Today Marks Seventy-Five Days Without Food

Today marks 75 days, seventy-five days since I last fed my kid. The first couple weeks after receiving the diagnosis, Annabelle was sick. She was miserable, tired, weak, vomiting and so unhappy. We knew food was poisoning her and making her ill, we knew the medications would help so keeping the food away and treating her with meds around the clock was like second nature and I never batted an eye. Move forward to Day 75. It's getting harder. And I don't know if I am saying that on Annabelle's behalf or my own. She is feeling better and starting to become more interested in food again. For a long while, she didn't want any part in a dinner table and could care less if you ate a bowl of ice-cream in front of her. But now, anytime you cook or are eating, she stares at you with a mouth wide open like a baby bird and will cry with tears pouring off her chin if you don't feed her. We don't feed her, she cannot eat any food. The only thing that she can even remotely 'eat' is Neocate Nutra and it isn't even food.. it's a amino-acid/vomit-flavored formula with gelatin. Basically it's the same crap she drinks, except she can eat it off a spoon. She is grateful for it, without a doubt, but she's not stupid. She knows we are eating food and she wants in on the fun. It's starting to really break me down. It's pulling at my heart strings so heavy that she wants to eat and it makes me tear up just having to tell her 'Im so sorry sweetheart, you cannot eat'. As soon as she hears those words, she collapses in tears. It's.Breaking.My.Heart!

Last week at the allergist I asked her while we were talking, is there ANYthing that I can give her? Is there any flavoring or other substance beside the formula that she can have? Anything at all? We are really struggling at home and I would like to be able to give Annabelle something, is nothing safe right now? She told me that I can give Annabelle two things: Cream soda flavored dum-dums and smarties because neither are made from natural ingredients. They are both artificial sugar and *should* be safe for her to have, take it slow and give it a shot, maybe this will buy you some time as we get thru food trials. I was beyond esctatic; over the MOON happy to hear this news. Thursday night I went to CVS and bought TWO bags of dum-dums & assorted candy! Friday evening was Mady's preschool graduation and Annabelle was promising to be a basket of energetic fun. Sitting in the church pew, an antsy 20mo was begging for entertainment when I remembered the smarties that I shoved into the diaper bag. What timing? I gave her one tiny piece of the smartie.. you know, one little pill shape and handed it over. She looked at it and then looked at me, repeated this process several times until I told her, "It's okay baby, go ahead, eat it!" she licked it once and the biggest smile came over her face. Licked it again and smiled. She refused to eat it all at once, I kid you not, she held that tiny piece of candy between her little chunky fingers for over 45min savoring every last taste of it! I can't begin to tell you how happy I was. During the night, I gave Annabelle a total of three pieces of smartie candies.. not three little packages, three little pills if you will.

 Saturday morning Annabelle was not herself. She was extremely clingy, whiny and generally unhappy. She slept in Saturday morning and soon before 'lunch time' she needed another nap. Around 2:30pm she woke up screaming and very uncomfortable, she then began vomiting all over me and her bed/bedroom/floor, the works. I gave her a bath and she was still very uncomfortable, crying and moaning. After she was cleaned up, I took her downstairs where she began wheezing, coughing and choking, on absolutely nothing. I knew she was either having a terrible reaction to something this morning (I have no clue what!) or this was some sort of vicious EoE flare from yesterday's three pieces of candy. I began our EoE Action Plan, started her on steroids, pushed the Pulmicort, began nebulizer treatments and begged her to start hydrating with water as I know this can quickly lead to days of vomiting. Fortunately, she settled by Saturday evening, ate a small bit and was asleep rather early. She woke around midnight, crying but settled back down after another round of meds and a cup. She slept again until 8:00am Sunday morning, but woke up sleepy and not feeling well. She took many naps Sunday and moved around really slow. Saturday and Sunday both were not filled with many smiles or laughs, instead she spent a good deal of her time lounging around on us or crying over every small thing. She also wasn't asking for food anymore.

I am kicking myself SO HARD. I am more mad at myself than you can imagine. I was impatient. I asked to give Annabelle something to eat and I should have darn well known better than to push our luck. I risked giving her a food that could jeopardize a food trial, I risked further damage to her GI system and I put her immune system in that much more danger. I am so freaking mad at myself!! I should have known better! I do know better, but I was seeing thru blurred eyes and listening to my babies tears instead of thinking logically. I will never let this happen again. I should have known better and should have stuck to my guns. :( I feel terrible.


Getting back to the Food Trial conversation. We have dates set to begin Patch Testing.

Tuesday, July 16th - Phase 1. We will begin the test at the hospital, CHKD in Norfolk with the allergist. During the consultation we will determine what we are testing and apply the patches at that time. I will go home with plenty supplies to keep the areas cleaned and dry, extra tape if necessary in case something becomes detached, etc.

Thursday, July 18 - Phase 2. We return and have the results read exactly 48hrs after placement. The doctor will read the results and redress the area. Our doctor will be in Chesapeake this day so we will meet her there.

Friday, July 19 - Phase 3. We return to Chesapeake again to have the final results read, exactly 24hrs after the last reading. This will complete the Patch Testing and we should know from that point which foods we want to consider for the next step of testing.

Once we have these results, in combination of the last skin test, we will move ahead and schedule blood work. With all three of these results, we should have a pretty good idea of which foods are considered safe, from an allergy stand-point ONLY. Of these remaining foods, we will sit down and discuss which things we want to begin to trial. Things we will look at are: what can she gain the most nutrients from, what is the most versatile to cook with, will she even eat this food? For example: If we had to choose between celery and sweet potatoes, clearly we would not choose celery that offers practically nothing nutritionally and you can't do much with it beside eat it raw or cooked. Sweet potatoes offer SO many nutrients and I could cook them in 20 different ways. Make sense? So once we have all our results, we will take a look at what is in the pool to consider and then decide from there what we will start trialing. Since our patch testing doesn't begin until next month, it's safe to say we likely will not begin foods until August. I promise to be more patient until then, but deep down, gosh I cannot wait!

Here's to hoping the rest of the week is smooth sailing and Annabelle is feeling better sooner rather than later from last weeks candy fail. She was up last night around 2am again and had to be woken up this morning at 7am and was not very happy about it. Hopefully today is the last day of feeling yucky, I hope it passes thru the rest of her system easily without too much more issue. Although, now that were at Day 3, I wouldn't be surprised to see the day become quite a poopy mess, yum. Get better prayers for the poor sweet girl, and fingers crossed she forgives me for even giving her the candy in the first place!