The school is great and they are making provisions to make him as comfortable as possible. They are covering all the fluorescent lights in his classroom with scarves and they are letting him sit on a sensory chair which is basically a ball chair. We are all hoping that the the homework is not too much this year. After such a long day, he can have nearly an hour of homework each day. Byron is very disciplined about getting his homework done right away, but he often does not have the brainpower to focus enough to complete it accurately. So it's a struggle.
As far as next steps with the surgery, it is a waiting game. We have an appointment on the 21st of September for an all day neuro-psych evaluation. This will let us know if he has had any intellectual regression since the last test in December of 2016. The approvals for the MEG test are moving along. When these tests are done we travel to Tarrytown to meet with his doctor. She has to petition a large board of surgeons and others before the surgery can/will be scheduled. So we wait. I'm guessing it will be October/November. It would be nice if it would be before winter so traveling will be easier.
The surgery would be at Columbia Presbyterian in New York and then rehab at Blythedale Childrens in Westchester. Blythedale is a great place and he has been there before. They have a school within the facility and lots of fun activities for the kids. Even if kids are on a stretcher or in a wheelchair, everyone participates. Some children are there for 6 months or longer, but Byron is likely only to be there for about a month.
Byron is spending his time before school playing his beloved video games, visiting with family and friends and making videos for his you tube channel - Byron Gamer Plus. I just posted this video last night for him and given everything he is going through it is such an inspiration. He chose this song and it seems very appropriate.
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