I just wanted to let you guys know that Alex is doing wonderful! He is feeling great. Pretty much back to himself...running and jumping and climbing on Mommy and Daddy. He is amazing. He has completely accepted his tube and likes to help me. My favorite quote is, " Mommy, I'm beeping". This morning he woke up to the beeping and said Mommy did I stop the flow again? So he gets it!
Thank you for all the support and prayers through the last few weeks. We know god was on our side through this whole experience and is visible in Alex everyday. Alex's spirit and joyful outlook are a reminder everyday of how blessed we are.
A lot of people have had questions about the tube and eosinophilic disorders in general. This is a really basic description:
Eosinophils are types of white blood cells. There job is to attack invaders or toxins in the body. They are normally found in VERY low numbers in the GI tract. When you have an eosinophilic disorder, your body sends eosinophils to attack certain foods. They then cause inflammation and pain in the GI tract. The trick is figuring out what foods cause this response. There is NO testing that can pinpoint the foods. For some kids only a few foods are problems. For other kids virtually all foods cause problems. We already know of about 25 foods Alex reacts to. We also know he has 4 safe foods. Whether he will ever gain any more foods, we don't know. It will just be a slow case of trial and error.
As for the tube... At this point we are considering the tube to be a lifelong necessity. If at some point he gains enough foods to support him nutritionally that will be a bonus.
Please do not feel sorry for Alex or Bruce and I. We are very aware of the fact that there are so many disorders that would be so much harder to deal with. We are blessed to be living in a country and a time when there are treatments and ways to keep Alex growing and thriving. They are continually doing research to try and find better treatments and even possibly a cure. We are blessed with a happy, smart, loving little boy who we wouldn't trade for the world.
We love you.