Wednesday, January 28, 2009

Kate Update: Day 648

  1  SELECT 
TRUNC( SYSDATE - TO_DATE( '04/21/2007', 'MM/DD/YYYY' ) ) kate_counter
2* FROM DUAL
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KATE_COUNTER
------------
648
Kris posted this on Facebook here, but just in case you can't access it I'm reproducing the note in full here:
well, as part of the new year, we (kate + me) began with follow-ups w/ her genetics DR. and neurologist.

we had a report sent from the radiologist that read "normal", for kate's MRI back in october. today her neurologist saw her and i brought the scans...we reviewed them together and while it does state "normal", it appears that the "GYRI" or the "wavy" parts of the brain structure are normal, but, they are not as "full" or "filled out" as a perfectly normal brain...it is still considered within normal parameters, but still smaller...her head is of normal size though...anyway, he feels this could be playing a part in her speech and motor delay issues...it is most probably caused by a lack of oxygenation at some point...

he explained that childrens' brains do recover and grow, but there is still this, for lack of a better word, immaturity in the fullness of the brain...her ventricles were also mildly enlarged, but within normal range...he showed me a scan of a "normally full" brain scan, and kate's is ever so slightly less full.

i wish i had a picture to show you, but pretend you dissect a cranium by lifting the top off and looking down, well, the brain doesn't entirely fill the skull....mind you, ever so slightly.

anyway, my heart kinda sank, but he was very impressed in her abilities to understand and comprehend complex tasks...she "acts" like a "normal" child by following directions...he wants to repeat a scan in october of this year to follow up on the growth...so yes, there is a very slight hint of brain damage, but one can not say for sure when this occurred...my best guess is 2.5 years of literally struggling to breathe...she can catch up, as kids brains are able to repair themselves, but it is a small hint as to what is going on...

secondly, her geneticist, is running a test for a disorder that does not allow a body to process cholesterol...( a key ingredient in brain growth), anyway, one of the hallmarks is small stature, and delays, but most prominently, syndactyly, most specifically, a mild syndactyly of the 2nd and 3rd toes...we will have results in about 3 weeks, as it has been sent to the Mayo Clinic...it is called Smith-Lemli-Optiz syndrome...it is rare and there are VERY severe forms, as well as very mild, barely perceptible forms....so, if you "google" it, don't fall out of your chair!

i guess i can't give up until i get the answers...deep inside of me i know there is something going on...i have always had a sense, even before she was born. anyway, there is the update...i know we will get this all figured out. BTW, i have taken up riding my bike to relax during the day when they are at school, unfortunately today, i can't get out to blow off some steam!

update
When I got home I was able to talk to Kris. The short of it, Kate has brain damage. Now, it's minimal as pointed out by the fact that the Radiologist didn't pick up it, but the Neurologist saw it right away. After seeing the MRI myself, you can see a small amount of space between her brain and her skull. Apparently that's indicative of brain damage.

What does that mean? Nothing really. We sort of knew all along. For both of us (her hearing, me reading) it hit pretty hard. I can't remember that last time I felt that way...and I can't explain why. Nothing has changed. We'll still love Kate, we'll still work with her (well, Kris will, I get to play!), she's just going to be slower than everyone else.

Which conveniently brings me to the theory I have about Kate.

Kate is a glimpse of the evolution of the human race. Her lifespan is double, perhaps triple that of you or I. The only downside is that development is slower (like a fine wine right?), which means she won't leave home until she's about 40. As a colleague pointed out though, that's not so unusual these days. ;)

5 comments:

Kris said...

thanks love

cdman83 said...

The only thing I can say is: I'm very sympathetic. As someone who has several similar cases in the extended family, I can say only two things:

- take it one day at a time. don't worry too much about the long term, because it will drive you crazy

- remember that (even if we usually think so in our arrogance) happiness is not a function of brain development. Everybody can be happy.

Best regards.

Valerie H. said...

Hey You wonderful people, just a thought for you. They told my Mother I was retarded when my EEG/brain scans and other testing revealed that I have significant brain damage caused by "lack of oxenization" during a prolonged delivery and extreme use of forceps. Your angel face Kate is WAY more intelligent than anyone can guess. I saw it in those eyes a long time ago, and I believe in KATE!

Valerie H. said...

Sorry, the brain damage does cause spelling errors sometimes, or was that just "lack of proof reading"?????

oraclenerd said...

Thanks cdman83!

Valerie,

I about spit up when I read that. Hilarious!