Friday, May 18, 2007
It's Friday morning, and I'm heading back to the hospital again. I am praying for a good day for Ari today. Yesterday we tried a different approach to getting her out of bed. We raised her slowly, then eventually got her upright and into the tumble form chair. Her stomach handled this well until she got to therapy, then it was business as usual. After cleaning her up, she did well in her therapies for the rest of the day. The therapist even put her in a walking position, supporting her all the way of course, but Ari did make a move to take a step. She also was asked to hug her mom and dad, and she made a move to do so, raising her arms a bit even. Of course she got a big bear hug for that. Her care team had a meeting yesterday as they do every Thursday to prepare for the weekend and the next week. After this, they presented us with a new option for her feeding tube, which would put it into her intestine instead of her stomach. She would have to be on a continuous feeding this way, but they think it might help with her vomiting. We vetoed this idea much to the dissapointment of the doctors and nurses. We feel we can clean her up after she gets sick and still get a good day of therapy, but the J-tube they wanted to try would restrict her for the whole day. They also presented us with a list of all the improvements they have seen in Ari already, and told us they would like to keep her here for an additional couple weeks, moving her release date to June 13. They feel she is benefitting, as do we, from the care she is receiving, and so we are happy about this as much as we can be. It adds some more twists to our divided family, but we know its best for Ari. Ari was approved for Medicaid and SSI this week, and so we will not have to worry about that part of it anyway. The kids are coming up this weekend, and Sarah will be staying with them as usual. So I'm not sure about the updates, but I know I will push for her to at least post some pics. We have a lot to think about now with the kids getting out of school next week, still trying to operate the painting business from so far away (although God blessed me with the most awesome crew I could have for this trial), and maintaining the home that we aren't at and won't be for quite some time now. Our families have been awesome, absolutely and totally, but to put them and our kids through this for another 4 weeks is going to be hard on everyone. We are trying to come up with an idea to bring them up here after they get out of school, and this is where this new life we are living gets complicated. But we are working on it, and will figure it out. Love to all, and if Sarah doesn't update you all this weekend I'll catch you up Monday assuming I don't have to run back there for a few hours again like I did last week. If so, then I'll get you all caught up Tuesday
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