Monday, January 12, 2015

We are stronger than this challenge; and this challenge is making us stronger.

Tomorrow we take our baby girl for her 7th Endoscopy in less than two years.
Tomorrow morning, my heart stops once again.
Tonight my heart races and I want to puke.

We are trailing so many foods right now. Recklessly. Annabelle has been eating wheat, soy and chicken. Typically with this disease, you trial one food at a time and scope/ biopsy to consider it a pass or failed trial. Tomorrow, we will go in and take a look at her upper GI system.
The doctors will explore:

  • any visual damage of her GI system from the disease, Eosinophilic Esophaghitis.
  • her G-tube site, and
  • the Nissen where her stomach and esophagus are sewn together. 
I have a lot of concerns about the integrity of the nissen and whether or not everything is still intact. If the Nissen is not still intact or is damaged, we will schedule with our main surgeon and he will have to redo the Nissen surgery (which we desperately do not want to have to do again. It's quite intense and requires a helluva recovery).


Sometimes I am blessed/cursed with a gut feeling prior to a scope, whether or not I believe the results will be good or bad. I have a yucky feeling that the results will not be in our favor this time. I don't have anything to go on beyond Annabelle's persistent cough and sheer luck. Luck that we never seem to have, so if we wish for good results - our luck will deliver us with bad. I hate being a pessimist, but I also hate disappointment. Something just tells me we won't have a great day tomorrow.
I pray I am wrong!!!!

Annabelle on the other hand has been doing SO wonderful. I cannot begin to describe how proud of her I am for trialing these foods. She goes back and forth between having an appetite and not wanting to eat anything. She hasn't eaten a ton of the foods we are trailing, but I think she's eaten enough to present indicators for the biopsys to pickup. She's been a trooper.

The most incredible part of the last month and a half we've been trialing, is the amount of growth and development I've seen from her! I literally cannot believe my eyes as I see her energy and strength. Literally. She's awake and so alert. She's very verbal and full of energy (sometimes a bit too much, but hey, she's 3!). She genuinely appears to be thriving from the nutrients she's absorbing from all these new foods.

The biggest news, her hair is growing. Yes, HER HAIR! For the kid that has fingernails and toenails that barely ever grow, and hair that NEVER EVER grows, she's actually growing hair! It was so brittle and frail in just October that it caught the attention of the doctors in Boston, and now it's getting longer and thicker. Absolutely, absolutely amazing. Albeit, a little nerve-wracking because I KNOW this is NOT typical Annabelle behavior. This is not typical growth for our Baby-Belle, but I am happy for the progress... and I am really, really happy to see my little girl sporting a pony tail for the first time in her life. Finally, at 3.5yo, we have a pony tail!


The 24hrs prior to a surgery or big day is always stressful and distracting. Today was no different. On the drive in to work I heard a news story that really tore at my heart strings. I remained distracted all morning despite the work in front of me. All I could think about was Madelynne and something bad happening to her. I kept directing my mind towards Annabelle because I knew all these thoughts were likely stemming around her surgery tomorrow morning, but I couldn't. They kept going back to Mady. Finally, around noon, I couldn't take it any longer and I went into crazy-mommy-mode and emailed her teacher. I apologized for sounding insane but I just needed to check to make sure Madelynne was alright in school. A few hours later she reassured me that Madelynne was fine and had a good day. I exhaled.

The afternoon went by very fast. I confirmed tomorrow mornings appointment and arrival times, and before I knew it, I was late leaving work. I picked Mady up from daycare on my way home and as soon as I saw her, I could tell she was upset. We got to the car and I scooped her up, "Whats wrong baby?" She just started bawling. She couldn't tell me what was wrong but kept saying that she had a really bad day. I told her that the teacher said she was fine and she agreed... then she repeated again and again that she was "just upset". As she is getting older, she's becoming more and more wise about her sister. She asks about death, sick children, what it means to be 'blessed', she asks why we thank god for our health when Annabelle is so sick, she asks what will happen when we go to the hospital and what will happen if Annabelle doesn't wake up. She asked if I will be sad... she is worried that I will cry too much. She has so many worries that a 5 year old shouldn't have but struggles to find the words to explain the confusion in her sweet young mind. I wiped her tears and we headed home. I promised Madelynne that her sissy was home waiting for her and I bet she's excited to see her.

We walked thru the door and quickly changed for dance class. Annabelle spent most her time watching her sissy from the door window. Waving at her big sister every time she looked her way.


Tonight, as I sit here and update, AK is finishing dishes and the girls are snoozing upstairs. We remind ourselves again how blessed we truly are. Despite life struggles, we are blessed beyond imagine. We are blessed for so much, but most of all, we are blessed to have you with us on this journey.

This is where I beg for our prayer warriors to do what you do best. 
Please, take a moment tonight to pray for good news tomorrow for our Annabelle that we all love so dearly. Pray for a healing body and the safety of the foods she loves and needs to keep so they can continue to nourish her body. 
Pray tomorrow morning as you get ready for work, school, your first cup of coffee or settled in for the day; take a moment and pray for the doctors that will surround Annabelle. Pray for the steady hands and knowledge to see all the things they need to help us. To continue to guide us. To deliver us good news. 
Pray for the anesthesia team to safely put our little girl to sleep and to quickly wake her back up. 
When you send your little ones off to school or when you pass a school bus or see a small child with backpack on, pray for my Madelynne that will go to school tomorrow morning without seeing her sissy, as we will already be in the hospital. 
Pray for Mady as she rides the bus to school and concentrates on all her important kindergarten things while her little heart and mind are in a completely different world, worried about her baby sister. 
Lastly, say a small prayer if you have time, for the ease our minds and hearts tomorrow as we once again hand our daughter off to a team that will carry her away from our arms. Pray for our strength to stand when we can no longer see her down that long hallway and pray that we remember to breathe during every second that passes until we can see our baby girl again. 
And we will pray for you. We pray every single day for all the family, friends, strangers and anyone else that has crossed our paths. We pray for you and your family each and every day. We pray for all the children that fight these lifelong battles. We pray for all the parents that walk our shared footsteps. We are so very blessed for all we have. We recognize our blessings and we thank God for every one of them. We thank God for you. 










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