No diagnosis, but big answers

First, I want to apologize for the delay in updating on our trip. Life hasn't slowed down for a second since returning home! Secondly, i'll cut straight to the point: we're not getting our diagnosis from this trip. Heart-wrenching, but there is still a light and blessing that came from our visit.


Monday was fast paced and absolutely insane. By the time Annabelle and I made it to our hotel room, we had just enough energy left to both take a shower together and unpack our bag for jammies and crawl into bed. The night went a lot easier than expected, I made her a cup and she watched TV until she fell asleep. I did not sleep in the bed with her and it worked out great for both of us. (Our girls don't sleep with us and trying to do so when we travel is always a nightmare!)

2am
This kid is barking her little head off. 
I knew her coughing was bad at night, but I didn't have a clue it was this bad! She's choking and coughing so badly it broke my heart. She constantly rolled around and moaned. The coughing wouldn't stop. She would smack her chest profusely in frustration... I cut off her feeding pump and hoped that would have helped. After 45min it wasn't getting any better, just worse! I finally woke her up and made her have some bites of a snack and a little water. She was so disoriented but ate plenty. Laid back down and REALLY started choking! Within 30min however, she was better and peacefully resting again. I turned her feeding pump back on around 530am and she slept until 630!

I spent the morning looking out our window at the traffic, watching my strong little fighter sleeping and filling out hospital paperwork. (why in the world do I procrastinate these things?!) She finally woke up and waddled her way to my lap where we talked for quite a while about the morning and what to expect. As she watched tv, I watched the clock. As she played her games, I finished packing all our things: 3 medical binders, charger for multiple electronic distraction devices, snack and diapers, things to show the doctors, list of questions, notepad and paper... etc. With just a few minutes left, I knew I needed to exhale before I started to vomit. My cousin made a quick trip to our house the night before we left, he gave me a special gift that he wanted me to take with me... a mother's prayer book.. I picked up the book and turned to the pages that he specifically marked for me to read. I cried like a baby. I can do this! I know I can. I looked at Annabelle sitting peacefully across the room, completely oblivious to the magnitude of how important this day is to her life, I looked down at my trembling hands and then my chin pointed straight up to the sky,

"Thank you Lord for giving this little girl to me. I promise to continue this fight for Annabelle today, I can do this. Lord be with Annabelle and let's all get through this together, please, please hold my hand today, help me ask all the right questions, open my mind and listen to their words, do not fear with my heart but lead the specialists with that gut instinct I've always had for this little girl. Remind me to breathe, exhale, remind me to acknowledge Annabelle in the room even when she's being quiet and help me carry the patience and strength this day is going to demand. Thank you so very much for always being here for our family and sending all the angels our way for the prayers and love. Thank you. Amen."

Annabelle was adorable as ever with her new outfit and bouncing curls. We loaded the stroller and headed downstairs. She was asking a lot of questions and I could feel her nerves building.. I picked her up out of the stroller and she clung her arms around my neck as tight as she could. "Sweetheart, I know you're scared. But we are going to the doctors today, and I know he will help us, ok. Mommy will not leave you, I promise. It will all be over soon and we will come back to our room, alright?" 

It's amazing how much a 3yo can understand when you speak to them honest and truthfully. She understood every word and we walked around the lobby until the shuttle was ready for us. 

The shuttle ride wasn't far at all, Annabelle played some games and watched out the windows as we moved thru the town with a few other families on the shuttle. I pulled out the prayer book again and decided to flip thru some pages to pass the time. I found one verse that seemed to stick with me for the duration of the trip. I bookmarked it and read it probably 50 times over the next couple days, 

Lord, give me hope.

Give me patience to cope

and a reason to keep on trying.

Take my trembling hand

Give me power to stand

and a faith that is strong and undying.

I don't know what it is about those words but they are just what I needed to hear and believe as the day progressed.

We finally arrived in the hospital and began to make our way to Immunology. That is where we spent our next 6 hours of the day, in that one small room learning, talking, begging and exploring ideas with some of the best doctors we've ever had the blessing to meet. 

Here is the run down on what we learned. 

• The doctor and team do not believe Annabelle has an 'auto-immune' disease. 

She did not meet multiple indicators that would make them believe it's auto-immune. Annabelle is presenting a much different array of symptoms that do not align....

• They believe our diagnosis will reside either in the area of Metabolics or Rare Disease. 

We consulted with a Rheumotologist while in the hospital and she too did not support an auto-immune red flag, but she did order multiple tests that will hopefully either lead or dismiss a diagnosis for Lupus.

• Annabelle is extremely malnourished. 

I was being 'smart', as I typically am, and asked the doctor, "Food? Diet? Doesn't she look healthy to you?" My frustration with Annabelle's diet is pouring out of every nerve in my body. I absolutely despise the fact that she's on such heavy drugs, steriods and has zero diet. I swear with everything that Elecare Jr (her medical food that she's been on since birth basically) is going to kill her. I really mean that.

The doctor responded very harsh, "No! She doesn't look healthy at all to me, she looks extremely sick and lethargic!" I told him, "Well, she weighs 32lbs.." He laughed quickly and said, "Well Mrs Bishop, she is fed nearly around the clock and takes prednisone twice a day. She BETTER weigh 32lb. But that doesn't mean she is nourished, and this child is NOT." 

He explained in a very tactful way that Annabelle is a typical patient suffering from Eosinophilic Esophaghitis that is being care for by a medical team that doesn't quite understand EoE. I did not request an Immunologist that specializes in EoE but it just so happened that we were scheduled with one of the top doctors that focus in Annabelle's leading disease. What a blessing in disguise, what a blessing for the perfect combination of doctor for Annabelle! 

He explained, Annabelle's diet is about the size of a pen tip. Her diet should be the size of a basketball. Her nutrition is based on the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. What happens when a toddler hits a growth spurt? They eat you out of house and home and you wonder how in the WORLD that small child just ate so much food! When Annabelle hits a growth spurt what does she do? She is fed the exact same feed, of the exact same measurement, of the exact same quantity, every single day, every day of the week and every week of the year. At the age of 3yo, her little body and brain are constantly growing and demanding so much to thrive. Her diet isn't allowing her to do so safely. 

When Annabelle hits a growth spurt, or demands just an ounce more than what she's getting from her diet, her little body turns on itself and starts breaking itself down. This is when we see the outward result of: lethargy, fevers, seizures, little balance, no energy, sleeping constantly, or at times, the exact opposite - extremely hyper and unresponsive. Annabelle's body is breaking itself down constantly trying to survive. We feed her nearly around the clock, 24/7, but in reality, she is so badly malnourished, we are killing her. 

I looked out the window at the cars driving 9 stories below our hospital room and my gut sank. I swallowed hard past the guilt and pain the doctors words had just caused and reminded myself again why we were here. I stood up to Annabelle's bedside and with a new game face - "Ok then. What do we need to do immediately? How do we fix this problem and what is a responsible game plan for starting Annabelle on food, because I do not have the GI support in Richmond to do this on my own. I will need guidance because there is a great chance I will be conducting this new treatment plan when I get back.

He assessed Annabelle. Her skin tone was several different colors, tones and textures, her pupils dilate extremely slowly, she has bags beneath her eyes and her eyes are sunken in, she hasn't had a BM in days and her mouth is dry. 

Her diet consists of very few fruits and veggies right now. We decided to conduct a new allergy test and determine which foods she still has an allergy to and which foods are safe to introduce from an allergy perspective only. 

Annabelle was not happy at all about the allergy testing. She screamed like I had never heard her scream before. She's been so good lately about lab work and tests, I couldn't believe she was this traumatized about an allergy skin test. It was bad, she cried, fought, screamed and begged with everything she had to not endure the test - but it was so essential. Before we knew it, we were finished. She turned around to the allergy tech and demanded an answer, "WHY YOU PUT HOLES IN MY BACK?!" I couldn't help but laugh at her innocence and frustration. 

To our disbelief, of the 32 foods we tested, Annabelle only showed a positive allergic reaction to ONE food. She is typically allergic to 75% - 100% of what we test for, and she's finally appearing to be growing out of her allergies. What a blessing. 

The only food she is allergic to from a skin test perspective is, Beef. I'll take it. 

The game plan is to introduce foods into Annabelle's diet very creative and thoughtfully. We need to meet with our Dietitian and GI in Richmond before we can begin a food trial. While having food in Annabelle's diet is a necessity, a hard relapse from Eosinophilic Esophaghitis is still life-threatening and an intro of foods must still be performed responsibly. We will evaluate what is in Annabelle's diet right now and then determine what foods she is desperately lacking and prioritize which should begin first. One food will be introduced, and 3-4 weeks later we will start a second food. Once two foods are in Annabelle's daily diet, we will perform another Endoscopy. 

This means over the course of the next three months, we will get two foods and scope / biopsy every 8 weeks. (Hurry up and wait, right?) It's a very very slow process but an essential one.

This is our main priority going back to Richmond. 

Secondly, we are instructed to put all our energy towards getting Annabelle into a Rare Disease Clinic as soon as possible. 

The two clinics we are recommended to consult with are either CHOP or Mayo Clinic.

Labwork

After spending hours in clinic, we headed to perform some bloodwork. This place was a bit more traumatic. Not only did Annabelle have a complete screaming meltdown and fight to not have to sit in that horrible chair with me as they drew blood.. but the entire wait in the waiting room was horrible. The doors for each room were made of tissue paper and we could watch as each child was called to the back and then hear them scream bloody murder. Talk about setting the scene for an already terrified toddler :(

Finally the day was over, and we were starving! Annabelle and I found a nearby restaurant, and promptly once we sat down, I asked her what she wanted to have "CHICKEN NUGGETS!" bless her heart. The poor child wants a chicken nugget so bad she can't stand it. She's never had a chicken nugget in her life and that's all she wishes for. That explanation was so difficult. She thought if she went to the hospital all day, and was so perfectly well behaved as she was, then she would get chicken nuggets from the doctor. Oh how disappointing!  Lunch was great, there were no chicken nuggets but it was a perfect setting as she called her daddy and told him all about the doctors. 

Our hotel was only about a mile from the hospital so I called and told them we would walk back instead of taking the shuttle. I wanted some fresh air and I think Annabelle and I both needed the time walking down the streets with the gorgeous fall leaves and cool wind blowing around us. She laid down and got some rest, she pushed the stroller and we laughed making goofy faces at one another the entire way. It was absolutely perfect. Everything about the walk back to the hotel was exactly what we needed, her and I. 

Once we were back into our hotel room, we took another shower and snuggled back into our comfy clothes. I texted a few people the update from the day, called daddy to let him know we were going to take a nap. Then pulled the curtains shut, phone on silent and we slept. Annabelle snoozed right away and I laid on my back thinking about the heart break of leaving that hospital without the diagnosis we prayed for but leaving with so much more information than I could have ever thought we would get. My worries didn't drown me far, I fell asleep almost as quickly as Belle did and it was wonderful. 

We got up around 530pm and I asked what she wanted to do. The night was young, the girls were free to do as we wished, anything, .... she wanted to go swimming :) The hotel had an indoor pool and games so we dressed appropriately and headed downstairs for a bit.

After the pool.. we took, you guessed it, another shower and then hailed a taxi to hit the town! We walked down the busy streets and took in the life of the city. I cannot believe I had the guts to do it, but we were only there once and her and I deserved the fun night out. We found a few unique toy stores, and then a restaurant of her choice for dinner. We both cheers'd our glasses and kept our pinky up during our undisturbed dinner alone together. It was a great night. The weather was cool but not cold, the timing was perfect and by the time we made it back to our hotel room, it was time to pack our things and get back to bed. 

The next morning we rushed to the airport and made our way back home to Richmond where daddy impatiently waited for his girls. I was so glad to be home, be back to my right-hand-man, back to my own bed, have a car but mostly - I was so glad for Annabelle to be back in her daddy's arms.