Tuesday, September 30, 2014

Flights are booked! Benefit is in only FOUR DAYS!

Flights are booked! I wanted to secure our flights while there were still convenient flight times and seating on the plane for Belle and I. The prices weren't nearly as astronomical as I feared they would be - but they're booked, and were fully paid for by YOU! The funding and donations to Annabelle are what will be helping us fly and stay in a hotel while we're getting answers and treatment. Thank you, tremendously for all you've done - without you - we may not be able to fight for all the answers Belle deserves. With your donations - we can travel safely and stay near the best hospital in the country for our little girl. Thank you so so much!

On the other side of things, we're getting excited, eager and nervous all at the same time. We have been waiting for this moment for years - the appointment in which may be the answer for all our prayers: "A diagnosis for Annabelle". I do not wish for a label for my daughter, Dear Heavens, a label is so dangerous - it opens up a box of heartache and hurdles to jump for the rest of our lives. But there is hope and promise within a printed label. With a diagnosis, we will learn what has happened to her little body all along, we will learn how to care for Annabelle and what makes her sick vs what makes her thrive. We can rationalize and repair any damages that may have been done to her little system and we can proactively plan for her future. We can make so many decisions, and hopefully relieve some of her burdens (goodbye feeding tube? hahaha - a momma can dream, can't she?!) In the next few weeks, our family may finally get the opportunity to understand this incredible little girl, and being on the cusp of that moment - is just more anticipation than I ever knew possible.


This weekend is such a great distraction from thinking too much on the upcoming trip. We cannot wait to see so many friends and family that have supported Annabelle, whether it be just for a few weeks or for years since before she was born. This amazing little girl has been in prayers for quite some time, and I am just honored to be able to finally put faces with names, embrace those that mean the world to us in the tightest hugs you can imagine. I cannot wait for you all to see Annabelle and watch her strength, personality, energy and genuine love for life just bursting around you. She brings light and hope to every room she walks into - and we are looking forward to sharing that with you!

Again, if you need directions or more information on this weekends Benefit for BabyBelle, please let me know. Everyone is invited and we welcome you to join in the fun :) xo

Tuesday, September 23, 2014

Two steps in the right direction!



Where there is good, there is always the bad. Two steps forward and one step back seems to be the direction in which our family walks. This week was no different.. at least we did move two forward; it’s the weeks in which we move two steps backwards and only one step forward that make seeing the light a bit more difficult.


First and foremost – Annabelle is doing great right now. Her spirits are high, her cough from being intubated during the procedure is getting better, her energy is great and …. She’s now three. THREE! Can you believe it? A year ago from this time, I didn’t know we would make it to see her second birthday, and here we are celebrating her third and she looks so happy. 

Our rendition of a safe cake for Annabelle:
 


Miracles are happening all around us. We are in no way out of the woods, we are simply treading by the grace of god and prayers that things are going so well right now – but I do believe there is a light and we will have answers for this little girl soon. If we have made it this far, without a doubt, we will finish this marathon with flying colors! albeit, probably a little beat up, exhausted, broke and not quite in the same form we began the race – but our family will come out on the other side with great hope, forever changed and stronger than we could have imagined!


Biopsy Results Are In
Just as a reminder, in the spring when Annabelle relapsed, her Eosinophil count was higher than we have ever seen, she had over 50 eosinophils in the upper portion of her esophagus and more than 20 in the lower portion. The scope and biopsys collected last week are great! (Yes, do a happy dance!!!!!!!) There are ZERO eosinophils in the bottom of her esophagus and more than 10 in the top. This is the best news. It means we’re gaining control of the disease. The horrible drugs she is on and little food she eat, is actually a cocktail that is working to protect Annabelle’s GI system!
So for now, we cannot make any changes to our current treatment. Although the Eosinophil count in her esophagus is very low, it’s still a failed scope and means the eosinophilic esophaghitis is still active. We will continue the prednisone twice x day and continue the limited diet. We cannot introduce any new foods, but we also are not losing any foods! (Again, HAPPY DANCE!)

Now for the other side of these results. While we continue to do the happy dance, there is also another perspective that isn’t being ignored by our doctors.

When Annabelle’s labs were performed a few weeks ago, they indicated her immune system was struggling / fighting. Her eosinophil count was higher than we have ever seen in her labwork and secretly we prayed the biopsys from her esophagus would reflect those high results. They didn’t..which is likely a result that the treatment we have been doing specifically for her esophagus: pouring steroids down the kids throat twice a day and not allowing her to eat much food. This seems to be the key in keeping the eosinphils out of places they shouldn’t be (her esophagus). The problem though, if the eosinophils are NOT high and present in her esophagus, where we have typically found them… then where are they?! Has the disease spread to other areas of her body? Is her immune system being challenged by another form of auto-immune disorder we aren’t recognizing? Likely, yes – which is what we have assumed all along.

So what does this mean?
The biopsys from this scope have helped us. They’ve proven that Annabelle’s system is not only targeted by an Eosinophilic Disorder. They’ve proven yet again that something far larger and global is happening within her tiny body and Eosinophilic Esophaghitis, while terribly dangerous and life-altering, isn’t the main aspect we should be focusing on. We need to determine what is attacking and what global disease or disorder is Annabelle battling that could be the root cause to all her problems.  

What are we going to do?
With all our labs, old and new information, and our biopsy results – we have contacted the absolute best hospital for children with rare auto-immune disorders. They heard our story, reviewed Annabelle’s records and asked to see her immediately – in fact, they wanted to see her this week. As must as we absolutely would love to make that happen, this trip is going to require time away from work, flights, hotels and lots of travel… we couldn’t commit to a date this soon. We scheduled for the last week of October. They are so very eager to see Annabelle and help our family. I have spent numerous hours in the evenings making arrangements with their medical staff and providing necessary documents and test results. I feel like we have so many pieces of the puzzle and this last scope was just what we needed to prove what our intuitions have been guiding all along. Annabelle will be seen with one of the best Immunologist in the country and he will lead the rest of her team consisting of Gastroenterology, Allergy, Genetics, Endocrine and Neurology.

Our hearts are beyond thrilled, the anticipation and excitement for HOPE for our baby girl is more than you can ever imagine. The only feeling I can relate this monumental high from are those moments when you see your child for the first time and you fall so deeply, passionately in love that you could scream from the roof tops how happy you are, how much you are bursting with love and for how your life has just changed. That is literally the feeling we have right now. I have yet to look at my daughter without instantly wearing a smile because now I know, there is hope.


  • There will be promise for light in our family. Finally, we are going to learn what is happening to our daughter and I will learn how to safely continue to raise her and retain the smile across her innocent little face.
  • Finally, I can explain to the curious and worried big sister, what is truly ‘wrong’ with her sissy and I can help her understand what it means. I can teach my 5yo how we can help her.
  • As parents, we can finally answer to our far-too-mature 3yo, why her little body hurts, why she cannot go outside, why she must wear a mask, wear a tubey, become a pin cushion, and why her little legs just don’t work when she gets too tired.
  • Hopefully I can begin to understand her pains and irrational body responses to simple childhood things like an ear infection.
  • As a mommy, I can comfort my baby and genuinely begin to understand what hurts and why.
  • I can comfort and protect my daughter and not constantly fear that I will accidentally hurt her bc her body just doesn’t respond like a normal toddlers should.

These fears, wishes, worries and hopes that flood our family and haunt AK and I as parents are the only prayers we wish to be answered, they’re all we want for our family right now.


In one month we will travel hundreds of miles away, with no questions asked and only one simple focus: Hope for Annabelle. The light we have been searching for years, the prayers you all have silently prayed to help our family, it’s visible and I couldn’t be more blessed and humble to have you all supporting and cheering our family on. Thank you so very much. Sincerely, from the bottom of our hearts, thank you!


If anyone that has traveled for medical purposes or has any suggestions or helpful advice, please please share. I will likely be traveling alone with Annabelle due to the costs of travel for both AK and I to go together. This trip will cost our family tremendously and I have no idea how to begin making arrangements:

  • Flights
  • Hotel
  • Transportation when we get into the city
  • Unpaid, lost time from work
  • And the possibility of insurance denials since we are traveling out of the state.
  • Without a doubt, the costs for tests, procedures and consultations with a slew of doctors – praying with the help of some type of insurance coverage.

 If you would like to help or support Annabelle, her benefit and fun night out is planned October 4th!! Please, join us and wish this little girl all the luck in the world as she travels towards the light at the end of her tunnel and finally gets answers she deserves. If you need directions or more information, email me and I am happy to share: a.bishop08@hotmail.com


Thank you all so very much, from the bottom of our hearts we love, pray and thank all of you for your selfless support for Annabelle and our family. We hope to see you all very soon and will continue to keep you up to date as we move forward!
xoxoxo

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!!