We are now almost to Christmas. I think that we might make it to that day without a hospitalization. I think we might even make it a couple more days until our "Staycation" at the hotel. I'm not superstitious, but I have to fight myself to put that down. Afraid that by thinking it might happen, I'll make it not happen. But I refuse to let such superstitious nonsense rule me. I think I am "rushing" the days until Christmas because if I can somehow make it come "faster" then there will be more chance Joel stays well. Crazy, huh? It's like, "Hurry up Christmas, before Joel gets sick!"
People ask how Joel is, and I continue to be unsure of what to say. While we have stayed amazingly healthy, Joel has not been as happy or active as he was last Dec. to July. He still has had his good moments. In fact, just Saturday he had a great day and was smiley and playful. Generally, though, I think he's just been sleeping more and also had more irritable times during the fall. In the big picture, it is to be expected that at this stage, the changes go downhill.
And then I think back a year, and last fall was very similar to this one. Yet in November he started to snap out of it, and really made a come back. So it's really hard to say exactly how he is. We never know if these changes are permanent. And whenever there is a change for good, I feel great. And whenever there is a change for the worse, I feel lousy. Hard to escape that.
I've also had a much harder time using the CPAP. I'm not sure exactly why, but there have been many nights in the last month where I just couldn't use it. Some of those nights I hooked him up and his O2 was just fine, but 2 or 3 minutes in he became restless, then started screaming. As soon as I took the CPAP off, he was fine. I wonder if it might be related to the water that the audiologist found in his ears about a month ago. The CPAP can cause ear aches, due to the pressure it creates, and I wonder if this is creating more immediate pain at times.
Only time will tell, but an increase in O2 use did not make me feel too happy. I'm hoping our visit to the ENT can help us solve some problems. We'll check out his adnoids again, as well as the water in the ears. Maybe there is something there we can fix.
I've made some new friends in the PBD "world" and that is nice, but it is sad too. Who doesn't like to make a new friend, and yet it is hard to see others face the same struggles you have gone through. I'd like so much to make it easier somehow and all I have to offer is electronic correspondence. I try to remember my own advice to you all, and just pray and be a friend.
Caeden is growing and changing. It's amazing to watch, but I feel a bit sad too. So much of his childhood seems obscured by the medical problems of his brother. I know every mother feels that their child's wee years slip by so fast they miss them, I think it just feels a bit more "slippery" for me. I'm trying to enjoy Caeden more in the good times, too, not just Joel.
Steve is doing ok. His term contract goes until the first week in February. We are hoping by then he can get another year term somewhere. His principal really seems to like him. Steve was in charge of the drama part of the Christmas program this year, with the music teacher in charge of the music, of course (Steve's not very musical, let's just say.) It turned out well, and I think Steve really enjoyed it. He's going to really miss the job, he has really enjoyed this position. It's too bad he can't get another term there, but I don't think there are any more expecting ladies, so now we hope his principal will put in a good word for him somewhere else.
That's about all I have to say for now. Thanks all for your prayers and Christmas wishes, love and support. Remember the sick this Christmas season. It's hard to spend Christmas sick or in the hospital, so remember to visit friends and neighbours who are ill. As long as it's not catching. ;)
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