Taysen does not appreciate this time of strengthening his back & neck muscles as much as I do. This is very difficult for him and he often gives up and throws himself to the floor out of sheer exhaustion....
He was having a particularly difficult time today, so I threatened him with...
I announced that this is the exact reason he still needs naps, because he becomes a floppy mess, unable to hold up his own head.
(Taysen hates naps... on the occasion that I talk him into napping, he declares the instant he wakes.. "I'm never going to sleep again!!!" "never ever!!!" "you'll never make me take a nap again!". he's a feisty one, that's for sure.)
I think he realized he needed to show off a new trick at this point because as soon as he heard the word "nap", he says.. " hey mom, watch me! look what I can do!!! " If you can't tell from the pictures, Taysen is on his belly and he is NOT propping his head on his hands. This has NEVER happened before!!! Yes, I realize this is a motor skill most 3 month olds can achieve, but for my son, this is a big deal! I then jumped up and down clapping my hands and cheering.
I know that SMA is a progressive neuromuscular disease with no treatment or cure.. BUT i am thrilled with his maintenance, and in this case... maybe even improvement?? Perhaps he is able to better use the muscles he has? ...gaining some strength? Perhaps the liquid albuteral added to the drug regimen is giving him a bump of strength? Or.. as I like to think,
perhaps the fact that he is swimming his little arse off in the pool every night for 4 months is actually doing something?
He is not able to get into this position by himself. I did not time it, we are talking less than a minute here but so what, he's still a rock star. I am happy. These little things excite me.
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