I try- I really do, but I'm just busy and then when I do have a free second to blog, I use it for sleep.
The girls had Rehab Clinic appointments on Thursday. From that appointment, Anna has an appointment with the Spastisity Clinic April 5th to discuss/see if she would be a good candidate for SDR Surgery. The whole prospect of that scares me SOOO much, but I can also see it helping her so much. We'll just have to see how it goes. If you want to read more about the surgery, you can find the link to St. Louis Children's Hospital here. She will also be getting new DAFO's (leg braces) and will be fitted for a pair of Benik shorts which can be found here.
Ayva has been having a lot of clonus lately so she will be starting a new medicine called Baclofne (I don't think I spelled that right) She is only on a small dose right now and it will increase next week. So far she hasn't had very many shaky-leg episodes that are unprovoked, like she usually does--so that's good. She will also be fitted for a hand splint for her right hand. She keeps that hand fisted most of the time and the muscles are becoming too tight. OH, and I feel so terrible about this, but BOTH of Ayva's hips were out of place when we got there! I had no idea! She hasn't cried or acted like they hurt in any way! So she popped them back in (easily) and she and Anna both got hip x-rays before we left. Ayva will see the Orthopedic surgeon on April 16th to see if they want to do anything for her hips.
So....it was pretty information filled, but I think I got some good news out of it all. I'm hoping these next few appointments will give us more hope and more answers!