Tuesday, June 30, 2009

More words I can't pronounce.

Will this ever end? Wait...don't answer that!

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.


Holly said...

I'm sorry your feeling overwhelmed with the labels. But they are just that....labels. A way for the doctors, therapist, and insurance companies, etc. etc. to put Kendall in a tiny little box so that they know what to do with her.

You know her better than anyone with a large medical vocabulary. You know the true Kendall. The sweet smiles. The loving snuggles. The yogurt eating princess. Don't let anyone, no matter what their education level, take away the fact that she is your daughter. You know her.

Caleigh's exit NICU report, that we carry everywhere with us, is 13 pages long. After 6.5 months in the NICU and that report, I'm surprised she even made it out alive! But I know my daughter and I know that she is a miracle and not a list of medical terms.

Can you tell I hate labels....
Ok, jumping off the soap box :-)

Rhea said...

I read your blog and I wanted to thank you for sharing your life with others. I am a blessed Mom of six - not the plan, but they are awesome. My baby, well not a baby anymore is almost two. Her name is Anna and was born totally healthy, or at least we thought so. At five months old she began having weakness in her neck. She seemed to be OK after that, but at eight months old she began having seizures. I was shocked and couldn't believe that this was happening to us. Our twins Owen and Olivia were born at 31 weeks and Olivia was stricken with Necrotizing Entercolitis at nine days old. She spent 16 months straight in the hospital. They are 3 1/2 years old now and doing awesome. Back to Anna - we thought that she had Encephalitis when she started having seizures, but the Neuro doesn't think so anymore. So many questions - why is this happening to her and us. She is so behind in her development and even the GP said yesterday that she would not be fine. Oh was that hard on my heart. Why? I am thankful for my faith, but it's been so difficult. All I know is that I am going to fight for my daughter no matter what. I love your honesty and I think that you are an excellent Mom. I agree with Holly - don't worry about the labels, just love your Kendall, which you are already doing!!!

blogzilly said...

Yeah, there is nothing worse than a conversation or two with a doc, then getting the written reports and seeing all kinds of things on there that you never heard in the discussions.

Sometimes I think they don't use the words because they assume we won't be able to understand, but who knows?

Val said...

Multi-contabular-defiliration? (Squidbillies)

Don't sweat the small stuff, we love you guys!

Kendall is a sweetpea.

Anonymous said...

Thank goodness for the blogosphere - for being able to vent and receive support from others.

Wishing there was someone to take the time to explain all that to you - if you want. It really sounds worse when you don't understand.

You might feel differently on another day. I don't know what I would do in your circumstance but I have seen many parents search every nuance for accurate diagnosis to be sure the medical treatment was correct, too.

Kendall will continue to flourish under your loving care. Nuff said. Barbara

Cjengo said...

I am sorry girl and I so understand.