A little while ago, I received the forms via fax from our nurse for my Family Medical Leave Act paperwork. (again, that's a whole other issue...which I've deemed inappropriate material for my blog) Just when I thought I had Kendall's diagnosis understood and all the terminology, I read this:
"Patient has a history of reftactory asymmetric tonic seizures, history of birth congenital cataracts, neuroimaging showing a right porencephalic cyst, a left sided colpocephaly and multiple subcortical areas of cystic encephalomalcial and a history of Factor V Leiden Mutation."
Huh? I thought we had Infantile Spasms and Cerebral Palsy? Now I'm confused again. I'm sick of adding to the list. I've never heard about cysts all over her brain...and if we just have tonic seizures why are we on Vigabatrin? Are tonic seizures different from IS? ugh. It didn't say anything about the hypssarythmias...or modified hypps.
Anyway, my palms still sweat when I read anything with the Cooks logo on top. The other day we received the geneticist report. The last paragraph read:
"COUNSELING: I reviewed with Kendall's parents that it appears that her brain problems are related to the bleed that she had in the head which is probably secondary to her factor V Leiden abnormality, however, this does not usually cause cataracts. Kendall's parents have seen another ophthalmologist for 2nd opinion who concurred with the treatment and findings seen by her original ophthalmologist. Now that Kendall's mother is on aspirin, her risks for having a thrombosis has decreased. We did briefly discuss possible pregnancy in the future. Kendall's mother does not wish to go through treatment with heparin during the pregnancy, and thus, at the present time is not planning any further children. I still feel that there is a possibly another problem that we have not determined which has caused the cataracts."
UGH! I'm sick of this. This is like a to be continued line at the end of a horror movie. I'm done. Done with Dr.'s and what ifs. I refuse to live my life worried about what else Kendall has that hasn't been discovered yet. There isn't enough room on the paperwork at the Dr.'s office, therapy centers, insurance forms, etc. Its too much. So I'm over it.
The therapist this morning told my mom we need to order the splints for her little fisted hands. They've gotten worse. I'm a little bummed about that.
I did call the Medical Supply Company this morning again to harass them about Kendall's special needs stroller. My persistence paid off! We're getting the chair Thursday morning at 8:00! I'm super excited.
Positives, focus on the positives. Focus on the positives. Focus on the positives. Focus on the positives.