Hey you little booger. I sat here two nights ago and had written a very lengthy, emotional driven letter to you. Guess what?! It got deleted. Total bummer. I literally sat and stared in shock at the screen for the remainder of your and your brother’s nap. Worse things have happened. I’ve never actually used the phrase, but it feels appropriate and slightly sarcastic, but… this too shall pass.
So we had another follow up with Dr. C of the Kids Eat Program through Baptist and Speech Therapy the other day, and it felt like everything went really welI. It felt like we got a lot of very good information and I was involved in a lot of the decision making. You’ve been concerning me over the last three months because your weight has been at a stand still. You’ve been rocking back and forth around 13 pounds, and let’s face it, that isn’t that great. You’re currently in the EIGHTH PERCENTILE for your weight, which is pretty awful. I was basically told that your length and head circumference are measuring fairly normal and that you are getting just enough nutrients to grow, but not enough to put meat on your bones. I feel like I’ve been told that things were fine by past pediatricians, but have left appointments feeling less confident in your progress than I had before going in. It started to get really frustrating, and I wasn’t getting the answers that assured me there was proactive discussion, thought and time put in to your diet plan, your goals or even discussion over the problems you are currently facing.
You’ve been sick for almost three months. Throwing up constantly, hacking, wheezing, coughing and to the point where you just let it all out. Your dysphagia, which is a fancy term for your inability to swallow, gives you lots of problems when you get so congested. You have a hard time as it is tolerating saliva, so adding a thick, foreign mucus to the mix makes it unbearable for you. I have felt really helpless over the last three months, left without answers to why and what is going on. I have studied your reactions to certain allergy-related things around you, and what triggers your sickness. I believe it has mostly to do with allergies to dust, pollen, dander etc. I’ve been doing a lot of research, and contacted your pediatrician about Eosinophilic Esophagitis. Symptoms and associations with your other birth defects line up with this, and I feel like it’s important to see a GI specialist to try and narrow down what is going on in there. They will test you for this in a couple of weeks. EOE is an upper immune system disorder, where eosinophils (white blood cells) over produce in the esophagus when allergies are present, causing swelling, vomiting, fatigue, dysphagia, and so on. When we met with Dr. C, we spoke about amino-acid based formula, a hypoallergenic formula that is used when EOE is diagnosed. She didn’t want to wait to get you on it, in hopes that it can help you now and get your weight up without wasting anymore time. So I have started you on your new amino-acid based diet, and you seem to be tolerating it very well so far. I hope this is the start of giant steps in progress for you. I am not getting my hopes up too much, but I feel more confident as you have begun receiving the support from doctors that I’d hoped for.
We will get down to the bottom of whatever is going on. And it could be nothing. You could just literally have the hardest time ever swallowing, have awful allergies, and just can’t control gagging all the time. But when you’re not gagging, you’re smiling, and your smile turns this whole crappy, tiresome situation in to sunshine on a rainy day. I have so much love in my heart for you, as does everyone else. Why did God give me such sweet boys? I don’t know what I did to deserve either of you, but I don’t ask questions. I just continue to thank God every day that you’re mine.
Love you bub,