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.

Sunday, November 29, 2009

New York Pictures

We had a lovely time in New York City visiting my brother Jeff and his new wife Patricia.   We intended to stay until Sunday but my already bad cough got much worse so we came home a bit early.  While we were there we visited FAO Schwartz, a local park on Bleeker Street where Byron had fun romping with another two year old and enjoyed a tasty Turkey Dinner at the home of Patricia's parents.  All in all a great time.

Saturday, November 14, 2009

Sweet Memories

There are moments, as a mother, that you want to capture and remember so that when your child is older and maybe not so full of love, you can look back and smile at the memory.

When I pick up Byron from daycare, as I walk into the classroom, I spend a minute or two just watching him play, before he sees me.  And then, either he'll look up or the teacher will say "Byron  - look who's here."  Every time, he looks up, and when he sees me his whole body tenses with emotion.  He smiles, but he also look like he's going to cry.  He pounds his little left fist into his right hand over and over clapping, and shouts "Hooray!! Mommy's home!"

And then he runs full tilt and wraps his whole body around my legs.  I just love it.

They Grow Up So Fast

A little anecdote.  Bob took Byron to the house next door that we manage while the owners are away.  Bob was fixing the closet.  All of a sudden Byron appears at our back door, which is quite a trek from the other house (through the yard, not the road!) and says he is looking for his own cup. I just watched to see what he was going to do.  He walked in to our kitchen, got himself an empty plastic cup from the counter, then let him self out the back door.  I watched as he climbed the hill back up to the neighbors house.  He's two and a half!!  Such an independent guy.

Friday, November 13, 2009

Byron's Big Test

The countdown to Byron' transition from Early Intervention to the School District begins.  Byron had a mandatory Psychological Evaluation today with a very nice woman named Leslie.  The results of this test will be paired with the recommendations of his current therapists to determine if Byron will still be classified as "Special Needs" and will continue to get services.  This is where many, if not most kids with Hemiplegia tend to excel.  Kids with Hemiplegia can do very well on cognitive tests, which are one of the main factors that determine whether a child can continue to receive services.

A word here about why services are important.  If Byron is declined for services he will no longer receive any Physical, Occupational or Speech therapy and will  be mainstreamed into school when he's five.  This means no special ed pre-school and all therapy will have to be private. Some parents choose to go this route, some for fear of the stigma in the school setting.  What I don't like about this is that there is no coordination of services and Byron would be left on his own in the classroom.  He would simply learn to compensate on his own.  He would manage but it's not ideal.

Byron aced the test.  "Normal" cognitive range is 80 to 115.  Byron got a 105.  At first in our discussion, as far as she was concerned, she could not recommend Byron for therapy in the school setting.  But then we began to talk about some of Byron's social challenges.  In Daycare he still does not interact fully with children. If they call his name or approach him he just stares blankly.  When I pick him up I always find him playing by himself.   I believe this has do to with a sense of over-stimulation that occurs in a room full of children.  He shuts down when there is too much noise and activity.  Also, when they hit him or take toys from him, which is normal possessive behavior at this age, he has little in the way of self-advocacy skills.  He shuts down further and isolates himself.  I watched this happen the other day on a slide.  A child pushed him out of the way to go down the slide first and Byron went down the slide and then left the room.

After hearing all this, the therapist said, on a social scale, Byron would rate a 29.   Typical for his age is 33.   (no idea what this scale means).  Finally she said based on this she would recommend placement - yeah!

Our final hurdle to Byron beginning pre-school on January 4th, is a meeting with all the therapists on December 2 along with the school administration.  I'm keeping my fingers crossed.  If he is admitted,  this will ensure at least 2-3 more years of therapy services as well as support from the administration to ensure that Byron is meeting his learning goals.  I feel this is so important for Byron.  By Kindergarten my strong sense is that he will be ready to embark on his school journey as any "typical" child.  I just think this little head start is all he needs.