Sorry it's been a while. Time just gets away from me sometimes. I don't have time to post while I am at work and when I am home with Theo, I don't want to leave him to spend time at the computer.
Not much is going on right now. We did get a futon over the weekend which is so nice. Jamie has a friend who is living in England and her boyfriend is here. They are in the process of getting rid of things so that he can move there with her and after reading the post where I mentioned it, she offered us their futon. We picked it up on Saturday and I got a new mattress and cover. This was great because I could afford to get a much nicer mattress than if we had purchased the whole thing new. Thanks so much to Gemma and Corey for giving us the futon. It has really made staying downstairs with Theo at night so much more comfortable.
Theo has continued to have some difficulty with his feedings and at times when we give his medications--although only with the phenobarbitol and the docusate. He gags and sometimes throws up during feeding or right after his meds are given. He also gags a lot when he is the least bit agitated so we have to slow his feedings down quite a bit and turn the feeder off when he either throws up or seems like he is feeling uncomfortable. So there have been days when he is beign fed for very long periods and times when he hasn't gotten all his food because he can't tolerate it. Or we wait for him to be asleep to feed him. It never happens when he is asleep because he is so relaxed.
He has gotten better with the strange breathing pattern, which I think I mentioned earlier, but still does it occasionally. Our nurse called the doctors last Thursday when she was here--we made a tape of it at it's worst and played it for her. It sounds like he is struggling for breath or like he is having an asthma attack, but there is nothing wrong wih his lungs. Like the gagging thing, it only happens when he is upset and never when he is sleeping. It seems like an airway obstruction that happens when he is agitated--or maybe he gets agitated because of the breathing problem. He has done it less this past week and has seemed a little more calm overall. The doctors said that if he starts doing it more frequently, including in his sleep, to bring him in, but until then, to continue to monitor.
Not much else to report, I have been up and down, as usual. Halloween was really hard. I didn't think it was a big deal, I got all the way through the day at work with all the kids I work with dressed up and having a Halloween party, and had no problem. On the way home though, driving down the street, I saw all the little kids in their costumes holding their parents hands and their treat bags, tromping up steps and dancing down sidewalks and just started to cry. I actually bought Theo a costume in August before this ever happened--a little black sweatsuit with a skeleton printed on the suit, but I left it in the closet. I didn't want to get him dressed up, I just couldn't bear it, plus he hates to have anything pulled over his head.
I heard on the radio the other day part of a reading of a work by C.S. Lewis, A Grief Observed, written after the death of his wife, and in it he says, "nobody told me grief felt so much like fear" and it does. The same sinking feeling in your stomach, the butterflies, the uneasy, queasy feeling in your gut, uncertainty. It is the very same physical feeling. Especially the feeling in your belly, that turning, anxious feeling. Except with fear, there is a something to be afraid of, a thing your fear is directed toward and you know you are afraid, and eventually the fear is resolved. That feeling in the pit of your stomach that comes with sudden fear generally goes away and you feel relief rush over you that the threat is gone. Grief is that same feeling, but it doesn't go away, there is nothing that can take it away or bring relief. When I heard the reading of that excerpt, I thought, "He is exactly right. It does feel like that".
Anyway--I will try not to go so long in between posts. I know so many of you are still praying for us and sending good thoughts and I continue to be grateful.