an update

I apologize for not updating this sooner. Aidan started his therapies yesterday, although it was mostly assessments, they did do some stretches and the like. The physical therapist got a wheelchair for him to use (it needs some more adjusting, but will work), and Russ took him for a ride around the floor. There happened to be some reps here from a local company that makes wheelchairs and they had a new prototype that the therapist was excited for Aidan to try because it can grow with him and is adjustable to accommodate the flexibility of Aidan's legs right now and as he gains more range.

Different things have been mentioned to help regain the range of his knees and feet. Casts and splints and even botox. They're going to try putting him in a stander to help with this feet as well. They showed us how to do some of the stretches for his legs today too.

I think we're going to take Aidan down to the cafeteria for dinner to get him out of the room for a little bit. And then, he's going to get a REAL bath. Now, I just need to cut his hair. It's gotten SO long! With him laying so much the back has gotten pretty matted. Cutting it would just make it easier and much cooler for him.

I'm going back home tomorrow to be with Evan. Russell is going to stay here, and then we'll try to bring Evan up here Monday to see Aidan. We have to have the first sibling visit arranged with the staff for some reason though.

On sort of a bad note, Aidan had some storms yesterday evening and last night. He didn't sleep very well and neither did I. It is difficult to watch him have storms, but even more so when he really hadn't had any since Tuesday that lasted this long. He's had a few little ones but has been able to calm himself quickly.

The picture at the top is of Aidan on Thursday morning before we left the hospital. The other is of him sitting/sleeping in the Tumbleform seat on Wednesday. (He looks like my normal little Aidan in that pictures minus the trach and trach collar).

I'm still trying to deal with missing Aidan how he was before. It's hard, that's all I can say. I would love to have him run up to me and give me one of his hugs and his little kisses. I can only pray that one day he'll be able to do that again.

I guess I'll end here for now. We won't have any therapy tomorrow, but Russ and I will work with him on stretching and sitting him up for a little bit. I'm sure his little muscles and joints are sore. I'm hoping that a warm bath will help too.

Thanks for the continued prayers. We've gotten this far with them.

~Erin