We're in the midst of our first food trial in years. Annabelle chose to trial Pig (pork, ham, bacon), we are thrilled to have the opportunity for another protein in her diet. When we agreed to do a food trial, we made a compromise and promise to Annabelle that this would be our last trial thru her disease until she is much older and she can make these decisions for herself.
In a perfect world, we would want so much more for our daughter. We would want her to be able to enjoy a birthday cake, or eggnog, or a cookie and trick-or-treating, we would want her to be able to run, skip and swim all day without pain, we would love to allow her to play in the chick-fil-a jungle gym at Christmas or attend an inflatable bounce-house birthday party without wearing a face mask. Then again, in a perfect world we would also wish for Madelynne to be more flexible so she could do the splits like her sister or have a dash more common sense so she doesn't walk into walls or trip over air (laughing, but that's so my kid lol) - reality is that we have and love our children just the way they are. We wouldn't change their personality, abilities or limitations for a second but we do pray for a happy, healthy and pain-free childhood. Our only goal in raising our girls are to keep them as healthy, safe and loved as we possibly can and let God do the rest.
That being said, I do want to share that our family is coming to such a peaceful place with who and where we are. I am so happy to say that - wow - I literally just exhaled. For years it's felt like we have swam against the current in fighting for our daughter. And we have! I have stood toe to toe with Physicians in more hospitals across more states than I care to count. Together as a family, we've spent more holidays in a hospital bed than we should, I've wiped more tears and held down a baby like no one ever expects to. AK and I have spent so many sleepless nights, ridden with fear and worry for our family and it's all finally taken us to the place we are today. Those fights, tears, sleepless nights, money, heartache and brokenness was all to carry us here... I wouldn't change a single thing to be where we are. In peace with the brokenness, finding grace thru the pain and seeing all the blessings that God grants yes.
The amount of clarity in our lives that I parent with now is priceless.
I wanted to share that insight of our lives to bring you to where we are with Annabelle and in our family today.... let's start with the least painful:
Insurance has denied all our appeals for Genetic Testing.
The denial letter states, "Based on the review of the information provided to us, the service you have requested (Exome Genetic Testing) is considered investigational/experimental and is not covered. Your doctor has requested genetic testing for you and your mother due to your medical conditions. Medical studies do not show that this test improves health. For this reason, it is investigational and not medically necessary. This decision does not mean you cannot or should not receive this service. But, this decision means that if you do receive the service, it will not be covered on your medical plan."
My heart drops for our daughter. True, Genetic Testing IS experimental, but it is the only way to know what is genetically wrong with Annabelle. We have spent years, tests and so much money in preparing for this Genetic Testing, we were so close and now insurance will not participate :( Basically, they don't want to play along because we cannot guarantee the test will find anything (we're 99% certain it will, but we have to look first!), and if we cannot guarantee it will find something, then we cannot guarantee it will change Annabelle's Plan of Care.
I CAN guarantee though, that having this information, and the ability to finally label and understand what is wrong with our baby girl, we WILL be able to improve her quality of life, care, we will be able to recognize what helps/harms her system. We will have a label for doctors that opens up so many doors to providing her the best treatment possible. We will know how to advocate for her, find her the best doctors that specialize in her case, and not walk blind into the unknown world ahead!
- Tiny example: Insurance denies our wheelchair for Annabelle. Why? Because her only diagnosis of Eosinophilic Esophaghitis, a GI Auto-Immune Disease, does not impact her ability to walk. Absolutely true(!), but the undiagnosed side of Annabelle DOES impact her ability to walk, muscle strength, endurance, fatigue etc. None of those things are associated with EoE, but Annabelle experiences all of them. And until we have a diagnosis that reflects ALL of Annabelle, she will never get the services she needs to live the best life she can - aka: wheelchair. So for now, we pay cash.... bc we don't have a diagnosis... clear as mud?
Now for the unpleasant news that I didn't want to have to share.. Annabelle's body is crashing.
Everything had been going so well! She had been enjoying life so much in fact, that I've remained terribly secretive in sharing the good news for hopes of not jinxing it (haha, a little superstitious, I am). Until week 7-8 of her food trial, we had hopes that she would be gaining pork into her diet without issue.. Unfortunately, right before Christmas, the progress came to a screeching halt.
The night it all began, Annabelle was making Christmas cookies with her cousin, sissy and friends.. in the midst of the fun, she came to my side with eyes the size of quarters and told me something was wrong and her boo-boo's were hurting again - I assumed her belly was bothering her from dinner or extra sugar, but she wouldn't leave my side. She curled in my lap and I could feel her exhales and moans - with friends and neighbors surrounding me, my mind raced and instinctively I knew "this is it.... she's turning a corner.. hold on mama, it's begun" - But that's the worst part of this disease and the rest of Annabelle's body. When she begins to spiral away from us, we have absolutely no clue how to rescue her and stop the painful manifestation. I gave her meds and started removing pork from her diet in hopes that the pain would start to subside. Days before Christmas, I called her team in Cincinnati and reported what was going on. They scheduled us for a scope at the end of January and we all prayed she would improve so that we could complete the 12wk food trial and have a clear answer if we can keep pork in her diet (we so desperately wanted this source of protein).
Around New Year's, Annabelle was again laying on the couch watching TV. I went to her side to check on her and noticed piles of hair around the couch. I immediately snapped, "Annabelle Grace! Did you cut your hair?! Where did you get scissors? Where did this hair come from?!" She was so surprised and disappointed as she cried back "I don't know mommy! I didn't cut my hair! I promise!" Her words sounded innocent so I cleaned the mess and went back to household chores.. sometime later, while standing in the kitchen, she began to have another bout of pain where she started ripping clothes from her body, kicking the blanket off and then . . . . ripping her hair out while crying. My stomach sank so fast I thought I would vomit. Immediately after consoling her, I phoned Cincinnati and put in a mayday call to get something started about getting her help asap.
Within days (this past week) her body began to shift again and her cardiovascular system began to show signs of dehydration beside being overly hydrated. Between her heart rate continuing to rise (Pulse: 103) and her blood pressure dropping ( BP: 81/55 ) more and more with each day - we knew something was happening to her little system. By Thursday, her doctor instructed us to stop giving her pork and take her to the Emergency Room immediately. Annabelle's nurse and I have been watching her like a hawk. I spent most the week at home with Annabelle where we could keep a close eye on her changing little body.. her nurse and I agreed to continue working hard at home to keep her hydrated and try to get her BP up on our own to avoid the hospital. Meanwhile, Annabelle went onto three Physicians stand-by lists for the next available time slot for an Upper and Lower Endoscopy. We waited, we prayed like crazy and waited....
By Friday, things continued to get worse. Her blood pressure lying down was 100/58, pulse 78 - pretty good for Annabelle :) However, while sitting her BP was 94/60, pulse 89 and once she stood up it dropped to 85/44 and pulse 92. Each time Belle stands up, she tries to vomit and will seldom fall back down. She's screaming in pain, refusing a lot of foods, coughing and choking on everything and generally declining. By noon on Friday, I spoke with our team again and they called back within the hour - We needed to get her Cincinnati as soon as we possibly can so they can treat her right away if she crashes any more. They're admitting her first thing Monday morning and her doctor gained privileges to the OR on Tuesday (not his allotted OR / Surgery day) and we will investigate then what is happening. At this point, sadly we've sacrificed our food trial :( I know, in the grand scheme, it's the least of a concern but in the back on our mind, we really did want this for Annabelle. On the surface, something terrible is happening to our daughter, and we have absolutely no idea where to begin.
Tomorrow morning, Sunday January 8th, AK is taking us to Baltimore Airport where Annabelle and I will take a last minute flight to Cincinnati, Ohio. The weather in VA has not been friendly this weekend and I don't want to risk the drive thru the mountains, especially in the condition Belle is in right now. Unfortunately AK cannot come with us :( He has to work and stay home with Madelynne, so I recruited my Grammy for the adventure. An extra set of hands sometimes is helpful when I'm alone, so I am looking forward to the help on this trip.
We do not have a return flight because our doctor couldn't tell us how long he plans on keeping Annabelle... he said she won't be able to come home until we learn, resolve and improve whatever is happening to her little body. My prayers are that we won't be gone more than a week, but heavens knows how long we will be living in the hospital during this time :( As eager as I already am to get back home to my family, I do know that the best for Annabelle is to stay in Cincinnati until she is comfortable and no longer in pain, regardless how long it takes.
From the bottom of my heart, I offer my apologies for the delay in an update.. I truly wanted to only share good news with our prayer warriors and family for Annabelle. My heart shatters to share this news, my heart sinks with every word of sadness in such a wonderful time of the year. Half our family celebrates the joy of the season as one of our daughters spends the weekend building snowmen with friends and Annabelle returns to a hospital to face her reality .. the reality of a 5 year old, Kindergarten little girl suffering, struggling in pain, unable to balance her body and flying an emergency flight to leave her family behind and head towards more pokes, surgeries, hospitals and procedures where they will inevitably break her spirit and remind her exposed and gentle soul that the world is cruel and unfair.
My . Heart . Shatters .
For all of us, me myself as her mommy, for her daddy that has to say goodbye to his favorite little 5yo, to her sissy that has to spend every night with a soul full of worry, my heart hurts for you that has to read these words and learn once again that all your prayers for this sweet little girl have again gone unanswered.
I trust God hears them, all our prayers; I do not believe he makes bad things happen, but he allows them to happen in order to teach us and guide us and shape us. I trust he loves my daughter more than I, but it's so hard to remember sometimes. I guess all we have left is to trust that everything will be ok in the end, in the meantime we love her as much as we can, we pray for her comfort and healing, I will advocate for her the best I know how and hope our medical team can quickly and swiftly begin to comfort her body and rid it of pain. I also pray you will continue to keep her in your prayers, keep my little family in your prayers for a safe flight, safe travels and protected hearts as we navigate very difficult waters ahead, while hundreds of miles apart. Thank you all, thank you for loving my little girl as much as we do..