Jojo I love your voice and I love your toy, I have been teaching Sky that song this year. I think I may have to go buy 1 more toy for Sky. Merry Christmas XOXOXO
Hi! I just found your blog. My twins are 2 with SMA2. I love this Lumidisk, I've never heard of it before. I searched Amazon for it, though, and it didn't come up. Any ideas on how I can find one to buy? Thanks!!
This is a snap shot of our life with Spinal Muscular Atrophy. After we found out that our son Joseph (Jojo) had SMA, we grieved. We grieved for all the motor milestones that he would never meet, and for the life that we dreamed and visualized for him. It is tragic to see our child not being able to move much, and then to watch as he progressively loses even those minimal movements and skills that he was born with. But we learn to adjust and keep the focus away from our grief. Because really, he is not fundamentally different from kids his own age: he learns stuff, he knows what he wants, he rationalizes, he whines and occasionally throws a tantrum, and he knows how to wrap his Mom and especially his Dad around his little finger.
Maria this is such a great toy, love it.
ReplyDeleteI love listening to Jojo sing the santa song while he plays.
Jojo I love your voice and I love your toy, I have been teaching Sky that song this year. I think I may have to go buy 1 more toy for Sky. Merry Christmas XOXOXO
ReplyDeleteHi! I just found your blog. My twins are 2 with SMA2. I love this Lumidisk, I've never heard of it before. I searched Amazon for it, though, and it didn't come up. Any ideas on how I can find one to buy? Thanks!!
ReplyDelete