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Wednesday, June 20, 2007

Ari's first and second treatments in the chamber went well. She sat through both sessions with no problems. She will go again tomorrow. Sarah has had ear problems since she was a child, so I have been going in with Ari. It's fairly simple to explain how it works. You just sit in the submarine looking thing on Dr Murray's webpage and watch tv, read, relax, etc. The pressure climbs slowly to whatever the Dr's goal is. Today, her second treatment, it reached 1.8, which is approximately equivalent to 33 feet under sea (so i'm told). The feeling is not a pleasant one at first, but today was much better than yesterday. My ears wouldn't pop yesterday, and so it hurt a little. Today they were much better. Ari's ears appear to be fine, since she sleeps right through it with no fussing or anything. The oxygen doesn't actually fill the whole tank with 100% Oxygen, but Ari wears this half bubble thing over her head and torso, and it is fed into the bubble at 100%. I'm very happy that she is doing so well in it. ' Her GI problems are still there, although we think we may have been mis-diagnosing the cause of her pain. While she does have slow bowels, she does not seem to be constipated. We can give her a full feeding of baby food (apple sauce, pears, peaches) and within half hour to an hour we are changing a diaper. But processing of food does slow down at times, and she does get uncomfortable almost every time we feed her. It is entirely possible that her tone is a large part of the problem, and her brain is another big part. She has been a bear the last couple days, just cranky and frustrated, like she is always trying to go to the bathroom, but it may be that her brain is telling her she needs to go. Or she could be getting cramps, abdominal and all over her body. We just don't know, but she is definitely having problems. Her GI appointment is for Monday in Tampa, so maybe we will get some answers. Another possibility we are wondering is if the position of where her G tube is or internal workings around where it is might be messed up. Sure would be nice to know. Last night she cried and screamed almost all night, and about an hour after she got to sleep the 6am alarm went off to give her her meds. Much more of this and we may all go insane. Hehe, needless to say, we sure do miss our nurses at Brooks right now. We are currently staying at the Ronald McDonald house, but have been informed that our family is too large to stay here. Apparently it has to do with the fire code. So when we come back next week, we have to either find a hotel or apartment, or ditch a kid. It's so ironic to us how much we enjoy our large family and how inconvenient it can be to other folks. But it's a crude reminder of our society; the idea that children are an inconvenience and the idea that a family should just be 2 kids max, for surely any more than that and the parents must be crazy, or will be. We have lots of friends and family willing to help watch the kids while we keep going, but we don't like to break the kids up too much. They can be trying at times, but we certainly don't want to allow this trial to split us up so that the kids feel like they have been put on the back burner. So we will see as we go forward, and maybe we will need to do so anyway. We may be on track to get therapy scheduled up here which will save on the 5 hour drive times and tanks of gas. So, if all goes well, and we expect it will, we may be up here for some time still. Of course we would come home on the weekends and empty days. Love to all.

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