Here's a video of our first OT session after botox, she is willingly using lefty arm so much more than we had ever seen before and was much more accurate!
Her leg was casted after botox as well, just for 1 week. Thankfully, that's the only casting she needed to stretch her muscles out rather than doing serial castin. Her PT was really pleased with her range of motion once we took the cast off so I would say that the amount of botox to each area of the leg was good too. Nightly stretches have become less of a fight and more plesant as well :-)
While we were getting the botox done the rehab docs mentioned wanting to do some phenol so that they would have more botox to use in other places. One being her pectoral muscles (chest) to help her left arm reach out easier, I had never thought of that one. In any case we declined the phenol b/c it was mentioned the day of and I was not able to read about it beforehand. From what I do know it is much more painful afterwards and I don't think Jim and I were mentally prepared for that, plus we left 2 days later for Vegas and left Annabelle with his mom. We didn't want Annabelle to be extra cranky for her while we were away!
Another thing that was mentioned by both the rehab docs and PT was a Selective Dorsal Rhizotomy (SDR). Her PT, who I trust very much, is encouraged by how strong Annabelle is "underneath" the spasticity. It sounds pretty intense to me, it is essentially going into the kiddo's spinal cord and cutting some of the sensory nerves coming off the spinal cord. The patient then needs to lay flat on their back for 2 days and is followed by 10-14 days of intensive inpatient rehab. Most people struggle to walk at first and there is a large amount of weakness since it is the first time the spastic muscles are no longer taking control of everything.... Like I said, pretty intense. From what I read there are definate benefits, everything from improved lower extremity use as well as upper extremity use to improved cognition (presumably due to not needing to concentrate quite as much on the lower extremity muscles) and less ortho procedures.
There is no way Annabelle would tolerate that at this point, only being 2.5yrs old and barely tolerating an hour of therapy here and there let alone 2 sessions a day. I think part of the reason it's being brought up so much is "THE guy" we would want to do the procedure is retiring in the next year or so. We have a bit of discussing and researching to do...
