Thursday, September 26, 2013

pictures of brace

Finally, pictures of Russell and his brace!  First, here is a picture of Russell in his brace, with his shirt on. You can't even tell hardly that he is wearing a brace! This is nice.  People don't stare at him as much anymore.  I really appreciate that.
 
 So there is the same mushroom-shaped window in the front.  Scott picked out the camouflage color.  You'll notice there are no over-the-shoulder straps.
 
 Here, you can see the three Velcro pieces that hold it together tightly in the back.  There are lines on the Velcro that help us know how tight it needs to be.
In this picture, you can kind of see the indentation just above his hips.  That helps hold his pants up, as in the picture below.  The cast was the same in that way.  The snake was his favorite toy that day.

Wednesday, September 18, 2013

BRACE!! Woohoo!

Yes, Russell is now in his first brace.  It's so so so much better than the cast! We got it on Aug 21 at Shriner's SLC hospital.  The brace is made out of camo-printed plastic that is *somewhat* flexible (so we can get it on and off).  I'm hoping to get a picture of it and add it here so you can see what it looks like.  It is attached with 3 big pieces of Velcro in the back.  There is ALOT more room in the hip area and it is a lot less absorbent than the cast was, so diapering isn't as much of an issue as it was.  We still can't get the diaper up all the way, so we have had a lot of leaks at night, but the great thing is that we can take it off in the morning, let it air out, and give him a bath.  He doesn't have to live with pee!!!  He really likes it.  He seems a lot happier with it on than with it off.  I'm guessing that's due to muscle weakness, and that he's so used to having SOMETHING on.  It's kind of funny to me, but he gets excited when we take it off AND when we put it back on.  It's never a problem for him either way.  I don't understand that, but I'm so grateful for it. 
We've started pool therapy in the last couple of weeks.  We go twice a week for 30 min.  He is SO WEAK.  It's a little hard on me to find out that's he's weaker than I thought he'd be.  It just makes me sad.  I know we have so much to be grateful for and that makes me feel like I don't want to be sad about that.  I guess it just makes me worry a little.  These feelings are tied into how I'm feeling about his MRI that he's having next week.  They (the doctors at Shriners) want to keep doing testing on Russell's muscles.  He seems to be weaker than they think he should be at this point.  He has a hard time gripping things with his hands, has no arches in his feet (he should have those by now-and the fact that they aren't there could be due to muscle weakness), and has zero core strength (this is really obvious in the pool).  Yet his arms and his legs are really strong.  There doesn't seem to be a problem there.  So the MRI will be on his brain.  Most likely they will find nothing.  And that would be a good thing, because that would rule out the worse diagnoses.  They will do more testing at Shriner's in February probably, since that is when we will be there next.  The MRI is scheduled for Sept 26.  I have faith that everything will be ok.  No matter what they find or don't find, I'm sure we'll all be ok.  This is part of a loving Heavenly Father's plan for us, and especially Russell.