Keandre loves this rabbit statue at the Children's Hospital.
I love this picture of their silhouette. :)
I admit it. This has been hard. Our son is hurting. He may hide it well sometimes, but he is not okay. And it is impossible to settle for that.
I am doing research like there is no tomorrow, and skipping sleep in order to do so. Keandre has both EE and EGE (both are types of EGIDs). EE is rare, but is the most commonly diagnosed of the several types of EGIDs. EGE is even more rare.
Keandre's GI doctor treats this disease on occasion, but it is not his specialty. And since we're not traveling out-of-state to a clinic that specializes in the treatment of EE and EGE, I can't assume his doctor is up-to-date on the more recent treatment plans. That means I have to research and advocate for the treatment we hope to use, then approach his doctor for input and hopefully approval to proceed.
Today I met with Keandre's GI nurse. I had a whole sheet of questions for her! Now, after an awful weekend where I was seriously stressed over all of this, I finally feel more confident that we're going in the right direction, even if it may not be the approach that ultimately heals Keandre.
We are trying a more natural approach right now, and I'll admit it is not working very well so far. But we will feel much more comfortable approaching the use of heavy steroids and an elemental formula diet after we know we've tried the alternatives first. It is a big deal to go no-food for a couple months. It is an even bigger deal having a g-tube for feedings. We don't want to skip ahead to that point if we don't have to.