Thursday, October 15, 2009

An update on Ryan

I thought since I'm asking everyone to help raise money for Brighton Center that I'd do a complete update on Ryan.

Where to start? I suppose the top is the best place.

We have been working with Dr Seals, Ryan's Neurologist, to get the seizures under control. You may remember that he was having 60-80 myoclonic seizures in about 20 minutes almost every day. I'm happy to report that with the current medicine cocktail, he is now only having about 2-5 myoclonic seizures each day. We will be doing another MRI in about a week. We hope to get a clear picture of his brain so that the doctors can determine if there is a definite cause of his delays and issues. We suspect he may have mylenation issues and/or polymicrogyria.

Ryan still meets all the medical requirements to be diagnosed as having Cerebral Palsy. However, CP is an umbrella diagnosis and we don't want him to be labeled as having CP until we have really determined everything we can.

Ryan is now using his eyes more than he used to. They both move together for the most part, but he still doesn't see well in regular lighting. In a dark room, like our therapy room, he obviously sees and has a preference for his green toys. We don't know if he can't see the other colors or if he just refuses to acknowledge them.

His tolerance level for therapy has increased. In the beginning, Ryan would just pretend to sleep during therapy. He now will fuss a bit when things are hard, but he'll keep working. This has helped us to make some real progress. Ryan can now hold his head up fairly well, but tires easily and still prefers to lean his head to one side. He is now using his tummy and back muscles to help himself sit but can't sit without assistance. Ryan now likes to hold on to stuff, but can't move things very well with his hands. He can now (awkwardly) reach out to touch stuff. and has certain toys that he really likes to touch. (He still loves his Koosh ball the most!) He uses his legs to kick some now, but still doesn't bear any weight on them.

The submucous cleft palate, enlarged adenoids, and mild septal deviation seems to be of no concern. He no longer sounds like a lawn mower when breathing, and consequently can sleep through most of the night now.

He is still being treated for GERD (reflux). In fact, I just called the digestive dr today because I don't think we have his medicine at a therapeutic dosage. He seems to be having problems with reflux again.

As for eating, he is currently using Neocate 1+, and boy does it stink!He drinks it better if I add a couple of drops of Williams-Sonoma's vanilla bean gel. He now takes about 4-6 ounces at a feeding and eats about every 2 hours during the day. We are still trying to get him to take "solids". He simply won't swallow them.

I think that covers all the medical stuff. Ryan is almost 15 months old but is 3-4 months old developmentally. He is getting stronger and more vocal every week.

No comments: