Here's What We Know So Far...

Results are all in. They ruled out a bunch and told us not much at all. Except what he doesn't have. Of course.

--From the hematologist's mouth: our guy does not seem to have problems producing neutrophils, but he does have problems getting them from the marrow into his blood. I've been told by other parents who have children struggling with neutropenia that this doesn't mean much yet; their kiddos have had perfectly good bone marrow biopsies and still have a bone marrow failure syndrome (docs catch the issue in a later bone marrow biopsy - and yes, there will be more in C's future because neutropenia can potentially develop into Leukemia, which is essentially what the doc is telling us at this point C does not have). The only other thing: slightly low hemoglobin. Low enough to be flagged consistently low, but not low enough to be concerned.

--All of the chromosome tests have come back normal.

--His fecal fat test came back normal, but our follow up appt. is on Sept 23, so we haven't yet spoken to the GI doc about that one. I have so many questions to ask...for example, if C is on Neocate-only diet, where he doesn't have to break any proteins down, would that affect a fecal fat test? Also, if there is no evidence of fat buildup in the stool, will there be any more tests? Or should we just try to feed him certain foods? And if so, what? 

--His skin biopsy indicates an auto-immune response. From what I understand, this basically means he does not present with typical "eczema" which is usually attributed to allergies or sensitive skin. Instead, his body attacks his skin when he's sick or struggling. (Hmmm... wonder if H's skin problem is the same?)

I think this is what we've got so far. So not much, but then again, much more than we started with... I guess ruling things out is good too.

Oh, and it's official: C's Neurologist diagnosed him with a neuro-disorder, although he is not ready to ascribe the "A" diagnosis. Instead, he diagnosed C with PDD (Pervasive Development Disorder), the umbrella that Autism falls under, which some people argue is not much of a diagnosis. I had a hard time with it at first, but this diagnosis is important because it may get him more therapy services and help. It doesn't change who he is, it doesn't cause us to give up on him or reduce him to a label - on the contrary, it offers hope, assistance with getting him on the right track, more resources.

Because at the end of the day, C is a beautiful boy. He loves his family and he is happy.

Regardless of where he may measure up in the pediatric world-at-large, he's living his life with a cheerful spirit and he's inspiring us every day. I know there may be obstacles ahead, life won't always be easy (it never is, right?), and we may deal with things we don't know about yet. But we're relieved and thankful that he's doing better, that he's staying healthy, that he's smiling!

Even those darn shots don't seem so bad anymore.

Have a beautiful day.