Blog Overview


Byron Pratt, age 10, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Monday, August 31, 2009

A Lovely Place to Stay



A word here about the generosity of our good friend Lindsay Satterfield. Lindsay has so generously lent us her wonderful two bedroom apartment for the duration of Byron's treatment. It turns out that his therapy exactly coincided with Lindsay's annual beach trip to South Carolina. She also took our dog Daisy with her. Daisy loves the beach and this gives us the freedom to just focus on Byron. Lindsay's apartment is about one hour from the Kennedy Krieger Institute. We spent the weekend exploring multiple routes into Baltimore and have finally settled on the most direct route via the Beltway. I'm a little scared of that road but oh well. The other routes pass gorgeous estates and horse farms, but they are a bit longer mileage wise and can be very sloooow.

We are so comfortable here and have everything we could possibly need.
Thank you so much Lindsay! We love you!

Info About the Cast

Byron's cast will be put on tomorrow. Today they just took a mold. I was reading about the cast this evening in the pages of info they sent home with us. The cast will be waterproof and must be rinsed everyday. He can even swim with it on! Apparently you don't take it off to rinse it, you use a sprayer to get inside the cast, between the cast and the skin, and then let it air dry. The booklet says it takes about an hour to dry. I have to say it would drive me crazy to have a damp snug thing against my skin, even for an hour. The cast will be semi permanent i.e. it will be removed and checked once a week. Towards the end of the program it will be removed for good and he will have five days of bi-manual therapy to integrate what he has learned. Occasionally he will go on field trips. I was thinking zoo, aquarium etc. No - What they mean are places that he might go when he gets home, the mall, library, grocery store. I think that's pretty cute. They will take him swimming towards the end of the program. It does seem strange to me to leave him somewhere every day for 3 hours. That is the most I will have consistantly left him by himself. Perhaps I will grieve, or perhaps it will be a nice break!

Byron's First Day of CIMT






CIMT = Constraint Induced Movement Therapy.

Byron has his first day at the Kennedy Krieger Institute in Baltimore. MD today in their prestigious CIMT program. The hours for the first day are 9am - 2pm. Today will be an evaluation day.
Around 11:00 we met the medical director and founder of the program, Dr. Pidcock. We found out a few weeks ago that he is my sister-in-law's brother! He was wonderul and after meeting Byron, said he was a great candidate for the program. I'll try to get a picture of him tomorrow. Right now Byron is off with three different therapists.





Husband Bob and I are waiting to pick him up. They have given us a little room with internet access so we are having a good time. I just played internet scrabble with my friend in France and Bob is working. Right now it's 12:30 pm and they are casting Byron's right arm so that tomorrow they can put on a permanent, waterproof cast. This will prevent him from using this arm so that he will develop skills in his left arm and hand. Byron has left hemiplegia caused by a stroke to the right cerbral artery before birth. He has good use of his left leg but limited use of his left arm and hand.

We will be back here every weekday from 12:00 noon until 3:00 pm for four weeks or so. Dad and I are not allowed in during therapy so I will probably spend time at the YMCA down the road and Bob will work. Can't wait to see the little guy with his new cast!