Along our rough road, there is a shimmer of light

Annabelle spent most her weekend struggling. She slept most the entire time, any and all fun she tried to engage in led her instantly back to her bed to sleep some more. I secretly prayed she would give us a definite sign of struggle so I would have ammo to take her to Hopkins. That moment never came so we made it to Monday morning and the phone calls between doctors, resumed.

Our pediatrician called to check in on Belle and gather an update from the weekend, we talked for a bit and shared concerns between one another on her energy levels lately. While on the phone we decided to review a couple of her latest tests and put a set of eyes on them again. I wanted to make contact with Hopkins sooner than later but I just didn't know quite where to start. She pulled Annabelle's labs from the last visit to MCV ER when they actually did her bloodwork. That Monday, in the peds office, we did labs and on Thursday MCV repeated them. Within the span of a few days her labwork went from 'normal' range with only high platelet counts, to all abnormal by Thursday in the ER. My jaw dropped with fury, "They told me in the ER that everything came back perfectly normal beside the platelets?!" I was so upset. However, with this information and all her latest labs, we decided that it may be a good approach to contact Johns Hopkins Hematology as a first step.

Monday's lunch was spent with a fellow EoE mom, it was a breath of fresh air and long overdue as life's chaos seems to continue to cancel our dates last minute! We were finally able to sit down with one another.. both of us scanning our phone's every 2 minutes to make sure our babies are ok, phone calls between doctors and then the occasional laugh at each other over what 'Normal Life' looks for us with these sick babies! Only another EoE parent can relate to the irrational conversations we exchanged over that budget lunch & heartwarming tight hug between one another.


Yesterday I contacted Johns Hopkins Pediatric Hematology scheduling center ... & like I said before, I have no plans! That was clear when the sweet lady on the other line answered the phone.

Me: Hi there, my name is Ashley Bishop, how are you this morning?
JH (Johns Hopkins): Im doing well Mrs. Bishop! How can I help you today?
Me: I have a little girl, a wonderful almost 2yo, but she is very, very sick. I need help. We are in Richmond and have been working in and out of the MCV Health System for months and it isn't leading us to any answers. My daughter's health is failing faster and faster - she has our doctors worried sick and me on my knees begging for answers. We need help and I am only her mommy, I don't know what to do or where to start.... we wish to move her care to Johns Hopkins but again, I am only a mom and need direction.
JH: Ohh, hunny. We are here to help you. We are here to put the deserving smile on your baby girls face and we will find you answers. Listen to me.... everything is going to be alright, it's going to be ok now. Let's start with the basics - what can you tell me? Does she have a diagnosis?
Me: She does. We have a GI Diagnosis of Eosinophilic Esophaghitis, however I do not believe that is the root cause to her current problems - though they could be related.. I don't know. She is having Neuro/Endocrine issues.. but the one thing that I do have for certain is a slew of abnormal bloodwork.
JH: Ashley, give me your phone number in case we get disconnected... hang on the line for me for just a few minutes, can you do that?
Me: Absolutely

I sat there.. literally on pins and needles. I have filled my heart, mind and body eagerly anticipating good news too many times before to know better than to get my hopes up with good news from today's conversation. I continued to tell myself to not expect too much... reminding myself the lack of faith that I have gained from the medical community... then I looked down at my feet, they were both tapping so fast - I looked at my hand and it was ticking my pen to my paper about a mile a minute - My face was unconsciously wearing a smile as I listened to the standard 'hold' music over the phone.

JH: Mrs. Bishop, are you there?
Me: Yes! I am here!
JH: How soon can you send me her medical records?
Me: Today - I can send them to you immediately! Anything you need, you tell me what you want.
JH: I just spoke with Dr. Chang of Peds Hematology and he wants to review your daughters records & he would also like to begin with a consult with Peds GI, Dr. Guerrerio who specializes in EoE Diseases. Let me give you this fax number and we will take care of everything.

I couldn't thank her enough. We decided to put Annabelle on the schedule for the next available appointment, October 16th with Hematology purely so her name is in the system and assigned to a doctor for time being. That way her records will be with Johns Hopkins if we decide we need to arrive sooner for an ER visit.

Dr. Chang and Dr. Guerrerio will be having a converstation about Annabelle's case in the very near future and if they decide they want to see her sooner, I will get a call from Patient Coordination to confirm what day/time we need to head towards the hospital. I have absolutely no idea what to expect from this, I still have nothing up my sleeve or a game plan but I feel like I do have my ducks organized in a row a little better. I was beyond impressed at how personable the young lady was from simply the scheduling center - the concern they had to request her medical records immediately - and a consult between two specialists?! This is what we've been praying for since April! This is everything Annabelle needs. My fingers are crossed that Hopkins is the answer for our baby girl.

Annabelle seems to be having some pretty intense high's and low's this week. She is spending an incredible amount of time exhausting herself over the most simplistic toddler tasks. Yesterday afternoon she was a full bundle of emotions. Her nights are spent extremely restless, up and down, fussing, crying, tossing and turning. I honestly don't know anymore if she is up during the nights in pain and no longer waking us up for comfort (because let's be honest, we can't and haven't done anything FOR her for the pain so far) or if she just doesn't do well during the nights. When I got home yesterday afternoon, she made it her mission to test every toddler boundary she could find. Finally she made her way to time-out which initiated a 3rd degree, colossal meltdown. I instructed her to retreat to her bedroom so the rest of the family could be saved from her ear-piercing screams. I let her cry herself in her room several minutes before I made my way upstairs. She had her face buried in her pillow as I crawled onto her bed and laid my head beside hers... she looked into my eyes inches away and cried, "Mamamama... sorry... sorry" I explained that we need to listen to mommy, we need to play nice with sissy and cannot scream in time-out. All the while I was consoling and explaining things to her in as few words as I could gather - she was a full basket of emotions. She was beyond upset, she was shaking scared and she was truly apologetic. Once she was finished I carried her downstairs as she gave her sissy a hug, kiss and said 'Sorry' for being ugly. The rest of the evening was spent with her in my arms and not leaving my side. If I would try to stand up, she would order me to 'Sit! Sit!' .... which sounds a lot more like an 'sh' sound, but that's for a different post - that is the speech therapist' territory ;)

I think most days lately are a battle of trying to be a toddler and a fight against her own body making life a living hell for her. She wants so badly to be just like her big sissy - she wants to eat food like mommy and daddy and to try new things - she begs to go outside and play like the rest of the kids in the neighborhood - she loves to play dressup, steal her sister's leappad, and drive the family nuts. She is a fighter because life has dealt her a set of cards that mandate she is stronger than ever to make it thru this, but she is also my baby girl. She is that little baby I didn't think was possible.. she is the kiddo that darn near tried to kill me from nausea during my pregnancy and the preemie in the NICU that ran laps around all the other babies to go home. We should have known from the start how much of a ride Annabelle was about to take us in life when she came into this world. I just could have never expected this journey to be filled with such lonely heartache, daily struggles, loss of faith in the healthcare system, a new perspective on life's priorities and the most intense love for such a crazy little girl that words cannot describe.



Annabelle is a strong little girl. She is a fighter and has a heart like you wouldn't believe. She has a temper and attitude like her mommy but the sweetest disposition just like her daddy. She is the perfect piece that completes our family, but without that piece we wouldn't function. Annabelle is truly struggling right now. I've never been so scared watching her emotionally process what's happening to her body. I cringe when I hear her screams and crying on a daily basis - but I never knew how deafening her silence could sound until now. Watching her silently deal with her own pains.. emotionally try to grow into a toddler while constantly being defeated in every effort she makes.. having to remove her from each and every aspect of life that should be 'normal' for a child to play / eat / visit, she is wearing us down, she is breaking our hearts.

We are all so very tired & physically exhausted, including Annabelle... however we are now all emotionally draining ourselves faster than ever before. I think MCV's adventure last week sealed that for us. We need to be re-energized - we need good things! We need more reasons to smile, although they are surrounding us everywhere - the fog is getting more and more thick as the days pass without answers for our baby girl. ANNABELLE needs more happy days! She needs to remember why she needs to fight before she becomes too exhausted not to.