Tuesday, June 9, 2015

As I was sitting here this morning, thinking back on yesterday, I realized it wasn't really too bad. There was only one real confrontation and that was in the late morning when I asked J to turn off the t.v. when his movie was over. He then decided to change the movie & I caught him trying to find another show on netflix to watch. Because he turned off the show he was watching, he now had to turn off the t.v. He thought he could go back to the original one instead. That is one struggle we will have this summer, I am afraid. He would have the t.v. on all day long if I would let him. But I don't like that. I don't think it is good, or healthy, and I like him to find other things to do. I have allowed a really bad habit to form that I am trying to break now.
Another issue we are trying to work thru with him is nighttime sleeping. I feel so bad for him. He falls asleep pretty fast at night but then is woken up with a headache, and lately, stomach or chest cavity pain. I have taken him into the dr. and we've even been in the ER trying to figure out what is going on. We know his oxygen sats are dropping in the night, which I mentioned in yesterday's post. When I was exchanging his oxygen tanks out at Lincare last night, I was visiting with the lady there & she suggested putting him on oxygen all night long, to see if that helps with the headaches. Technically, because of his sats dropping like they are, he really should be on oxygen all night. We tried last night, but he didn't like the mask elastic around his head so he took it off. I thought I had some nasal canula tubing, but I remember cleaning a while back and getting rid of them because when we tried them before, he hated them. Now he wants to try that instead. So back to Lincare I get to go again today to get that & try. I put the fan in his room for the first time this year because the nights are getting warmer. I think that noise is comforting to him. Once I turned that on, & got him to sleep finally, he slept all night. It is a process. We just try and try again, until we figure out what works. Even then, that may only work for a time, so we try again.
Today is a busy day. He has his HI worker (Habilitative Intervention-for Developmental Disability Services) for 2 1/2 hours, then Camp Hippo from 4-5:20, then Scouts this evening. He does like having things to do. Days that we stay home and don't go anywhere he is constantly asking to go somewhere else. I don't like being on the go so much. It is a balance.
Hopefully today will be another good day, with minimal meltdowns.

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