Wow...we were gone forever!!
The visit with Dakin's neurologist, Dr. Iannaccone, went very well. We are so lucky to have her as a doctor--she is incredibly knowedgeable, and is on the FSMA (Families of Spinal Muscular Atrophy) board of doctors, so she really knows what she is talking about. It was she who decided to test for SMARD when no one else knew what was going on. Anyhoo, she said we were doing a great job with him (always nice to hear!!!) and that he looks like he's doing great, especially with the eating. I picked her brain with some SMARD questions--who is doing the research, can the specific mutations indicate weaker/stronger cases, etc. The research is all going on in Europe, which I figured, and she answered the rest of the questions as best she could--really, SMARD is so 'new' a disease that they just don't know a lot of answers. And that's ok. She approved of our ideas to help raise SMARD awareness, so I'm feeling pretty good about that...more to come on the subject!!
After, we chanced a visit to a restaurant--this was only the 4th time Dakin had been to a restaurant since birth, so he was pretty fascinated. We went to India Palace, which is one of the best Indian places in Dallas (SO YUMMY), and he was intrigued by the dim lighting and all the people there. They were so kind in accomodating us--which I know, legally they have to do, BUT they don't have to be nice about it, and India Palace was.
This is Dakin enjoying having bites of my ranch dressing. See how dark it was in there? His mouth is white, you just can't see it!
Dakin is very interested in drinking from cups now...something we'll have to explore, as he is still on a bottle.On the ride home he was absolutely miserable...tired boy. He's not used to sitting up that long.
The other neat thing he did today was drink from his bottle sitting in his chair. I didn't think he could do that sitting up. He just never ceases to amaze!