I'm not even sure how to start this update...but by saying that it was extremely long day with not a very happy ending! Read on.
Tuesday morning was slow, we played with Ally and Ashley up until about 10:30 a.m. Then, Jill and I met with Bev from transplant to go over the small bowel procedure and everything that can be expected. The class was great! Not only did we learn much more about the bowel, but we had the experience to see photos of kids from the time they were transplanted up to 12 years later. For the first time, we felt as if we were not the only ones going through this. Seeing the end results of determined childeren survive such obstacles was amazing! It proved to us that Ally will do this, and be one of those stories of inspiration.
After the 2 hours of class we went back to Ally, had some lunch, then spoke with Deb a behavorial social worker. She was there to find out more about Ally and our family and to offer any services of help we may need during our stay. Then at about 5 p.m. 10 doctors entered the room to discuss a plan for Ally.
Plan is that they are not completely convienced that Ally needs a small bowel transplant. They feel that with a healthy liver (as of now), plenty of bowel length, that we just may have never had a real chance at feeding her and pushing her gut to the limit because of all our set backs. While this is somewhat true, we do know however that when Ally does feed, food passes through quickly. So when we told them about how she has not gained any weight this year, they then recommended us for a bowel motility study. The problem Jill and I think is that her gut while it has great length, it just doesn't move food through. We agreed for the motility test. However, the test can only be performed in Columbus, Ohio. So we are planning in a few weeks to maybe take a trip there.
As for any other things done to Ally today, nothing happened. Just alot of talking and planning. Tomorrow will not be such a good day tfor Ally. She will have an ND tube placed down her nose into her bowel, and an upper GI will be performed. This most likely will give them a better understanding of her motility issues.
So stay tuned. Sorry for being so brief but its late, I'm exhausted, and the rest of the story will explain more.
As for the rest of the night, it was not so good. We did however get a visit by a friend of a friend named Lynn. She was so nice. We decided to go out for dinner with her, and we found this small restaurant with great food and had a good time. That was until we walked out to our car. As I approached the car I noticed the rear window had a hole in it. Sure enough our car was broken into! Someone stole Ashley's portable DVD player off the back of the drivers seat. I tell you if this black cloud would ever leave us for a second it would be a miracle. That was all that was stolen. Of course Ashley was very upset, and did not understand why someone would do this. Of course we were just happy no one was hurt or involved. The cops came took report, and we drove back to the hotel with no window. Cold ride for everyone in the back :)
Ashley and the others just went to bed, and I may not have a chance in the morining to update. I will be busy calling the insurance company, finding someone to fix the window, buy Ahsley a DVD before we leave to come home, worry about Ally and all her tests, and on top of it we are expected to have a huge ice and snow storm tomorrow. Sounds like a great day, huh?
Stayed tuned. This trip is really testing the limits of our strength, and abilities to handle all this stress. Someone really likes to see just how much our family can handle at one time. Good night!!!
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