Apr 7, 2011

Orthopedic visit news

So you all know I take Manny to Physical Therapy.  He's authorized to get up to 3 hours per week but that's almost impossible to schedule.  Most weeks he gets 1-2, some none.  And we're still making tons of progress because I work my butt off at home. 

Anyway, Manny is making such amazing strides.  First we worked on head control. Then came ability to sit. Next came the ability to use his arms.  Shoulders are next.  But there's been very little progress on his legs.  Yes he has some movement (like he can "clap" his feet together) but that's about it. 

Part of the reason it's behind the other areas is because his feet were upside down and inverted in.  We did all the serial casting and then got his AFO's (ankle, foot orthotics).  So now we're all set to start working on leg movement. 

Or are we?  The other day, the PT noticed he has "hip clicks".  That means they kinda go in and out of socket a bit.  That is a problem if he is ever going to do any weight bearing things. 

So what's the big deal?  I'd love for him to be ambulatory.  It makes me positively sick to my stomach that he is so completely STUCK where he is sat.  He isn't frustrated by it thankfully. 

I watch other almost 2 year old little boys and the are running machines.  They are climbing, jumping, getting into every thing.  They are little terrors!  And Manny?  He just has to sit there.  I want him to be able to MOVE. 

So Thursday, we're going to see an orthopedic doctor to have a full back and hip and leg evaluation.  I'm not sure all that will be done but I know they will look at the spinal MRI we had done (which shows normal).  And they will see if they feel he can do weight bearing things or if he will need some kind of orthotic devices on his hips, etc. 

I'm very anxious to hear what they have to say.

Thursday pm:  So I'm home from the Orthopedic visit and he wasn't all that concerned about his hips.  Just in case he did a hip xray and it showed abnormal but expected.  I discovered something today.  Have you ever seen a pelvis xray?  The hip sockets look like (   ).  But his look like this  l   l .  Turns out, everyone is born with hips that are straight up and down.  But then with walking, they start to make that classic looking curve shape... but if you never walk, they don't go that way.  Interesting, huh?  So his are rubbing against each other.  He cleared Manny for standing. 

Meanwhile, I "happened" to run into the motion analysis person there.  She hasn't seen him since early January and was in SHOCK at how much Manny has changed since then.  She was also in shock that he wasn't in a stander already.  She was wondering why they are so overly cautious with this. 

The "bad" news from the Ortho doc though is that he doesn't feel Manny's feet are where they should be.  We know he lost a little ground with his feet placement during the month in the hospital (and the IVs were in his feet).  So he wants Manny to be serial casted again.  If it doesn't work this time, he will consider surgery (but that's not his first choice). 

Last time, Manny kept slipping out of his casts.  The doc suggested casts that go OVER his knees.  That should help them stay put but will also be a pain in the hiney.  But better now than when he is partially ambulatory.  He wants this done immediately. 

Tomorrow ... we're doing the muscle biopsy.  I blogged about it recently.  I hate that we have to do this.  I hate it will cause him pain and there will be a scar.  This isn't like this is "fixing" anything.  It's not surgery to make something better.  Instead, this is just a test.  A very invasive test.  We won't get news for weeks most likely or even a month or more.

And I'm anxious about the choice. 
Anxious that it won't give us news. 
Anxious that it will give us news. 

1 comment:

  1. I would love to hear from you about what all you do at home with little man! My little man needs me to learn that :) PRAYING for all of this with Manny. Jeremiah's hips are slightly sublexed. If they come out too much more we are facing surgery because it can severely damage the main artery in the leg if we dont. So many things to be concerned with our little guys! Maybe they will get Manny a stander at home!

    hope to hear from you soon,