Today marks the 100th Day since Annabelle last ate.
100 days since I last served her a meal.
100 days since I last considered Annabelle's "favorites" in my grocery shopping trips.
100 days since I last cut her food into tiny slices
100 days since I last served anything on "Annabelle's" plate
100 days since there was a highchair in our house
100 days since Annabelle's clothes got stained from food(!)
100 days since I feared Annabelle would choke on her next bite
100 days since I had to clean out her carseat from cracker crumbs
100 days since we last sat down at our family dining room table and said Grace together
100 days since we last enjoyed a meal in a restaurant
100 days of strategic formula measuring
100 days of calculating how many ounces x day Annabelle is consuming
100 days of keeping my house absolutely spotless from any crumb on the floor
100 days of medications around the clock to keep her healthy
100 days of heartaches at cookouts and trying to keep Belle distracted while everyone eats
100 days of having to explain to strangers, family and friends, "Do not feed her! Please, she cannot eat..... no, nothing.. not even that.. or that.. or that. Nothing!"
100 days of daydreams of the day when I can make her a meal again
100 days battling every doctor against a feeding tube
100 days of remission from Eosinophilic Esophagitis
There weren't many food items Annabelle was actually eating before we removed her from food March 27th. We had been slowly removing more and more foods from her diet until we found her diagnosis. But even with a handful of things to eat, she ate them.. and LOVED it! Her favorite past time was eating! Annabelle wanted snacks and food all day long, I swear you couldn't fill the kid up! She would make such a mess and rub her meal all thru her hair with the messiest grin you've seen. Most every meal ended with a bath in our house. She clearly had zero lady-like manners when it came to using her utensils and taking small bites. It didn't matter to her, she loved food and enjoyed every minute of it. I remember back at getting so flustered some days at how filthy her highchair would end up after each meal.. and now we don't even have a high chair (I made AK get rid of it the day we took food from her. I didn't even want it in our house for her to see). I wish I could go back to those days and serve my baby girl a meal again. I wish that sinking feeling in the bottom of my stomach didn't ache three times a day when she has to watch everyone around her eat and she cannot. It's just not natural.. and it hasn't gotten any easier on us, I wished it would. I've become more 'matter-of-fact' about it, but it isn't easier.. in fact, as more time passes, the harder it's getting for me. I'm getting antsy and want to feed her! I can't wait for the day she can eat again!
An update on the EoE front.
We have dates schedule beginning July 16th - 19th at the Children's Hospital of the King's Daughter's to begin the second of three phases of allergy testing to attempt a new food in Annabelle's diet. They will perform Patch Testing during this time and whichever foods she can pass from this test, we will move to step 3 and compare those against bloodwork. The foods she passes from all three tests performed, we will consider which food we want to trial for 6 weeks. We cannot wait for a food trial! This will be Annabelle's opportunity to potentially to find a safe food!!!
Now. Deep breath.
If we cannot determine what is causing Annabelle's temperature fluctuations, seizures, irregular rapid weight gain/loss, spontaneous pain, inability to stand/walk at random times, growth concerns etc. Our Allergist and Gastroenterologist have decided that we will have to cancel the attempt at a Food Trial this year and wait until she is healthy enough to challenge the next two tests and also a Food Trial. We cannot trial past September because we will be entering the Cold/Flu season and we cannot risk jeopardizing her immune system over a food trial if she gets exposed to the flu, which is easily fatal with such a compromised immune system. If we cancel the trial, we will not be able to attempt this process again until late next spring / early summer. That means there is no chance in my little girl eating again until next summer.. this gives me all the more reason to find answers and explanations for my sweet little girl as soon as possible!
Annabelle is an absolute rockstar. She has conquered 100 days without food. Every ounce of her nutrition has come out of a disgusting sippy cup containing a Medical Food designed to be delivered thru a feeding tube, it's completely amnio-acid based and tastes as bad as it sounds. Could you go 100 days eating only something that tastes that horrible? Wearing such an incredible smile as she does? Annabelle continues to amaze me each and every day.
100 Days. . . . I never would have imagined.
This is what it has taken to make it this far. This is Annabelle's daily diet.
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