Ammon Update

Ammon continues to do well at home. Every time he goes to bed he gets a half smile and looks around, like this is my bed. I was nervous this week, with a new oral chemo medication, that he might not do so good, but he seemed pretty normal. He still has nights where he wakes up and cries, so I usually end up lying next to him and rubbing his arm or stomach. We think either the bipap or the chemo is causing a lot of gas in his stomach, which we will "vent"-open up his gtube to let air escape-quite frequently. Yesterday, the kids had him smiling and yelling on the couch while they rubbed his head and said "fuzzy head". He is finally starting to grab more, move his legs and do a half body roll-more like a twist. I was excited when I noticed today, while we played on the floor that he was doing this half twist until I was reminded how bad that would be for him to roll over with all his tubes hanging out. That is why we never got a GJ tube in the first place, I knew he would roll around too much. Even though it still makes me sad that he can't move a lot or bear weight, I guess it has been good for his recovery to be still.

We were able to get rid of his 2am med(hooray), his phosphorus levels went back to normal. Tomorrow is another Chemo appointment and on Thursday I get to take him to get his new gait trainer. I started the process at the beginning of the summer to get this new walker. He outgrew the one we had. It's a process to make appointments, have the insurance approve, get measured, custom order it, and then wait for it to be made and then make another appointment to pick it up and adjust it. When they called me a few weeks ago saying it was finally ready, I tried not to cry on the phone to tell them we were excited, we had been waiting almost 8 months, but he has changed, he can't stand or walk anymore. It's not a waste, it will work as a stander and help him slowly regain his strength and hopefully by the time the snow melts in the spring, he will be out cruising the sidewalks again.