Tuesday, August 25, 2015

slow and steady wins the race

I've been wanting to take a moment to update you on Shea's recovery lately.  We are still being patient and reminding ourselves that cord compression healing can be slow and take months...but he is still making progress!  Almost every week we see one or two new struggles conquered that he could not a do few days prior.

His endurance for mobility on his hands and knees has gone way up.  He's no longer falling down onto his belly in quadriped because of his hips giving way.  He is back to getting from point A to point B in our yard.  The sudden increase in shea's dirty laundry is a happy change for this mom!  His speed is even improving and he's not tempted to scoot around on his butt like he did a few weeks ago as often now.

When he is moving on his hands and knees, he can now advance one hip and then the other like he used to!  This was impossible for him two weeks ago.  He has to focus and work at it.... but he is doing it!  He's also getting in and out of his wheelchair with much less effort and strain completely on his own.

Many improvements we've seen in the last couple of weeks are at least in part, directly related to a decrease in the spasticity of his hips that we were struggling so much with.  It was really limiting his progress for a while.  He started using a special positioning pillow while he slept at night to keep his legs out of the "tight" positions.  He didn't love it, but it really decreased the time it took every morning to get his legs to loosen up and cooperate.  I am hoping this decrease in spasticity continues, and that it doesn't get problematic again.

Now that the tone is getting manageable and shea is spending some time weight bearing on his legs we notice he has a very significant leg length difference.  (maybe bc his spine is now straight from the scoliosis correction, previously "even" legs are now uneven because the pelvis is in a different position.)  If you notice pictures with one shoe on, one shoe off, or weightbearing with a book under one foot....that is why!  It's hard to stand on weak legs if one isn't touching the ground!  Once he finally gets the ok to stop wearing his back brace and we can start to use the HKAFO's (long leg braces) again, we can correct this with brace adjustments and a shoe lift.

The supported standing, with shea using both arms to hold himself up has progressed from seconds to minutes :)  We still have to stay close as his legs can give out, but it's progress none the less.  Our goals will be that he can start to stand with only one arm support, so he can use the other arm for play and function.  Also, that standing would again become a preferred position and not "this is too hard i hate it" type of activity :)  The tall kneel strength is also coming along as well.

This week, we finally have started bringing in an additional physical therapist to work with shea twice a week.  Shea is getting a little sick of mom playing PT and a few times we possibly weren't each others favorite people!  For mom the realities of juggling work, managing the other kids, the medical cares, doctors appnts etc meant that some days PT wasn't getting done quite as much as it  ideally needed to be.  That is why we have a new face around here these days.  Shea enjoyed her quite a bit, and publicly declared she was "more fun than mom" during PT time.  That is fine with me!

The cord irritability is still affecting the bladder etc, and we are treating for a UTI currently.  It was caught early though, and i think it should be a quick fix.

I could go on and on... but those are the main points.  Thank you for continuing to pray him and us through this long journey.  I'm very thankful that we continue to see progress so he is motivated to keep on working hard at it.  We've also had lots and lots of red tape about getting that blasted stander that he needs....so please pray those road blocks will be lifted.  Everyone is sick and tired of getting weekly phone calls from me!

Hopefully the next update will bring news of a "back brace burning party", or something equally as thrilling.  Although he has his moments... i'm still in awe of this kid's resilience and for the most part his positive attitude.  Wish we could bottle that!

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