Friday, August 29, 2014

Isaiah's Spine

The last day of Pam went well; Isaiah and I watched a movie and the time went rather quickly.

When it was all done, Dr. B stopped in to see us and talk more about Isaiah's back.  

I had seen the radiologist's report.  "There is a midthoracic dextrocurvature and lumbar levocurvature.  There is kyphosis at the thoracolumbar junction."

I didn't know what the heck any of that really meant, but I saw the word curvature and could take a guess.  I saw the word kyphosis and pictured a brace, as that's what has caught my attention with other OIers and the word kyphosis was involved.  My heart had been in my throat since seeing the findings and since my brief meeting with Dr B.  

Dr B. knows me too well and knew I was upset.  Upset with the findings that confused me and upset thinking this was all my fault.  I have been pushing Isaiah.  Pushing him to get head control.  Pushing him to sit up.  Pushing. Pushing. Pushing.  Pushing him to do these things helps him develop muscles.  Developing muscles is key to help protect those bones. 

But do you know what you get when you push a spine...when you have it in the sitting position before it's ready....when it has a heavy head, that's so big that it is off the charts, pushing on it?  You get curving.  You get "wedging".

Do you see the lines drawn on the the x-ray?  The bottom vertebrae look great but that mid-lower area is wedging...curving...(ignore the very crooked thing in the picture...that's just the tubing hanging down from Isaiah's port).

We believe one of the problems is the seating I've been using for Isaiah since we came home from the hospital in September of last year.  I thought soft seats were the way to go but 2 of 3 chairs are hammock-like a when Isaiah sits in them, he kind of hunches.

Not good.

He needs a flatter, more stable, surface.

I showed Dr. B. how I have been holding Isaiah to practice head control.  We agreed that I need to grow a third arm in order to support Isaiah's lower back because he again hunches.

We talked about trying to give Isaiah time to let this fix itself naturally...meaning without a brace...If I stop putting him up all the time, and give him more time laying to play, he'll get there eventually.  Tummy time is important and something I've avoided because Isaiah always gets his arm stuck.

Now I am working on making tummy time possible.

Water therapy continues and that will help Isaiah develop those important, bone-protecting, muscles.

For now, when he does sit up, we put Isaiah in places that we know he is fully supported...

And the helmet? Is only happening when Isaiah's laying down.

His PT and I are afraid that the extra weight, although only a few ounces, isn't helping his spine, so it's best not to push it.

Luckily we have an awesome PT who is helping me review Isaiah's seating and giving Isaiah proper lumbar support.  Backing off kind of goes against some OI theories of keeping OIers moving...but we are keeping him moving, just in a horizontal position instead of vertical...for now.  Isaiah needs time and we are giving it to him.

Do you know the amazingly positive thing that we saw in the x-ray? When comparing it to his x-ray from when he was first born?

We saw brighter bones.  They aren't as "clear" as they were a year ago.  That shows that his "Pam treatments" (pamidronate treatments) are working...

and that is a wonderful thing.


  1. I really do wish the best 4 Isaiah,the poor little man needs tenderness,and understanding,i will keep him in my prayers,and you also.Time heals all wounds,so keep a stiff upper lip.

  2. Don't ever second guess the fact that you are one of the most amazing moms that I"ve ever met. He's a lucky boy. All we can do as parents, whether physically, mentally or whatever other way... is to educate ourselves, (as you and Dave have from Day 1), utilize our resoucres, and to do the best thing AT THE TIME that we can. Including loving our children. Give yourself some credit. If you're going to play monday morning quarterback, learn from it, then give yourself some slack, and know that you did and continue to do, everything in your power for Isaiah,

  3. BTW... YAY for the brighter bones!!!