Karson doesn't know what to think of Roscoe
Today we went down to primary's for Karson's visit with Dr.Swaboda and it made me start
thinkng about last summer. I'm so glad that we didn't listen to PICU doctors . In so many words they told us he wasn't going to make it, but we just couldn't give up on him. Look at him now, he's been home for 4 months!
He's doing very well for how weak he is. Just this last month his arm's became weaker. He can move them if we help him lift his forearms up and then he'll concentrate on moving his wrist's back and forth. He's never really been able to move his legs, but he can move his feet a little. About a month ago his eyes started shaking and we thought it was the muscles getting weaker, but his Doc doesn't think so. It could be a vitamin deficiency or something with his brain so were in the process of getting lab work back and getting an MRI. Dr.Swoboda said his muscle's have become weaker,but she is so pleased that he has been healthy.
At the appointment I was talking to Dr. Swoboda's nurse (Abby) and she made the comment to me " We thought we were going to lose him a couple times, it's really a miracle he's here" . We're just so thankful he's still here! I pray someday we will be able to see a cure for this horrible disease. I just don't understand why there aren't more people that are aware of SMA. It's the #1 genetic killer of infant' under two years old. Infact we found out today that 2 more kids that were in the hosp the same time we were this past summer passed away recently. The good news is that they are working on a cure.
