
Clay's 'super exciting medical drama' continues on, and I feel like we're following the yellow brick road, finding new and interesting things along the way and hopefully we'll reach the wizard within the year.
A bit of good news, NO a bit of GREAT news: Clay does NOT HAVE CELIAC DISEASE!
I can't tell y'all how relieved I am, Not only does he just not have some yucky small intestine disease, but I can feed him macaroni and corn dogs again GUILT FREE!
We saw the pediatric surgeon at UCLA and followed up with his pediatric GI specialist last week. The surgeon was very nice and informative and open to questions. He explained that Clay's
gallbladder situation was very rare, especially for his age, and that he was surprised no one had looked into WHY he was getting these huge gallstones. He explained that several of his symptoms (calcified gallstones - which apparently are different than regular ones, it alludes to the fact that they're composed of a different substance entirely), constant anemia, and having a hard time getting over jaundice as a baby points us in a direction of a hematologic disorder. (That's a blood disorder y'all.)
He's not certain that clay has one, but he ordered some blood work to investigate since his symptoms are similar.
One in particular, spherocytosis, was his main focus and hopefully the blood tests will be back within about 2 weeks and tell us he does not in fact have this. (What is is with hematology/pathology taking two weeks for everything!?)
Spherocytosis is a genetic disorder where the red blood cells get all misshapen by the spleen and cause all sorts of issues. I think I'll save the brief for after we know whether he has it or not. Until then, you can get a brief synopsis
here. It's a little frightening at some parts and might warrant some removal of MORE organs, blood transfusions, and sepsis complications....so right now, we're just going to assume the best (until told other wise) and plan on Clay's gallbladder surgery in May. (UCLA has yet to call and schedule that) We're waiting until May so we can have the blood results back and change our surgery plan accordingly.
On a much, much brighter note, after the GI doc did some more tinkering with his meds, Clay has been TALKING! He still lacks several vowel sounds, but he is saying words! He is saying lots of them, and the ones he can't pronounce correctly, he is still trying to say them anyway! Woo hoo, awesome.