Grace Update

[Guest guest]

Hi Ya'll, Happy Holidays to each and every one of you! Thank you for being who you are and the support that we all need!

Grace went back into a cast this last Monday. She is tolerating it pretty well. It was a rough first day or 2, but she has pretty much settled back into her routine. We did move a bit too fast going home, so she got sick and puked all over herself and the back seat of the car on the way home. Wow, what a mess! I think I'll be taking things a bit slower next time. This was the first time they were going to be willing to let us go home without her peeing first and guess what? She pee'd just before we left (at 2pm). Go figure.

Numbers aren't looking so good. We thought the brace had been holding her curves the last 7 months, but in reality, she is almost back to where we started in Oct '09. This time she was about 35* out of cast and he was only able to get her down to about 20* in cast. She had been about 23* out of cast and 8* in cast when we moved to a brace for the summer. Dr. D is also seeing some more of her verts that appear to be wedging. They used to look "normal" but as she's growing, its becoming obvious that the growth plates aren't all as they should be. Unfortunately this was a risk of doing the hemi removal at such a young age. Well, not so much from doing the surgery, but not knowing what all would eventually need to be corrected. So we had the talk about rods and/or fusion being in our future. He said he is willing to cast Grace as long as she'll tolerate it. Depending on what age she decides to

stop, that will determine if she's old enough to go ahead and just do a fusion or if she's too young, we'll have to talk growth rods. I'm very torn. You'd think that if she were progressing we'd notice. I just have to say, her body has done an awesome job of compensating.

That said, we always knew this was the possibility. We just grasped at the "oh, we'll be able to fix it" and ran. At least we know as long as we cast her, she's at least not progressing, so that's positive.

Santa came to visit us at the hospital and while Grace was a little scared, she put on her brave face. Matter of fact, she didn't cry this entire casting day. She would turn to me after every thing she normally would cry about and say, "momma, I no cry no more, I a big girl!"

And last, but not least, a funny thing she said when I was getting her dressed to go home. She's been very infatuated with breasts lately and has inquired when she'll get some, lol, so she looked up at me and said, "Momma! I have cast boobs!"

Anyway, not exactly my great news week on the scoliosis front, but Heidi made my week when she pulled my name for those gorgeous diamond earrings in the contest on her blog...so, I've let that lift my spirits!

Have a safe and happy holiday!

Jane

Grace , 4 yrs old, moderate omphalocele fully repaired, congenital scoliosis (hemi-vert removed 9/09 followed by a series of casts, now in cast #5), non-neurogenic neurogenic bladder

Grant, 8 yrs old, ADHD, ODD