Grace's journey

Meeting with Spina Bifida Clinic

We've been waiting for this day for a long time...forever really. For 6 months anyways. And that seems like forever to me. And if you all don't remember, Grace does not have spina bifida. But because she's got so many issues that are similar to spina bifida, we are able to go to this clinic. So I got a call from the doctor at the clinic to do a follow up on Grace before we came to see them on Friday, asked some questions, and he described what and who we will be doing/seeing there. It's a three hour appointment...yikes...Grace is going to be one fussy girl! (She'll probably do fine) So we are going to be in a room down a long corridor, and the doctors just come to see us one at a time, examine Grace, ask or answer any of our questions, and write up a report about what they think Grace needs, doesn't need, outlook for future, etc. Then the doctor I talked to on the phone will write up the FINAL report (from everything else the other doc's say) and will mail it to me. Some of the doctors Grace will be seeing:

Neurosurgeon
Neurologist
Orthopedic Surgeon
Physical Therapist
Occupational Therapist
Urologist
Physical Medicine Doctor
Nutritionist
Speech Therapist
Spina Bifida Doctor

So that's who we know for sure will be there, but other times there are others that could "pop in" that want to see Grace too. I'm pretty excited/nervous about this appointment. There's going to be a lot of information given to us, and I don't know if I'm going to remember it all. I'm thinking about taking a recorder so I can have something to play back when I'm writing all my information down, or a video camera to record. Oh, and then the last part is that once all the people have examined her and met with us, we all get together in a room and discuss the next steps for Grace.

The only other news about Grace is that she's going to get another MRI to check the condition of her spine, and they were hoping to have that done before the Friday appointment but I guess Roseville is backed up because they haven't called. So that might not happen for two weeks, but I'm going to try to push it for sometime this coming week.

That's pretty much it. I guess I'll just twiddle my thumbs till Friday!

Amanda