Behind Again

This blog is getting terribly neglected these days. Junior is still struggling with his asthma but the last couple days have been much better. He has even made it out on a bike ride two days in a row.
Now the wind is kicking up so I am hearing some wheezes.
Ready to roll
He started regular therapy sessions on Tuesday and loved it. His therapist is great with him and he works hard with her. He really liked using the walker and treadmill and I was thrilled to see him trying so hard. He does not take steps on his own but the therapist was pleased that she could feel his muscles activating with the motion. This was his very first session.
We also discovered that he can sit for far longer then we thought. His balance is the big issue. So his therapy homework is to work on sitting as often as possible. Some with his back brace but a lot without it which is really hard work. Last night we got out a regular chair and then set up his ipad so it was at eye level for him. Angry Birds was the game choice and we played for over half an hour while he sat in the chair. I was surprised that he sat for so long and though he would drop his head for a few seconds would pick it right back up. I did have to touch his shoulder a few times to get him back to midline when he started to tip. Also a couple times he started to tip forward and needed some help to correct. But I was so excited to see him actually stiffen his arms to correct on his own a couple times. This is HUGE for a child with pretty much no movement in their arms. To get his arms to both stiffen and push at the same time and timed to prevent him tipping over is truly amazing and took some serious focus on his part.
His Ipad was a big help in keeping focused and working to keep that head up and trunk muscles working.
Here he is working hard on his sitting and playing Angry Birds.
Even with an ipad we can't be prepared for every situation as I learned this afternoon.
Junior was having a bit of a meltdown and was in tears. I asked if he hurt and got told no. With his ipad he was telling me "I am upset, I am upset" but that was it. Of his many choices for what is upsetting him none of them were what he wanted. Not being able to tell me what was wrong was making him more and more upset. At least until I happened to catch some movement out of the corner of my eye. I looked up and there was a cat outside our window. Junior is terrified of cats and can't stand them to be anywhere near him. As soon as I scared it away and assured him it could not come in the window he started giggling and was totally fine. I guess "go away cat" needs to be programed on his ipad.
I had to laugh especially when I think about how a vision therapist tried to tell me he could only see close up(of course she only spent a half hour with him and he was not impressed with her so wasn't exactly cooperative).

Asthma

Wow, it has been awhile since my last post. Spring time is always tough but this year it has been really bad. Junior's asthma has changed so we are not only having lots of congestion but also episodes with broncho spasms and airway constriction. Some scary moments but our wonderful pulmonologist office is helping us figure things out and come up with a plan of action. I am not having much time for blogging aside from Junior's regular blog so feel free to jump over there for more specifics about what is going on with us.

I will share something new we are doing during activities with the ipad. Junior uses the ipad with eye gaze so during activities there are times when I am engaged with helping him and don't notice that he is trying to tell me something on his ipad. Eventually we hope to be able to have him use his head switch with his communication program but until it becomes switch accessible(we are told it is in the works, also other apps are being made switch accessible) this avoids frustration and keeps things going smoothly during activities. We set up his ipad on one side and then his head switch on the other. His head switch is connected to a Super Talker(could also use a big mac type switch) on which I have recorded a message. The message depends on the activity. If we are coloring or painting I will put "I need another color please" if it is some other activity I use something like "help me please". He can use his switch to let me know he needs me to look at his ipad so he can show me what he wants.
Poor guy wasn't feeling well so we barely got started on his activity and he fell asleep.

Sick

As you can tell we have been missing in action the past few weeks. Junior has been sick and then his asthma got very bad. Today is going better so if the weather behaves I hope to be back to full speed in a few days.

For a quick ipad update. I am so glad to have the ipad during these times of illness. Junior can now tell me what hurts and how he feels and be specific.
I am continuing to notice far more verbalization since he started to use the ipad. A larger variety of sounds and he is attempting more words. Last night he wanted the curtain open in his room and instead of his usual HIIEE he said my name exactly right "Heidi" with every sound. He is also verbalizing around other people which is something he has not often done. I had one of his doctors recently tell me they were so impressed at how well he is communicating. This was a doc that has seen Junior for nearly 10 years but Junior had not shown his abilities to. I just love that he is letting other people know what he is capable of. In fact he is determined to get other people to understand him which again is not something he really even cared about before.
Loving it.