Thursday, June 13, 2013

Early Intervention

I had my meeting with Early Intervention. Jack was evaluated when he was 3 months (adjusted) and tested at or below one month old for everything except "social" where he tested over 3 months old. He is a pretty social guy and loves to laugh and smile at everyone. He was approved for physical therapy twice a week and speech therapy once a week. At his age they do speech therapy through feeding and it is really about strengthening his mouth and facial muscles.

Early Intervention usually will come to the baby's home or daycare. I was really counting on that because I am having issues getting him everywhere and still getting to work. However, they are unable to find a physical therapist who can do that. So I am going to have to take him to physical therapy twice a week. They found a place that is close to my home but I am still going to have to bring him there. They think they will be able to get someone to come to us in the fall. I sure hope so.

We still go to our craniofacial therapist. She is also a physical therapist and is really helping Jack. We were there yesterday and Jack is really progressing. I can't imagine how he would have tested if he had not been receiving this therapy. She taught me a lot of exercises to do with Jack. His problem is that his neck and back muscles are really tight from all the weird positions he was in when he was on the ventilator. They kept him sedated so he couldn't move much and that made those muscles stiff. He also has low muscle tone in other areas. None of the therapists see any evidence of cerebral palsy and that does give me some comfort. They all do think he should catch up eventually but it will be a lot of work for him.

I do see him showing signs of improvement. He brings his hands together and he also pulls his feet together. That doesn't sound like much but going "midline" is a really good sign. He has discovered his feet but he can't grab them because his back muscles can't bend enough. One of his exercises is to roll him to try to stretch out his back. Another is to put a pillow behind his neck to stretch his neck muscles out. His neck is so tight that I really have to bend it so much just to wash him or dress him. His tight neck causes his tongue to stick out.

He has been doing a lot better with his reflux. I have stopped giving him the zantac and he really hasn't had any problems. He loves to eat and is getting to be a little fattie. They kept telling me he would have feeding issues due to his palate but he really hasn't.

Jack and Julianna are going to the doctor today. She is having a recheck because she had strep throat and he is having a well baby check. I  will see if he is on the chart for his real age yet. I think he might be. Jack is gaining and growing really fast. It took Julianna forever to get on the chart for her real age.  After 5 years she is still only in the 5th percentile for height and about the 20th for weight. She is small in stature but huge in personality.

I really am blessed with two happy kids. People always ask what I want my kids to be. My answer has always been that I want them to be happy. And they are very happy smiley kids.

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