Passing Time

Not much to report...I sometimes feel like I'm in the movie Groundhog Day. We do the same thing every day.
8:00 make myself and Jonas wake up
8:00-8:30 prepare for treatments and Jonas has a little alone time in his bed
8:30-9:00 CP/Cough Assist/suction
9:00-10:00 PT on Wed. or playtime
10:00-10:30 Feed Jonas
10:30-11:00 Watch Tigger and Pooh
11:00-11:30 Bath Time :)
11:30-1:30 Nap
1:30- 2:00 Finish feeding Jonas (what it would be like to eat while you sleep)
2:00-4:00 OT on Fri. or Play,watch movie, go on walk, find something to entertain
4:00-4:30 Feed Jonas
4:30-6:30 Nap
6:30-7:00 Starting to run out of energy and try to entertain Jonas
7:00-7:30 Feed Jonas
7:30-9:00 Let Whit try to entertain Jonas :)
9:00-9:30 Hook Jonas up to pump, Cough Assist/suction and then go to bed!

We do this every day. Good thing I was already use to planning out every minute of the day at school. I know that all moms get into a routine. I'm not that different. I just wish that Jonas had someone else to look at all day long. I feel bad for the kid sometimes. I don't feel sorry for myself, though. Yea, it's hard at times and some days I think that I might go insane being at home everyday all day long. But then I start to think about when I might not get to do this anymore and it almost immediately gives me strength. I love my little boy!!!!
The progression of the disease is hitting me hard as I think about all the little signs I see in Jonas that indicate it's happening. We had an emergency pull out of the tub(soap in hair) to suck and cough him. He was a little grey in coloring. He also spit up on Sun.(which is something that he is not supposed to be able to do because of his Nissen surgery. We were blessed not to have him aspirate any of it. His GI tract is slowing down. He is on a laxative now to help keep him regular. Lately he just can not seem to keep his secrections under control.
With all that is going down, I have to remember what he can do. I am so grateful for all that he can do and I still have a little smile I get occasionally. (which I think is something he does by choice, stinker. I think he is more like his cousin Max. He would hardly give me any smiles.)
I try to squeeze him and hold him and kiss him every chance I get. We do a lot of sitting and singing together and just being. One of these pictures Jonas is sitting(not dancing this time)and listening to his music. He likes to watch the IPod and "see" the music.
As you can tell by the long novel. I myself am trying to pass the time(However nap time is precious)