I haven't gotten the full sleep study report yet, but Taye's pulmonologist did call me and said everything looked pretty good... no real evidence of obstructive sleep apnea so I'm assuming it was similar to the last sleep study (not worse = good) this is not uncommon for SMA kids to "pass" sleep studies because his oxygen levels stay good but he still needs support in taking deeper breaths.
I decided to let him have one night off a week of bipap. He was so stinkin excited, like it was Christmas! He chose Tuesday nights (because i told him on a Tuesday :) and he never forgets!
He also had an appointment with his endocrinologist. We are all thrilled that he had not gained any weight since his last visit with her! She asked him what he was doing, and he said he was on a diet. haha!!
Last night when I was rolling him over he reminded me (again) that he needed to wear appropriate shoes for P.E. tomorrow (lol) he is such a funny kid. Had to laugh at that one even at 3am.
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| Taking Jackson for a walk |
another thing that made me laugh...we were reading a book that had a picture of a boy in a wheelchair, and he said "hey mom, that's text to text connections, because i am in a scooter like him"
Taysen is our 7 year old ray of sunshine living with Spinal Muscular Atrophy type 2. He has a spunk and zest for life like no other and inspires everyone he meets. He has a huge imagination and a great sense of humor...he feels it is his purpose to make people laugh. Taysen loves to drive his powerchair at speed 5, watch movies, play with his toy animals and eat junk food.
River is our 5 year old little sweetheart. He has a sensitive soul, patient and protective of his brother. He is a huge blessing to our family, always ready to give and recieve a hug. He is sometimes called "Running River" as he is always on the go! River likes to play outside where he swings, climbs and gets dirty. He loves books, watching "The Berenstain Bears", and cookies & hot chocolate
I LOVE your child! He makes me so happy! We did talk about the connection between him and the boy in his book! I also love that he said that he needed appropriate shoes for PE. He never forgets anything! Thanks for letting me be with your son during the day! Marcy
ReplyDeleteGreat news! I don't dare show this picture to Drew as we have told him that he can't get his dog until he's at least ten years old:)
ReplyDeleteOh this post made me so happy! What an awesome kid you are raising!!!
ReplyDeleteahhhh taye!! love him... erin
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