Medical update

We had our second meeting with the physiatrist on Tuesday. I was dreading it because the first time we met him, I found him to be pretty arrogant and unapproachable. This time, he was much more easygoing and I felt more confident about our ability to work together to get Hannah what she needs. He did have a 4th year med student with him, so maybe he was on good behavior, who knows?!

We talked about a lot of things: Hannah's adjustment to her new walker and AFOs (really good), her range of motion (good), her hip X-rays (fine right now). I brought up some concerns: she is doing a lot of in-toeing on her left side and she is swaying to the side in her new walker because it's wider than the old one. I wanted to explore hippotherapy (therapeutic horsebackriding) and also whether or not we can up our PT hours for awhile since Hannah has a lot going on with her new equipment and it would be helpful to have some more tricks and skills to adjust to.

Some of the take aways:

• We're going to get authorization for hippotherapy which will be covered by Medicaid: horray! We just have to wait for a spot to open up and we hope that we can do it on Saturdays so that one of us can take Hannah and the other can take Isabelle for some special kind of one-on-one adventure.
• We're going to get pelvic supports for her walker to keep her hips from swaying out so much. We're also going to get swivel limiters so that she can learn to turn without just going around in circles.
• She is a good candidate for a botax injection in her left calf. This should help her get her foot flat on the floor and stop the in-toeing. I'm a little surprised we're there already but I have noticed her struggling more and more with her gait and if this can help then I think it's. I do want to do some research first because there's been some discussion about doing serial casting as an alternative to botox for managing spasticity in kids with CP.

• The doc also mentioned selective dorsal rhizotomy, a neurosurgical procedure done on kids with CP that can permanently reduce muscle spasticity. They've been doing this surgery since the late 1980s and with some really good success. It's not something we would do right now, but in the next few years (between 4-5 years old). It's pretty major surgery and it's a lot to digest. The good news is that he thinks Hannah is a good candidate because she has so much potential to gain from the procedure. He's not suggesting it because it is a last resort; rather, it's an option available to her that could permanently and dramatically improve her overall muscle function. But I still need to get my arms around it which is why I'm glad he mentioned it now, when we are in no rush to make a decision. We're going for a consult at Dartmouth Children's Hospital at the end of July and may try to set up a meeting with the pediatric neurology team while we're there, to learn more about the procedure.

So we have our homework cut out for us. We have a lot of research and thinking to do. I am realizing more and more that parenting a child with cerebral palsy is a lifetime process. There will always be new challenges to work through and figure out. Therapies, surgeries, medical equipment, integration into the community, development of a positive sense of self...so many layers of Hannah's and our lives are impacted by CP and always will be.