Wednesday, October 17th - ?

So my eyes popped open this morning at 4am. I have no idea why, but when I looked over at Alex I could not tell that he was breathing. When I finally did see his body move with breath, it only seemed he was inhaling. I can't express the terror of that moment. I kept watching and feeling and finally hooked up the pulse ox machine to check out his stats. His blood ox was at 100 (nurse explained this is not so good, since it indicates he is not releasing carbon dioxide) and his heart rate was up more than normal for sleep (this too is bad, since the heart will work extra hard to compensate for the poor breathing). I tried to get him to wake up so I could adjust his position (for his airways) and he did not respond until I finally just moved his body. (Another bad sign). So I went in and got Steve and we just stayed with Alex for a long time. I finally had to leave the bed and ended up on the sofa with single tears running down my cheek.

Steve came and joined me for a while and we talked about how horrific this is and this is must be what they meant by "it will be very hard towards the end." Yesterday was very hard on me and last night did not ease any of my discomfort. This morning Alex decided he wanted to get up and go to PT (to see Kerry) and so we headed off. He had a great time with Kerry and I videotaped the whole thing. He loved kicking her down and then swinging and kicking large bolsters over on me! There were even bugs on top of the cylinders just to add to his pleasure. He took a few steps and then we headed home.

After that, I went to my hair appointment and have a surprise for you all!! I'll post pics soon! Anyway, while I was gone, Alex had a wonderful visit with some of our friends who kindly brought us yummy Indian food. Everyone but Linda was resting when I got home. Steve and Alex spent a lot of time on the Wii this evening playing some fun games. Alex is now sleeping and Steve and I plan to both be in bed with him tonight.

For the last two evenings, Alex has told Steve "Daddy, if you have any bad dreams just squeeze my hand." This with the question Monday at Mac Grill tells me Alex is quite aware of his changing body. Steve and I have discussed whether or not we should tell him that we know his body is changing and that he will not have to fight much longer. That we love him and our warmth and love will always be with him and his with us. I want to tell him he is the bravest boy I have ever known (wouldn't be the first time) and that being his mom is my greatest, most fulfilling accomplishment of my life (Zoe is too, for the record). As I type this I just finished a phone call with Alex's play therapist. She concurs with our thoughts. I'm sure much more thought will be given to this in the very near future.

I'm going to bed now. Pray for our beautiful, strong, courageous boy.

Love and God bless
G