In Which Connor Has A Busy Time And Does A Lot Of Standing

The day started off pretty slow for Connor, but his afternoon was really busy.  After his nap we drove over to one of the local hospitals to get the little guy's stander adjusted and to talk about his adaptive equipment.  Connor has some muscular and skeletal issues that are slowly starting to become more of a problem as he gets older.  Despite his school therapy and the exercises we do with him at home, his scoliosis continues to progress and his hamstrings are starting to tighten up, making it difficult for him to stand upright. 

So we want to modify his chair, stander and at-home seating to help stretch him out as much as we can.  We worked on his stander today, and on Friday we'll return to work on more of his equipment.  We'll also be looking at fitting him for another back brace some time in the near future.  A brace won't reverse his scoliosis, but it can slow down the progression of the spinal curve.  Connor will probably eventually have to have surgery for his scoliosis, but we want to delay it as long as possible-- ideally until he's stopped growing. 

So when we got home I put him in his newly modified and extended stander (he's gotten a lot taller!) and he watched two whole episodes of Fraggle Rock without fussing at all!  All in all he spent just over an hour in it today, which is pretty fantastic.  We've been keeping the stander mostly at school since he has other equipment at home, but since he's pretty much outgrown those things I think we'll need to start hauling it back and forth again.  It's a hassle, but until we have other adaptive equipment to help stretch out his hamstrings and his back it's the best way to do that passively.  Then we can focus on other things instead of having to spend all our time trying to stretch him out. 

After his stander work he and I changed into our bathing suits and I ran a nice warm bath for him.  We've been working on floating in the tub, and he's starting to get the hang of it.  He's not panicking any more when I lay him on his back, and he's okay with letting his body just float as long as I'm supporting his head and neck.  He's gotten to where he really enjoys bath time at home (as long as we get in after the water is done running-- he's terrified of the faucet) but it's still some major sensory work for him.  All the echoes and splashing definitely make it less than a relaxing experience for him, but he's gotten a lot better at tolerating everything.  I'm actually able to use a cup to pour water over his hair now without him completely freaking out now!  Trust me when I say that's a big step forward for him.

So between the appointment, the standing and the bath all that hard work got to the little guy; he was so tired he fell asleep in the middle of his bedtime story and Jer had to carry him over his shoulder to bed.  I think that if it's going to tire him out so much that he actually sleeps at night, more time in his stander at home is definitely in the cards. 

He's getting so big!

~Jess