Two week countdown

I think it’s fair we share an update to you all by now.

Annabelle is doing alright, she’s stable but she uncomfortable. She isn’t in tremendous pain like she’s lived thru before, but she complains of pain nearly every day. She is very fatigued after bouts of playing or running around like a 4 year old does. Annabelle has a stable diet, although we are not certain it’s safe, she at least is being nourished properly. Overall, we are happy with how Annabelle’s health looks. As parents, it’s our own radar that typically gets set off first and then medically the doctors contribute/confirm our worries. For now, we are okay with the way things are going.. but we definitely have some concerns that will be addressed while at Cincinnati Children’s Hospital in just two weeks.

Allergy & Immunology

Over the last couple months, Annabelle has experienced random – fluke – out of the blue allergic reactions that transpire from nowhere. Some reactions are visible and you can see on the surface. Take this particular morning for example, last month she woke up and her face was so swollen she had a tough time opening her eyes. It took several heavy doses of Benadryl and almost three days before the swelling went down. She went to bed the night before perfectly fine. She woke up swollen. We have no idea what caused it.

She’s also had multiple GI reactions to things, of which I believe to be food related. Although I don’t have a clue what food could be setting it off as we haven’t introduced anything new to her diet for nearly a YEAR! Her diet has remained untouched and we only eat / cook within those limitations. The creepy, frustrating part of this disease she’s battling is that one day her body will accept a food without a problem and the next day her body will decide it doesn’t like that particular food. The sudden change in what her body’s immune system and GI system will tolerate can have a profound effect enough to set off the disease entirely, all the way from an allergic reaction to a EoE Relapse. You cannot predict if/when her body will change it’s mind on what is considered a ‘safe food’. You can only play safe, keep everything the exact same and pray you can eventually add new foods and they also be safe.

Our appointment with Allergy & Immunology will follow our visit with Gastroenterology and her surgery. Based off the discussions with her GI and the EoE Team in Cincinnati, we will then follow up with Allergy and Immunology to determine a better, safer game plan moving forward. Objectives for this appointment:

1.       Determine the cause of the spontaneous allergic reactions

2.       Confirm or deny safe foods that she is already eating

3.       With fingers crossed and prayers answered – If Annabelle is still in remission like she was in July, hopefully – HOPEFULLY we can add another food to our diet. We will need this Allergy and Immunology appt to guide us and tell us which new food is safest and most logical to add. (personally… I would love for the kid to have some/any kind of dairy. Dairy will open a whole new world for her. Secondly, eggs. At least baked eggs so she can eat baked things).

I’m not certain what the specialist will choose to do, testing wise, while we are there. Typically, it’s just a lot of allergy testing and lab work. Perhaps we will also do Patch Testing if were there long enough.

Neurology / Psychology

It wasn’t too long ago that we watched Belle, day after day after day experience heart-wrenching seizures and no one could explain where they were coming from. We sat in ER’s for days and nights on end when her body temperature would drop below 94 degrees and then climb above 104-105 within the hour. Doctors from hospitals all over couldn’t help us figure out what was going on. We paid cash for Brain MRI’s when insurance wouldn’t help, I drove to Johns Hopkins when Richmond was out of answers.. but we gained very little. All we knew was that each time Annabelle came back to us after a seizure, was a blessing. But each time her little body was subjected to the temperature fluctuations, seizures and drugs – more and more damage was being caused. Our doctors told us during one of our last visits that while we need to keep our prayers strong for no long-term damage, we need to be
cognoscente of it. They told us that we may not see the effects of damage until she is school age and she begins to drift off from her peers. My heart is breaking during the last several months as I am watching my baby girl do just that.

Our doctor, our nurse that works with Annabelle every single day, her preschool teacher and AK and I have all witnessed and share the same concerns with Annabelle. I’ve met with her school and while in many ways Annabelle is like the rest of her friends in her class, there are notable differences that cannot be ignored. Her teacher has expressed the differences she sees in Annabelle compared to her classmates. Her attention span is like a nat. You have to redirect and remind her what she is doing constantly. We have the same frustrations at home. I can give Annabelle a piece of paper and ask her to color the picture blue, within minutes she is cutting it with scissors bc she forgot what I asked her to do… and that’s if she can even focus long enough on the paper. She will get up during class and walk away, not knowing what the instructions were. And if she isn’t agitated and detached – she is drifting off and laying her head down on the desk for most the day. Her teacher expressed how tired she seems a lot of the time. While other kids are playing games, she may choose to go lay down by herself instead. The exhaustion is part of the disease and I know learning and getting to school takes more of a toll on her little body and energy levels than other kids, so that part I am not worried about. But the drifting away and remaining focused does bother me. It’s also a red flag on the education scale. It’s already been determined that Annabelle will likely not be ready for Kindergarten next fall like she is supposed to be (oh boy will she be HEARTBROKEN!) but we do need change in order to help her focus, learn and grow in school.

Annabelle’s nurse has mentioned for nearly a year about neurological concerns she has when she’s working with Annabelle. AK and I also see many things that are disturbing and simply do NOT fall into the category of “typical 4 year old”. Her smile is sideways, her eye left eye is droopy and doesn’t blink at the same time as her other eye all the time. She physically reaches up to make it blink at times … Annabelle says “My eye is silly mommy”. Our doctor is requesting we consult with the Neurology Team while we are in Cincinnati in a few weeks and we agree that the timing is probably right for Annabelle.

We’re scheduling a Neuropsychological Evaluation with the Neurology and Psychology Team… the tricky part is the scheduling. The appointment she needs is a series of three seperate appointments; Initial Consultation with the Neuro-Psychologist. Second we meet with the team of Psychomotrist who will conduct the several hour long testing. We have been playing phone tag for WEEKS and really struggling to get anyone to commit to a date on the calendar. Our biggest fear is that they won’t be able to work us in during the week we plan to be there. We simply cannot afford multiple trips. We don’t have the time off work or the money to spend driving the roads (forget flying, that cost is out of the question!), hotel, food etc. Our fingers are crossed that we can nail down an appointment time very soon.

Gastroenterology

Finally GI. Boy oh boy do we have plans for this team. As I mentioned before, our biggest concerns are what is setting off reactions and whether or not those allergic reactions were stemmed from the disease or made an impact to it. In July, our prayers were answered in the form of a true miracle – Annabelle for the first time in her life, was clear and in full remission from Eosinophilic Esophaghitis, Eosinophilic Gastritis and Eosinophilic Colitis. (These are NOT all her diagnoses, these are just the ones we scope for). Our GI specialist couldn’t believe how beautiful Annabelle’s GI system looked, nor could we. Because she had recently been taken off all medications and prayers were so strong during that time – we decided not to deviate from the treatment plan and we would just continue doing exactly what we are doing (no drugs, same foods) and perform another Endoscopy 16 weeks later. So here we are, ready to either confirm or deny that Annabelle is still in remission and that all foods she is eating are safe and that the floods of drugs are NOT necessary to be part of her diet. The other possibility is that we will fail this scope and find the disease active again in her GI system. If that’s the case, something will have to change with her treatment plan. We will either lose foods, or we will resort back to drugs and steroids for treatment. I don’t want either… and I guarantee Annabelle agrees. So for now, keep your prayers strong that she is still clear from active eosinophils and we can move FORWARD in treatment with Annabelle and NOT go two steps back!

So far, here is our schedule:

Friday, November 13^th – Leave Richmond, VA and begin our drive during the night to Cincinnati, OH. Annabelle gets car sick and nauseous, we are hoping that driving during the night will help her avoid the nausea.

Saturday, November 14^th – have fun. The only thing Annabelle remembers (or cares to remember) from our last trip was the Cincinnati Zoo. I do have to say, the zoo is the best zoo I have ever been to and a lot of fun. We promised Annabelle we would go back and we will. Our goal is to make Saturday a fun, comfortable day for her. We will play and have fun, we’ll have dinner and get plenty rest Saturday night.

Sunday, November 15^th – 1030am. Admission to the hospital. We will be admitted where Annabelle will spend the next two days undergoing series of GI Prep / hell, while receiving plenty fluids to keep her hydrated, Zofran to keep her from being so nauseous during the procedures and hopefully some play therapy to distract her.

Monday, November 16^th – 9am appointment with Dr. Putnam and the Eosinophilic Esophaghitis research team. We will review the last 4 months, discuss game plans for the days surgery and potential plans moving forward based off the surgery and pathology results.

330pm – Surgery Time

Tuesday, November 17^th – 930am Allergy and Immunology. This appointment is in a sister hospital about 45 minutes away from Cincinnati Children’s. We’re already praying that Annabelle is comfortable and stable enough for the drive to the appointment and back.

Thursday, November 19^th – Pathology results come in and give us the news whether or not Annabelle is in remission or the disease is active again. Depending on those results, will tell us our treatment plans. Thursday is the day we hold our breath!!!!

Friday, November 20th - Sometime during this day we are PRAYING we can coordinate for the NeuroPsych Eval and appointments.

Friday evening, drive home during the night.



Meanwhile, our schedule is: Exhale and get our notes, books, paperwork, records and bags packed. We will tell Annabelle next week what is happening.. there's just no reason to worry her and upset her so soon.

On a happy note, she has been having fun lately, playing dress up, going to parties at her school. We went apple picking this past weekend at Carter Mountain and Halloween Saturday she was princess Elsa, although she apparently got into the character of her sissy and pretended to be dead-princess-elsa. Silly, silly little girl. She's such a bright, fun loving, free spirited child!