Not much has been happening in biggieland this week. It is too hot for anything. We did get Aiden a sprinkler and are going to try it out this weekend while Scotty is off.  Not sure how it will go over. Aiden used to hate water but has been better lately.

He is still loving his big boy undies. I went and got him some mickey mouse ones today (along with a bunch of other stuff. I have a shopping addiction)

Aiden had hit a plateau with SMA. He had not lost any abilities in so long but the last couple of weeks his fingers have became so weak. He can barely move them at all. He can only really move two on his right hand and none on his left. He cannot operate any of switches right now. Thankfully, he is naturally a happy kid and is content with me setting his toys off for him.

We were able to get into July's MDA clinic, our main two objective there is: finding a switch he can use with tech specialist and getting fitted orthotics with Dr. Law.

That means that two Weds in July will be spent at Children's. The 8th is vent clinic w/ Dr. Makris (and blood work to see if diet is keeping all his levels right) and the 15th will be MDA clinic.  


I'm trying not to let this sudden weakness bother me. I always said I could handle whatever SMA threw at Aiden as long as he could still smile and show emotion.  Aiden, overall, is healthier than he has been since diagnosed. He hasn't had an antibiotic since Feb (knock on wood); this is the longest stretch since he was diagnosed. He has been alot more vocal these past couple of weeks. Because of muscle weakness he is not able to form words but he does not lack for volume. Here is a video we made a couple of nights ago while getting ready to do his cough assist http://www.youtube.com/watch?v=IlwYt3_iw4k

All for now,
Aiden's Mommy