taking good steps!
we're making really good progress. therapy nowadays consists of about half an hour of work getting from his knees to a standing position, or maybe stretching or sitting...and a half an hour of walking down the hallways at st. joe's. he's taking some really really pretty steps--things that he wasnt doing prior to the surgery. now that the spasticity is almost completely gone we're realizing a couple of things 1) his right leg is a more affected than his left (which is weird because his left arm is more affected than his right) and 2) his quads are still trying to get strong enough to walk consistently. our PT said the other day that she could feel his muscles trying to get moving and trying to figure out how to fire to make the leg move--it's a somewhat new sensation for him. lefty is doing really well...with almost flawless heel toe steps. righty lags a little bit, but we're slowly but surely getting there.
sleeping!
oddly enough the surgery has resulted in him sleeping a little better. prior to SDR we maybe got 1 full night of sleep a week. normally he'd wake up 1-2 times a night. but lately we're getting at least 2-3 nights where he sleeps fully through which is great for us. we're realizing that his spasticity might have come with some pain...i mean his muscles/hamstrings everything were so tight...it had to be uncomfortable. seems like getting rid of that has put him in a more comfortable space.
funny story: so last week was a particularly bad week sleeping wise. no idea why...we were just up at 12:15 every night for about an hour and a half. d and i were zombies by the end of the week. finally on thursday he actually slept through.....................which would have been great except the older one woke up at like 1 and asked if he could climb into bed, and then at 3 the youngest (who sleeps like a damn champ) decided that she was feeling snacky and wanted a bottle. so yeah. dommy slept well but the other two raised his flag in his absence to make sure that mom and dad got no sleep. starting to think it's a criminal conspiracy.
what's next!
well now that we've conquered SDR D and i have made another realization. speech has been really frustrating for us...dommy had words at 18 months and then just lost them. speech therapy is really frustrating for everyone. we made great gains doing feeding therapy but we feel like we're not getting anywhere with speech right now.
so we decided to do some digging and we feel pretty confident that dom has apraxia of speech. my understanding of that is that he's smart enough to know the value of words and what words are, but just cant quite figure out how to make his mouth make the words. like we just cant quite get the muscle movement down.
all of this was a total lightbulb aha moment for us...i mean we had to teach him how to eat solids from the ground up...tongue movement, chewing, etc. we had to teach him how to move his mouth. makes sense that we'd have to do the same for speech.
so on one hand it's a bit overwhelming to have another diagnosis on our hands, on the other we FINALLY have a name for what's been frustrating us. apraxia comes with its own set of therapy techniques and things to try...which is really really good news. we're ready to attack this one to get it figured out.
feelings!
there's a weird dichotomy for us...the more dom does the more impatient we get for him to do more. if for some reason we knew he wouldnt or couldnt walk, then we would be perfectly content...but now that he's walking well in his gait trainer and showing that he has much less spasticity in his lower extremeties...we just kind of want him to be doing more. we're so ready for him to walk because we know he's capable of it. we've got one more procedure in st. louis coming up in july to lengthen his heel cord and his hamstrings...and we're ready for that to happen ASAP. hard to be patient when you know exactly what you want. maybe that's a good thing. maybe being too patient would result in complacency. either way it's something that we kind of struggle with....knowing that we're making good progress, seeing that we have a decent ways to go, and just wanting to work as hard as we can to get there.
we've settled in pretty well to the 5 therapies a week schedule...and i think Dom has found his groove too in what to expect as far as his daily routine goes.
so far so good friends. we're trending in the right direction.
