Heath's Journey 5/7/09

mujul79's picture

Heath has been doing what I call episodes but I thought it was related to his apnea and just moving funny to try to breath. I have been asking about his funny movements and delay or possibility of Cerebral Palsy for months now and the pedi keeps saying his delay is because he can't do milestones yet because he is working to hard to breath. At LLL everyone suggested he have a brain scan because how he held his arms and pulled them in, and few times with one of the Dr's and they asked if he did that often and I said yes all the time, it did not click with me at all to me this is just Heath.

But my friends ex-husband has MS and today when she was over Heath started to do it. OMG I have never seen him do it so strongly and for so long, he would hyper extend one side his face got all crinkled and neck turned that way and the other side all tucked in, and he would do it and a few sec latter do it more and arch his back while doing it. I noticed he was off yesterday and his body curled all up at times the last few day but we thought he was just trying to sit up. She said NO that was not sitting up movements that was what her ex looked like even in the eyes during a seizure, where his body just gets stiff.

The gas got turned off today and our AC is broke last week (joys of me not working and trying to pay bills on 1 income) and so it has been hot in the house 80's. At first I thought that was just making him uncomfortable and he was wigging around trying to get cool. But after tonight I got on you tube and Heath looks just like the kids that have infantile spasms and I think he has been doing it since birth and no one noticed, and I just thought it was part of the apnea because he does it and they seem to happen more when on his back. Even my Aunt said when we where in FL that she thought something was off about him and I agreed but I could not pin point it as a symptom it was just a gut feeling and that is why I have been working so hard to get his genetic testing done soon.

I feel bad I am just thinking wow he has had spasms all this time and I thought it was the breathing issues because they are not shaking like what you think of what you think of seizures .