Well, we are home from the clinic. We stayed at the Ronald McDonald house, and that was such a humbling experience. Seeing all the pictures of the children that stayed in the home, and then seeing the sick children walking around the Primary Children's Hospital...it was hard to keep my emotions in check. Especially since I've got a friend who's young daughter passed away from Leukemia almost a year ago. Lots of choking back I had to do. Anyways...
Here's what gonna happen:
Grace is getting an MRI in December to update on her scoliosis and syrinx in her spine. At the clinic she got a renal ultrasound on her kidneys and they looked perfect.
Grace will also be getting a pressure test on her bladder with dye input to make sure she doesn't have neurogenic bladder as well. This will also show if the kidneys are being damaged, which we didn't see so probably not.
Grace will be getting SMO's... Here's a picture below... Since she can't stand without support, and she walks with her feet pointing out, and has a slight roll to her feet (this is all normal with spina bifida AS WELL AS her gene deletion), the SMO's will help stabilize her ankles, give support, and teach her how to balance better so hopefully she can stand without support.

Today we talked with Neurosurgery, Neurology, Urology, PT, OT, Genetics, and...I think that's it. PT said she's doing great, and that children like Grace would put PT out of business!! He was just so ecstatic with how well she's doing. OT has given us a list of supplies to buy since she's so far behind developmentally...darn...no colors, animals, or writing other than vertical lines and scribbling. Here's whats on our wish list for her:

The chenille stems. These we will use to work on stringing beads. The beads are below.. These are what we start with because they are more firm than just a piece of string.

Since Grace is SO sensory tactile, the OT said to do AS MUCH sensory AS POSSIBLE. Shaving cream, whipped cream, finger paint, pudding, jello, etc. Allow her that as much as she wants to do in hopes that it will decrease her need to smear her meals all over her.

Chunky puzzles. Aren't as difficult to maneuver as the puzzles we have for her with the tiny handles, and they are simple shapes. We are to only use circle, square and triangle, and then move on when she's mastered that.

These are the Melissa and Doug beads we have to start her stringing with the chenille stems. This will help with hand eye coordination, fine motor, and it's a common milestone she should have already reached.

Stacking is HUGE all throughout this age and children are tested up to the age of 5 on stacking. And since she just HATES having things stacked in front of her, these were given as an activity to buy since they connect as they are stacked, so that they won't fall off as easily if she were to push them over. Also, we are to teach her that if she wants to knock them down, then she has to push a truck into them. Gives her following direction ability, hand eye again, and hopefully will make her less likely to knock them down.

Another chunky puzzle without knobs. This one is a bit more advanced, but it's another one we could get to help her with holding larger objects in her hands.
All in all, a trip completed. I'm exhausted, so we've put Grace to bed and am watching hulu till we get too tired to keep our eyes open! The house offer we counter offered after they counter offered us went through, so we go to Rexburg tomorrow to do the walk-through with the inspector, then hopefully by the middle of next week it will close, and we'll move in by next Weekend!!
Amanda