Last Friday, my mom and I took James to the Spina Bifida clinic at UCSF. The trip was a total success, from a smooth driving experience (thanks to the Reids' GPS system that we borrowed.. and simply the grace of God) to a wonderful experience with all of the amazing doctors and therapists at clinic. We love this clinic! Not only did we get a second opinion on what to do (or not do) about the cyst in his spine, but we had a lengthly discussion with a physical therapist who specialzes in working with children with Spina Bifida, and James had an evaluation by a developmentalist. All of these services are not available to us at Shriners in Sacramento.
The neurosurgeon looked at the MRI showing the cyst, and although he admited that it does look quite large, he doesn't recommend surgery at this time. This is also the stance that James' neurosurgeon in Sacramento takes, as well as his doctor at Shriners, so they all agree. They say that we need to wait and see whether it will cause any loss of function in his legs or with is bladder control, or whether it starts causing scoliosis, etc. Seems a little odd to me, but if they all agree, what can I say? And it does make me feel better that they all take the same stance.
Monica, the physical therapist was amazing. She put James in his AFOs and then in his brace (RGO) and watched what he could do in both. They never put him in his braces at Shriners, so I was really pleased to see them take the time with James at UCSF... She said that the RGO did seem like a little too much bracing for James because he has function of several of the muscles that are needed for walking without so much support. She said that we should have parts of the brace taken off as he shows that he is able to walk without them. When we came home, I told the therapist in Chico what she had said, so we tried the walker with just the AFOs and he did really good! He still needs A LOT of help, but he's getting there!
The developmentalist recommended that we continue speech therapy, which is not really what I wanted to hear because it is the least of my concerns for James right now, and it's another appointment each week... so, I'll just have to think about that.... but, she did say that they would be willing to help with the transition to preschool, and even with my request for an interdistrict transfer so that James can go to school in Chico where he sees his physical and occupational therapists.. so that was encouraging!
So, needless to say, we like the UCSF clinic better than Shriners, and we have finally made a decision to go ahead and switch him to UCSF for all of his future care. We will keep his neurosurgeon in Sacramento, Dr. Ciricillo, as his primary neurosurgeon, and we will finish up with Shriners on some of the issues that I started with them a few months ago.. like ordering a wheel chair for James to start preschool with, and getting him on a bowel program so that he's not poopy all day when he starts preschool either... and so that he quits pooping in the bathtub! hahaha.
Oh, one more thing.. we had a great view, from our 5th floor hotel window, of the 5,000 person gay pride march that happened in response to the passing of prop 8 here in California. It included at least one sequins wearing, blonde afro wig sporting cross-dresser. Wow. It was a San Francisco experience if I've ever seen one. We had had plans to go out for dinner with Lyndsey and Ryan (who were also staying in SF at the same hotel to celebrate Lyndsey birthday), but we decided to wait in our room until the march was over! Then we went to Chevys, and all was well :)
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