Clinic

Today Riley had clinic with Dr. Swaboda. Riley didn't want to participate in any of it. He's usually really good but he wanted nothing to do with it this time. He cried through physical therapy assessment until we told him we were done and then he started to laugh. Next we went to see Dr. Swaboda to do his nerve stimulation exam which he screamed through the whole thing so they didn't get very accurate data. She said that he's big enough now that he can have some sedation next time. He is doing very well and we are hoping he can stay healthy during this cold/flu season. She looked over his sleep study report and we made some adjustments so hopefully Riley will start sleeping better on it. She also told us that there are some new drug trials that are coming up that look very promising. I hope we don't have to wait too long to see if they will be available for Riley.

Just Playing

We went to my mom's for dinner today and all the kids had fun playing outside. This is Riley in his new 'borrowed' stroller. He really likes sitting up and being face to face with all the kids. We can't wait until we get his.
 
 
 
 

Wheelchair Update

As many of you may know we have been trying to get Riley a wheelchair for the past three months and it's been quite the ordeal to put it lightly. I have not been happy at all with the experience. Yesterday a friend of mine, Tara, who also has an SMA kiddo, gave me the name and number of a case manager through our insurance. It only took one call from her to the wheelchair people and all the stuff was being sent in. she said that she would call me the next day to tell me the status of the paper work. Hopefully the ball can really start rolling now. Thanks Tara for the info! Tara is also lending us the stroller that she recently got because they aren't using it right now. Once again...Tara you're awesome! The one last bump in the road is that they are telling us that they will only pay for either the power chair or the stroller but not both. I think it's ridiculous because all the other kids with the same insurance got both! Dumb they better give us both! It will be really nice for Riley to have this equipment. It will give him much more freedom and the ability to participate in more things. Now just hurray up already!