Wednesday, November 30, 2011

Got a hankerin' for a Philly Steak & Cheese?

Me too! It's almost time to head back to Philly! What the #$%@? How did that happen? What a year we've had! CeCe just marked her first birthday last week and what a blessed event it many of those that have looked after her (& us) all together in one place to celebrate this sweet baby girl. Thank you to all of you there both in body and spirit...we would not be here today with such a great outlook without the constant care of all of you!

Moving on...I've started taking a better view on her last report (MRI and ENT) and now we are ready to kick some CHOP butt coming up!

CeCe's PT looked up the testing protocol that they will be using to measure her mental and developmental progress (Bayley Scales of Infant Development)and she can rock them all but one! It's going to be a strange testing period in that we are in the room with her but not allowed to encourage her...she has to be able to do everything on her own...what kid does that? And they also won't take into consideration any parent, we can't just say "she does that all the time"...if they don't see it, she can't do their philosophy....whatever...we know the truth, right?!?

She is also going to have her annual Urodynamics testing which will test her bladder pressures and make sure she is voiding completely. This is such a common issues for sb kids but she's been doing really well all year without a single UTI and perfect ultrasounds of her kidneys. Brian and I have both been praying on this one the most and humbly ask you to do the same.

They will also being covering her back closure scar so that the researchers don't have any bias as to whether she had fetal or post natal surgery and we are not allowed to say ANYTHING that might lead them to think one way or another. As a sidenote, the study recently got a grant to EXTEND the follow-up. So in additon to our return here soon, and at 30 months...we will also be returning sometime between ages 5-7...that's GREAT! The more research, the better!

I'll update when I can from Philly!

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