Botax benies

Hannah had her latest round of botax at the end of July.  It seems to take about 2-3 weeks to hit its full potential with her and then she often gets weak and unmotivated for a little bit while she adjusts to the new way her body feels with the reduced spasticity.  And then she's starts the steady climb up to the sweet spot where she's feeling loose and strong and energized to do things she would not be as inclined to try otherwise.

We had a rough go this round when Hannah hit her "low" and we think she might also have hit a growth spurt right around the same time.  She did not want to move her body much at all and when she gets like that, it's so hard not to feel defeated by her limitations.  So when she started to get her energy back, it was like the sun finally came out after a long stretch of rain.  She's been on fire! And suddenly I feel like the world is her oyster again, and there's no limit to what she will do. (well, there are limits, but still...)

It continues to fascinate and amaze me, how these site-specific botax injections into the muscles in her legs can totally change the way Hannah's whole body moves and feels.  I'm projecting on the feeling part because obviously I have NO IDEA how it feels for her, but from what I can see in how she moves, what she can do with her body, and her behavior, I'm guessing it's a pretty significant improvement.  There are so many little things she can do post-botax, like shifting her feet into a better position when tailor-sitting, or sustaining a long-sit for a longer period of time, or opening her legs wide to make "snow angels" when we do our stretches at night.

I'm assuming that if we do SDR, she will see similar gains and the best part is, they will be sustained and will not wear off after a few months.  The other benefit I think she'll see, which has me pretty excited about SDR, is the improved energy efficiency she will gain so she'll have better endurance to move her body around.  Currently, Hannah weighs only about 25 lbs and she'll be 5 in a few weeks and this is because she uses so much energy to do the things that other people do with little to no effort.  Even if she's super motivated to walk, she sometimes peters out before she's really ready to stop, and this is frustrating for her and for us.  It would be incredible if she could keep increasing her endurance and not get defeated by her lack of it.

However, one thing I've noticed more with this latest round is trunk weakness: Hannah has been complaining more about getting tired when sitting than I recall her saying in the past.  I'm not sure if this is because of the botax or if something else is going on but it does worry me a bit when we think about SDR. 

We will be having another SDR consult with a different surgeon/hospital in October so this will definitely be on my list of things to ask about.  In the meantime, we're going to ride this post-botax wave for all its worth!