decided our family needed to get away before things get crazy with Annabelle. I can foresee things getting so shaky, I don't like many of the things I am seeing going on with Annabelle right now and my gut is telling me to prepare quickly. AK and I know what life is like for all in our little family when Annabelle is going downhill, so we wanted to proactively do something enjoyable - mostly for Mady before she begins Kindergarten in a few short weeks. So we planned a spontaneous trip to our capitol! The zoo, museums and train ride will be fun, right?
Kinda.


Annabelle was happy when she woke that morning. We packed our bags and she was sure to pack some of her favorite things in her own bag like her sissy. We boarded the train and before we knew it, we were moving along between train stations. AK and I were giddy with excitement for the both of them, the girls loved sitting in their own seats beside one another.

An hour into the train ride, and everything turned around. Annabelle began to get extremely clingy, she wanted to be held, but then wanted down, and then wanted to lay on her belly - side - back - belly, etc. She began begging to go home. I told her we were going on vacation and she cried, she begged repeatedly to go home... see that's the thing with these amazingly strong kids - they adore an adventure, but they tightly hold onto their security of their comfort place. Annabelle's is her home. If she's uncomfortable or nervous, she wants to go home, and most often she requests to go back home to lay in mommy's bed. She wants to snuggle tight over my shoulder into my neck and just lay still in my bed. It's her safe place, and I respect that. Riding on a train towards Washington, DC however, made things quite frustrating for Belle when she realized we weren't headed home. My heart began to sink.


The Zoo was fun, but not convenient for a special needs child as I hoped. Most the animals or sights were behind a glass, or against a window that you needed to be near to see anything. This involved unbuckling Belle, unhooking the feed tubing from it's connections, loosening tubing from her backpack and putting it on my own back, picking up belle as limp as she was, carrying her bag and ensuring i wasnt going to snag tubing, making sure her face mask was still on and she not touching anything... then surrendering the stroller bc it won't fit around the billion people, then fighting towards the window where the animal should be... only to find "Ooh, ok that's it! The monkey is going back inside to eat lunch now, let's see another exhibit kids!" ... thats basically how our morning went, along with a cranky 5yo that moves as fast as an energetic 5yo does but constantly being told "Mady, you need to wait for your sissy hunny.. i need to hook her back up.. your sissy needs to go potty.. Annabelle is choking Mady, I need to help her". Before noon - I looked at AK with a worried face and said "I think we messed up.. maybe we shouldn't have tried this". Then Annabelle asked to go home, again. My heart sank deeper.

We went directly back to our hotel and as a family, we all took a long afternoon nap in the dark quiet. Annabelle snuggled over my shoulder with her soft breaths tickling my neck, Mady cuddled up with daddy on the other bed and soon, we were all snoozing.

The entire trip wasn't bad. The girls absolutely enjoyed themselves and got to see many important monuments and things that we only discuss in conversation. Annabelle's favorite thing, hands down, was the Washington Monument. I have no idea why, but she was mesmerized by it. She couldn't stop looking at how tall it was and asked if it was a tower, she also wanted to know if 'Punzle' lived there (Repunzle).
When we showed the girls the White House, Annabelle was quite disappointed to learn it wasn't a GINGERBREAD House. I have no idea what gave her that thought, but she was certain we were going to see a Gingerbread House and not the President's house. Mady pipped up with an insane amount of excitement when we showed her the White House, I asked if she liked that and she responded, "Oh, absolutely mom! My very favorite president lives there, do you think he's in there right now? President, George Washington is so cool, I hope we can meet him later today"  :)




The weekend was eventful. I ended up carrying Annabelle most the entire time while AK pushed a half-empty stroller around our 100mi of DC walking we did. Why she only wants me to carry her, I will never know. I secretly think she's just trying to break me down ;) after our days of me carrying her, she only wanted to sleep in the bed with daddy - and at that point I had to tell her just how unbalanced this love-spoiled rotten-picking favorites thing is she has going on lol. She is a daddy's girl, thru and thru!

The sight-seeing was great and the weather couldn't have been any better for our trip. Madelynne had a wonderful time and I am so happy we were able to deliver that for her. Annabelle did enjoy herself, but she couldn't wait to get home. She laughed and smiled when we showed her another big monument, but before we could catch our breaths, she asked to go home... again. I know she couldn't have waited much longer so we decided to catch an earlier train home and soon we were all back in our happy place, our own bathtub, jammies and bed. It was a great escape from Richmond, VA and a perfect break before life takes off on the fast lane.

Thursday, August 14, 2014

After speaking with our GI, she's agreed we need to head back to the O.R. and see what's going on. We need to scope and biopsy more things and gain an updated Eosinophil count of her esophagus. Let's all begin to pray now that our counts are at zero.

The problem though is a catch 22.. Annabelle needs to be cleared for surgery and anesthesia - her cough though is horrible. It's getting progressively worse and clearly more uncomfortable for belle the longer it persists. 

Because she cannot be vaccinated, our doctors have concerns about Pertussis (whooping cough). We're scheduled to be tested soon. 

Her bowels are another concern. Because of the tube feedings and her diet, Annabelle typically has a BM daily, if not more. Over the last two weeks however, they're becoming more around 4-5 days apart and causing multiple problems, not to mention terrible pain to Annabelle. Eosinophil associated disorders do not only attack the esophagus, they can also attack and damage the stomach, intestines and colon. While I'm hopeful this is simply a change in her GI system and possibly just a side effect from all her medications, it may be necessary to scope and assess the lower GI as well :/ I'm praying with everything that these issues work our bc prepping and the procedure for an upper AND lower scope and biopsy is terrible on Annabelle. My anxiety begins to rise already :(


Otherwise, beside the coughing and no pooping, belle is slow and still but in high spirits. She played outside a bit last night,  it was good to see her acting silly with her sissy on their little bikes. The night before, she wouldn't leave my lap for hours and just wanted to look thru photo books over and over and over and over. I had laundry, floors and dishes to do... Instead, I found myself looking at our family shutterfly books, over and over and over! Lol 

If we can make it to the weekend, AK and I have special plans for the girls. Any time we plan and/or invest to do something, we end up in the hospital - this week isn't a good start but we're hopeful we make it to the weekend with high spirits and can enjoy some family time before school begins for Mady :)

Monday, August 11, 2014

When a simple cough knock you on your butt...




It’s time to consult the specialist again.. Something isn’t right – our nurse, AK and I are all becoming genuinely worried. About two weeks ago, Annabelle began showing signs of a cold/cough. It’s onset was fast but we prayed it would be short-lived. It’s clear your feisty two-year old isn’t feeling well when you take her to a water-slide, pool party and she refuses to get out of your lap the entire time. She never got in the water.. we did however, manage to pull a few smiles from her with the help of bubbles (guaranteed trick, never fails). She was slowing down though.. she wouldn’t eat much and began to need pump feeds constantly.



After a few days it began to get worse and to the point our nurse no longer felt comfortable even taking her much out of the house. She now barely has energy to play outside in the afternoons – her mornings are the only time of day that she has much energy, and even then, she depletes quickly. Her coughing has become a high-pitch chocking / wheezing / gasping. The nights are worse, but not substantially that I would relate it to anything like croup. Her eating habits haven’t gotten significantly worse, but they’re still not where they need to be. She’s undoubtedly lost weight. The high-pitch cough is what scares me the most. Coughing and retching (gagging) is what terrifies me. When she begins to vomit / needs to empty her stomach via tube, that is when we begin playing with fire. When we have to drain her stomachs contents, she loses her counted nutrients that she needs to stay balanced to ensure her ammonia levels don’t spike and begin causing worlds of problems. That’s where we are now. 

We still haven’t managed to get the last EoE relapse under control, even with diet eliminations and protection while playing outside. Annabelle wears a mask most all the time while she is outside. She cannot dare go out if anyone is/has recently mowed the grass. We don’t even cook foods that could set off her EoE inside our home anymore. Our entire family has lost meal items in hopes we can bring Annabelle’s EoE under control by eating and being around only the safest foods possible for her. It isn’t working. We’ve ramped up the medication without luck and are back to putting her in a bubble 99% of the days. Again, no luck. 


Yardsale & Lemonade Stand this weekend to raise money for Annabelle 8) 
These precious little girls did a great time advertising, marketing, bribing and pouring lemonade for a great cause. I am so humbly proud of these two young ladies, that are mature well beyond their years and worked all day to support other kids that aren't quite as blessed as you and I.
Rock on beautiful girls! You're doing bigger things that you could ever imagine!




So we hold our breath and pray.. .. .. .. and drink wine; because fruit is good for you ;)


This last spell of whatever has set her frail immune system into attack is truly doing her in. I have no idea how to stop it and so I’ve called and am hopeful to hear from our specialist soon. We do have an appointment on the books for next week to do more labwork and follow-up with some concerns, but I don’t think we can wait that long. I have no idea what to expect when I hear from the doctor today – my wish for Annabelle is for the least amount of pain as possible, but fast relief from this horrid, horrid disease that’s attacking her little body. I don’t know what other treatment options are even out there for kids like Belle. We get lost in this huge world of thousands of doctors, millions of medications and hundreds of tests… but no effective treatment options. Eosinophilic Esophaghitis is not a one size fits all treatment type of disease… Annabelle’s case involves mystery components that make diagnosis, treatment and management nearly impossible. I just pray, with everything that I have, that one day soon we will have the answers we need for our baby girl. Annabelle deserves a break in this fight, and deserves to know what its like to live and love life without pain. God hear our prayers for this sweet little girl!