Today was an okay day. Aidan has had some episodes that I would consider storms and some that I would just call agitation. He gets upset when he has a dirty diaper and when his bladder is full (because he's not able to empty completely). He is usually able to calm himself in a short amount of time.
This morning he was really relaxed after having his diaper changed. His nurse had to give him an extra dose of one of the medications for the storming (not a sedative). It allowed him to calm down enough that he was able to fall asleep and his muscles actually relaxed enough for them to reposition him and change his diaper without getting upset.
Russell, mom and I went to a support group meeting at the hospital that our neurologist invited us to. The group is targeted toward autistic children, but also deals with other children with neurological problems. It was very interesting.
When we got back to see Aidan he was upset, but his trach extension had come off and his trach was completely covered so he wasn't getting enough air. He was very upset and once I got the extension put back on and got his neck dried off he calmed down and stared at Nana for a long time. The nurse said that he actually peed a lot on his own, which is great!
He's been much more alert and looks around, but he is not tracking objects. I don't know that he focuses on things, but he looks around. He really likes his fan we put in his room. It helps calm him down, but only if it's blowing on him (he's exactly like me). He calms down when his favorite cartoons are on TV, so I know he recognizes certain things. He was also swallowing a lot more today, and he yawned several times, and he moved his mouth kind of like he was chewing. He even made a cute little sound when he was yawning.
We're making baby steps... teeny, tiny baby steps. But I'm praising God for every one of them.
There is no family meeting this week, but we hope to talk with Dr. Black tomorrow since we didn't get to talk to him at all today.
Please continue to pray for Aidan, and please focus on calming the storms, his muscles relaxing so that it is easier to do therapies, his bladder continuing to work on it's own, and his continued progress however slow it may be.