MRI results and new brace coming!

We finally heard back from Shriner's about Russell's MRI, and everything looks normal.  Yea! Not really a surprise, but really good to hear.  We can all breath a sigh of relief now.

Also, Russell's brace is getting too small for him, so we are getting new x-rays and two new braces for him.  One will be like the one he has now, just bigger, and then another one that he will wear at night.  It's a brace that will stretch his back and spine in the opposite direction as the curve.  Sounds painful to me, so I'm expecting some rough nights at first with this.  I'm glad they're doing this for him.  During physical therapy, we've notice that he's extremely flexible in the same direction as his curve, but is very stiff leaning the opposite way.  We're getting fitted for these two braces on Nov. 5.  On that same day they are going to do a muscle biopsy and a lumbar puncture (spinal tap).  This is just continued testing on his muscles. 

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.

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. 

How to rebel (properly) against wearing a cast

This is Russell speaking here.

I am so sick and tired of this darn cast that I ALWAYS have to wear.  It's there when I sleep, eat, breathe, poop-well, you get the picture.  I've had it on for as long as I can remember-except for a few days a couple of months ago.  Which leads me to tell you that I KNOW for a fact my parents can get it off.  I've yet to convince them to do it again though.  Just so you know, I'm a very patient guy.  I wear this thing, and I don't really complain.  I've figured out how to do just about anything/everything with it on-sometimes better than those who don't have to wear a cast around their torso.  I'm getting pretty strong too.  I figure there is some unknown reason I have to wear this; I trust my parents.  I know they love me and I know this is somehow good for me.  But that doesn't mean I have to like it.  So I'll let you in on a little secret: there is one thing I've figured out to do to "remind" my parents that I'd like it off.

First, I have to explain that I have to wear a Knit-Rite shirt underneath the cast.  Something about this shirt is unique-if you pull on the threads, you can unravel the shirt and make awesome holes in it.  I've made several pretty awesome ones-I know they're awesome because of the big reactions I get from my parents when they see them.  But, not only do you get to "improve" the shirt, you also get really long pieces of "string" from the shirt when you do this.  You can wrap them around your finger, eat them, throw them on the floor, or-and this is the best idea-you can stick them up your nose!!! Seriously!  Noses make great hiding places.  And that gets a REALLY cool reaction from my parents too.  Even better than when they see the big holes.  After that reaction dies down, they take off my "improved" shirt, and put on one that doesn't have any holes (yet).  Which is awesome too-it's like a whole new canvas to make brand new holes in!!! It's great!! So far, I have 5 "masterpieces". 

 

By the way, now my parents have taken me to the doctor a few times where the Dr sticks long skinny shiny things up my nose.  This hurts!! I can't figure out why they would do this to me! My nose is sore all the time now...

And if you want to see my masterpieces, you better come soon.  My parents are making me wear these really tight shirts now over the top of my cast, and I can't make those holes anymore (yet).  I'm a pretty smart guy though.  I wonder if I try to get my fingers down in there again...who knows.  Maybe it'll work next time.

 

***Back to Mom (Amy): He really is too smart for his own good.  It did work again...even with the tight shirt on over the cast. I wrote the above portion yesterday (didn't post it until today when I loaded the pictures), then this morning I went in to his room to find another ruined 40$ knit-rite shirt.  He is getting his cast off in two days...but he'll have to wear these shirts again under his brace.  Anyone got any ideas?

Russell's x-rays

I love seeing the comparison between his first x-rays and his most recent x-rays.

 

March 2012, 17 months, just before he got his first cast on.  45* curve, 45*RVAD

Feb 2013, with his 4th cast on, 8* curve, 0* RVAD

May 2013, with his 5th cast on, 0* curve, 0* RVAD

I cannot really see a difference between the bottom two.  His ribs are still not mirror images of each other, and I hope that just comes with time as his back is straight.  I haven't asked the dr.'s about that yet. 
Doesn't he look good though?  I'm so glad it's working!

A new cast and a miracle

Russell's had his new cast on for a week! It's going really well.  It's always pretty crazy at first-and it seemed a little more crazy this time, but then again it always does, so maybe it's just my faulty memory.  :/  He'd only had his 4th cast off for about a week, so this was the first time he remembered getting the cast off when he got the new one on.  He was pretty mad when it was put back on, and he now knew that we have the "ability" to take it off.  So for the first few days, he kept grabbing the front of it and saying "OFF. TAKE OFF."  He's now given up on his parents ever catching on and taking it off, but it was so sad for those first few days.

So, I didn't go with Russell for this cast.  It's the first one I've missed.  Apparently that's the key.  Because he doesn't have to get another cast on!!...We're going to move on to a brace in August.  When they did the x-rays after applying this (5th) cast, they gave Scott the great news = there is NO NOTICEABLE CURVE!!  In other words, we're down to 0* RVAD AND 0* Curve.  This. Is. Amazing.  This is a miracle.  Really. 
So I'm thinking Scott should take the kids to all future medical appointments.

He was fitted for his brace while under anesthesia at the same time they did the cast.  Scott picked camo green.  I think that'll be a fun choice.  The brace will fit just like the cast did with a few exceptions:
No over-the-shoulder straps, it just goes under the armpits.
Less bulky, by far. 
It can get a TINY bit wet, and if it gets dirty, we can just wipe it off.
It is removable.  He'll wear it for 23 hrs./day at first.  Probably for a long time.  The straps will be in the back.

The mushroom-shaped window in the front will be the same, so will the rectangle window in the back.  It will still go down over his hips, because they anchor it.  It is still a "hard" brace, so it still limits his mobility just like the cast. 

It mostly represents PROGRESS.  Which feels so good.  We just feel so blessed to have such wonderful doctors and other medical professionals who've helped him and us through this journey so far.  I am grateful for all the friends and family who have prayed for him and us.  We are all so lucky to be a part of such a miracle.

4th Cast removal!

 Tyler took the pictures for us again.  Here, you can see the top bar is cut through already.

 Again, a view of the top cut bar, and Russell can do some awesome things with his fingers.  He's got really flexible fingers.

You might think that putting a top hat on the one wielding the tin snips will not frustrate him AT ALL.  You might be wrong.

 I think this picture is funny because it makes it look like Russell can bend his cast this much.  He can't.  You just can't see Scott's hands wrenching it apart.  I can't even get it to separate this much by myself!

 The cast is finally off!

 He always looks so wierd right after it's cut off.  Like he has a really big head, with this teeny tiny body.  He usually loses weight in the cast, so he's just skin and bones underneath it.  I'm going to try to get a better picture of that.

Then he went right outside and did this.  It was funny because it was sooo much easier to get up with out the cast, and he was really surprised.

Now I'm just spending alot of my time snuggling and cuddling him.  There's nothing like the feeling of giving him a hug and him giving one back and just melting into it.  No bulky cast in the way.  I'm grateful for these times!