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The One Thing

January 4, 2008

It’s been one year, give or take a week or so, since the Boy started his therapy regimen to battle hypotonia.  This week, he’s had evaluations with his OT and PT to review where he is and where he should be.  It’s encouraging, and it’s not.  He’s made significant gains in some areas, but you can see others where he’s far from where he should be.  He can do so many things that he couldn’t do when he started PT a year ago.  For instance, he’s a speedy crawler, so much so that his grandfather nicknamed him “Scooter”.  He’s cruising on furniture, and crawling up stairs unassisted.   But he’s not standing or walking.  Yet. 

To put everything into perspective, I sat down the other day and watched the video I took of him when he first started PT.  There he was, a floppy and pale little boy being put through things he wasn’t entirely happy with.  The PT liked to see how his muscles moved, so he was stripped down to his diaper.  I had to bite back tears, seeing now what I didn’t see then, and that was how helpless he looked when he was trying to do things.  She used to do little baby sit ups and other activities to get him conscious of his feet, to help him know where his plane of movement was.  Sometimes, he was frustrated.  Oftentimes he would cry, so much so that we had to stop the session and have the PT comfort him.  I must have compartmentalized or channeled my emotions during these sessions because they affect me much more now than they did then. 

I do recommend that parents going through this with their kids tape a session every month or so, to give a reference point on how much progress has been made.  It’s hard not to be discouraged.  I push myself to focus on the achievements, and having to put what needs to be achieved in a positive light.  Like, how can we help him get there, not bemoaning the fact that he isn’t there yet.  It’s hard, but no one said this was going to be easy. 

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3 Comments leave one →
  1. Vicki H permalink
    January 5, 2008 1:39 am

    Ellen, every child is different, and every parenting path is different. If it helps, my son was diagnosed with failure to thrive at 3 weeks of age. Throughout his first year, he had serious daily vomiting, and at 9 months of age looked like a giant head on a stick – such thin arms and legs, no fat whatsoever, but he took after his father’s side their big heads (really). Finally after one final desperate call to the pediatrician, one of the partners finally put it together enough to refer us for a GI workup. He was diagnosed with an immature stomach sphincter, and was given a course of Reglan (prescribed to adults for ge reflux). Within days he started to keep the food down and put the weight on. He’s always been skinny, and he still has a gag reflex that is easily triggered. But he just celebrated his 21st birthday at Thanksgiving, and at 6′ 1″ he towers over me. There were many dark days before the diagnosis when I wondered how he would ever get to kindergarten, but he is there. And your little guy is going to make it as well. Keep the faith!

  2. January 6, 2008 10:53 am

    Thanks for the kind words Vicki. A friend was telling me a similar story about her son. He had the same issues as mine did – failure to thrive, low tone, therapy up the wazoo. He’s not a major star athlete, but he found his niche and became a blackbelt in Karate. That’s a lesson for me – IT Boy may not achieve some things, but if we find what he is good at and enjoys, that can make all the difference for him. You could say that for any kid, of course, but it’s just as important here.

  3. June 5, 2008 11:38 am

    my son is nearly 1 not sitting up not crawling just starting grabbing things out of my hand rolling over getting strenth in his back girgling alot eats very well but still not on lumpy foods due to his low muscle tone ive never done this b4 is there any body with any advice

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