Tuesday, November 30, 2010

The results are in...sort of.

CeCe had a good night after the sedation from last night's MRI wore off. They decided not to repeat her head ultrasound afterall as the MRI is a better diagnostic test...so that explains why the "no call no show" event yesterday.

The orthopedist came by early this morning an evaluted her for things like scoliosis (sp?) and some other things I can't pronounce. She passed all his tests and he mentioned that she has symmetry with both her hips and looks to him to have an L5 functional level, rather then the S1-S2 level the neurosurgeon suggested...what does all that mean? Nothing really...she is who she is and no matter what level they place on her...I'm not going to let her become a self-fulfilling prophecy. She will do and be what she was meant to do and be...their comments are merely textbook projections and suggestions...not fact.

On a side note, the MOMS study team asked me to meet with a candidate they had here in Philly who had just found out (like we did ) at their 20 week ultrasound that their baby has SB. OF COURSE they can come talk to me! It made SUCH a huge difference to me to actully see a baby and meet her family back in August when we were trying to make our decision. In case I haven't mentioned (and I know I have) this was absolutely the right choice for us. Through all the frustrations and communications, we know CeCe is with the best! Just ask them...they'll tell you! :)

Then FINALLY I got to meet with the neo-natalogist for the MRI results...and Ta-Da...most everything she mentioned we already knew from all the in vitro ultrasounds. Here's the low-down:

Her ventricles are still enlarged.

She still has a Chiari Malformation (Cerebellum is being pulled down...very typical with SB kids).

She has what's called a Syrinx-a small pool of Cerebral Spinal Fluid INSIDE her spinal cord.

I learned that even though her head circumference is expanding, that's not neccessarily a bad thing...think about how she would look as an adult with a tiny little peanut head! We just have to watch HOW FAST it's growing...she's doing just fine although she has a little more fluid in her fontanelle now.

So your next questions has to be...what does all this mean? How will this effect her in the future? The answer: NO ONE KNOWS....SB is a tricky liitle business....just because she has this or that...a level described as here or there...everything is just a wait and see. I beleive God has finally found a way to teach me patience...interesting concept, but He's got it all under control.

1 comment:

  1. Sounds like you got a bunch of info. And a great attitude about what level they think she will function at (and it is all still a guess). It doesn't matter what they write on a peice of paper, she will do what she will do!
    I love that they contacted you about another family. I've offered to talk to other families as well. I hope I get the chance.
    Keep up the good work CeCe and hopefully she won't need a shunt and can come home with you guys soon!