This week has been a little bit of a roller coaster for Annabelle. Not all terrible, but not wonderful either.
Again, I apologize for the lack of timely updates - I have been struggling myself processing what is happening to our family. It's getting harder as the time passes without answers. I am watching how this is affecting Mady, how the fears and stresses are putting a blanket over our family and we are trying our hardest to stay strong during this time. AK has been working out of town a lot lately, Mady has been testing boundaries and Annabelle has been showing signs of being sick.. not to mention the touch-and-go of our food trials. I have vowed to myself to only take each day, minute by minute, then hour, then day and not look ahead at next week because I will be consumed. It's quite a conscious effort and requires daily - sometimes hourly self-pep-talks, but we are going to make it out of this. I know we will.
While AK was out of town this week, the girls got sick. It started with our sitter and myself, then Mady started running a fever and I just knew there was no turning back from protecting Annabelle. Usually if one of us are sick - the entire family is quarantined away from Annabelle in order to protect her immune system. There was no escaping it this time. Monday night and Tuesday Belle began running a fever. She was vomiting and generally uncomfortable but still able to get around. She screamed her little head off all night Tuesday night. Her fevers were impossible to maintain but finally stopped moving around 9pm and stayed about 99.2. She had a couple more spells of messy diapers and vomiting episodes but fortunately she never stopped eating and drinking which was a huge relief. This was a HUGE test for Annabelle and her immune system. The last time she caught a 36 hour bug, she was sick and couldn't stop vomiting or passing liquid stools for SEVERAL weeks. That illness is what brought us to our first diagnosis of EoE. The doctors all agreed there was something very wrong with her immune system and we discovered Eosinophilic Esophaghitis was the culprit. This is the first time since last March that Annabelle has gotten sick and I prayed with every single thing I had in me that this wouldn't knock her down and hurt her too badly - this was the moment myself and our doctors have been fearing for months..
I am beyond happy to say that by Wednesday, Annabelle was ALREADY bouncing back to her normal.. toddler self with a good day. My heart flooded with relief. This spell of a tummy bug really provided us with a lot of answers and unknown fears. It tells us that her immune system is working better than we hoped and with that - it solidifies how strong of a little girl Annabelle is. This surely does not bring us out of the woods. Eosinophilic Esophaghitis is an auto-immune disease and anytime she gets sick will become very difficult for Belle. But today we are grateful to learn that her system is in much better condition than we all previously speculated because of her latest symptoms. We are feeling SO, SO VERY BLESSED!
I checked on her in bed about a million times over the next couple days. When I tucked the girls in for the 100th time, recovering them with their blankets as they peacefully slept.. I curled myself into a ball with my back against Annabelle's nightstand and hugged my knees as I watched my baby girl sleeping. I watched her inhale and exhale.. I smiled when I saw her little lips sweep into her own smile and my heart flooded with warmth when I heard her coo from dreamland. I swear I could watch her sleep all night. I sat there and thanked her. How weird is that to 'thank' your child for fighting a sickness? I prayed for her, I thanked God and the Angels he sent to wrap her tightly during the last couple days, I thanked him for the strength he gave me to keep my chin very high and not get discouraged each time I was holding her little head as she was vomiting.. I just felt so reassured 'everything will be ok, this isn't the end.. it really isn't'. I thanked Annabelle for her incredible bravery and the strength I knew she had to put forth to get thru the last couple days when I KNOW her little body is exhausted beyond belief. She could have easily laid on the couch and sobbed like she does on really hard days, but she didn't - instead she picked herself up and with every ounce of energy and fight in her, she made it through a stomach bug that could have knocked her down, with flying colors. What an AMAZING child she is. If it were me, I would still be in the bed moaning over feeling cruddy. Kids are so resilient and Annabelle leads that strength.
Wednesday morning Annabelle began Speech Therapy with her new therapist. I was fortunate enough to be able to meet her before going to work. I needed to sign some paperwork and meet her personally; we discussed what my goals are for Annabelle and developed some immediate goals and stretch goals. I believe Susan will work wonderfully with Annabelle and I cannot wait to see how she progresses through this next level of therapy.
I have been speaking with our pediatrician a little more lately this week too. I didn't contact her during the tummy bug, but I did want to update her after it was over and brag about how well Annabelle handled it. We discussed the failed Food Trial of Sweet Potatoes and both agreed that if she continues to do well on apples, that we will not introduce another food for a long while.. at least another month or two. We are getting ready to enter the flu season and I cannot add or begin another trial during that time. If we do introduce another food, it needs to happen fast - but I want to make sure she is still tolerating apples easily before we make that type of decision. It's enough to make you want to pull your hair out.
Upside and Downside to Food Trials
Now that Annabelle is eating food again, she doesn't understand that the ONLY food she can eat is specifically what we put in front of her.. just because she is eating a food, still doesn't mean she can eat what we or sissy is eating. It's become quite frustrating. It's also led Annabelle to trying to be sneaky and sneak food when someone isn't looking. If you turn your back, she bolts into the kitchen and tries to find food and hide to eat it. (I know, freaking heartbreaking), taking the food from her and then offering the same applesauce absolutely breaks her heart and sends her into pouring tears in less than 3 seconds. That being said, it's actually been harder than I expected a food trial to be. I didn't really consider this being a result of offering her food again.. it was almost easier to not give her anything at all. :(
The other hard part is while she LOVES the new taste of apples, in any and every form you can imagine - that means she is no longer interested in her Amnio-Acid Based 'Medical Food' that tastes like vomit. I DO NOT BLAME HER! We are trying diligently to only offer formula before offering anything delicious so that she is still taking in enough nutrients from Elecare. Our pediatrician and GI both have a lot of concerns about her quickly becoming malnourished again because of the Food Trial process. Apparently this happens a lot.. kids get a taste of delicious food and only want to eat that - however they cannot thrive on apples alone and still need the nutrients from the Elecare to stay nourished. It's getting easier, and really the best time for me to get formula in her is during the nights when she wakes crying. She hasn't slept through the night in months.. but usually when she wakes, if you can calm her down quickly, she will take a cup of formula and try to go back to sleep if she isn't hurting too badly. If she's hurting, she will not eat (obviously). Each day is a battle but I believe we are getting through it ok. We have a great sitter that makes it a priority to fatten Annabelle on a daily basis, and for that we are thankful because she's doing a great job! Just one day of not getting enough nutrients quickly manifests into days and days of malnourishment and she refuses to eat again .. it then becomes a true heartbreaking battle. One day at a time.. with each good day, allows us to have a better tomorrow.. with each bad day, becomes a snowball of rough days. Staying 2 steps ahead is truly the only way to keep things moving smooth (one of the many lessons I am learning as we go).
Yesterday and this morning, Annabelle is having great days. She gets tired very, VERY easily. When she plays hard, she crashes hard.. when she has a relaxed day, she moves at a pretty steady pace. Last night she played her heart out, and crashed just as hard. In a lot of ways, it's typical toddler patterns and then in so many ways it's terrifying to watch how fast her body depletes of energy from doing simple kiddo tasks.
August 22nd. August 22nd. August 22nd. I am already nervous with butterflies! Here's to fingers crossed we can stay out of the hospital and safely ride into August 22nd when we meet with Dr. Teasley and her Neurology Team. I pray for only easy days until then..
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