children's hospital

As most of you know, Riley suffered a stroke in utero that caused him to have seizures in his right arm. The seizures were first observed when he was less than a day old and he was immediately transferred to Children's Hospital in Boston. He spent a total of 12 days in the hospital as the seizures were brought under control with meds. Within 3 months, we were able to wean him off the meds entirely and he hasn't had any seizures since. The advantage of having a brain injury so early in life is that the plasticity of the brain may result in full recovery or at least the ability to compensate for the injury.

We have been bringing Riley to Children's every six months for a follow up assessment to see how his development is progressing. They put a pretty high standard on his development, so if he doesn't make the grade, they refer us to Early Intervention. EI has observed him twice so far and each time said that his development was within the range of normal, so no intervention was deemed necessary.

Last month, I brought Riley in for his semi-annual appointment and the first thing the neurologist noted as he was running was the high tone (hypertonia) on the right side. This means that the muscles are tight and don't stretch as much as they should. Since his stroke was on the left side of his brain, they have been watching his right arm & leg for hypertonia. It's not severe, but there is reduced range of motion on that side of his body. Since Riley uses his right arm and hand much of the time, we had not noticed this at home. She recommended that we contact EI and see if he would benefit from some occupational therepy to increase his muscle tone on that side.

He was then was assessed by a developmental neuropsychologist. He got high marks for socialization & congnitive development. She noted his "mild fixation" on lights that were turned off. This made us laugh, because Riley is obsessed with lights! Upon entry into a room, he scans the lights and calls attention to the ones that are off by pointing and saying "oh-oh". This happens when we're out too, causing people to comment on his good observational skills and that perhaps he'll be an engineer. I'm am hoping that he has some of his mama's organizational skills!

She concluded that his development was mixed. Though his fine motor skills were as expected, he resisted some tasks that indicated a lag. She encouraged us to provide opportunities for him to practice wrist rotation, pincer grasping and develop strength on his right side in particular. To do this we give him items with twist off caps, put coins in his piggy bank and encourage him to play with legos.

His receptive language is fine, but his expressive language is behind. This we knew, but weren't too concerned since he does talk and clearly understands us. Since he uses his 6-8 words on a daily basis and makes attempts to say other words, his prognosis is good. It appears to be a problem with motivation, not abilty. They want us to watch him over the next few months to see if it improves before recommending any speech therapy.

So, we're going to meet with EI again in the next few weeks and see if he will qualify for their services this time. We'll keep everyone posted with the developments.

Shelby