Back in the Saddle Again

Sorry for the lack of posts. Password confusion on my part

When last we left on Friday motility test results:

W has blockage where the stomach and small intestine meet, thus he would eat and throw up as very little was being passed through.

Next procedure was an upper GI. Barium etc and they follow that through his system. From that found out the first 20 cm of his small intestine is smaller than what it should be with a couple of places being very constricted. Not sure what is causing this: HLH still present, scar tissue from it having been there, ???. Result- they put in an NJ tube(nose tube) and snaked it into his small intestine so he could be fed formula and get human nourishment. This seems to be working. He did throw up yesterday after he woke up with a temp. Of 102, but it was not much and just bile. They ordered a CT scan for 3:00 yesterday and we await the results. With all the pictures the doc's will compare all and see what's up at this point. That's about it medically

Saturday was the best day he has had since the start of his illness. He was up, engaged, talking a lot, did laps 3 times, and was a close to our Willem as we have seen. He was playing his DS game and had cartoons on when I asked if I could switch the channel and check on the Michigan game score (it was 37-0)and he told me the TV was really cool and all I had to do was "tell it what channel I wanted and it would change", so I turned and said 65 and of course nothing happened. I turned to see him laughing his head off " I tricked you Ba". It was a great day.

Sunday when we got there around noon it was more of the same, only he was even more talkative. Our neighbors, the Rays, came down as well with their kids and Willem showed them all around, did a couple more laps showing them the heli pad where we say a helicopter take off on Friday and we were all in the play room having a ball. It was a good day as well. Thence woke up yesterday with the for mentioned fever etc.

That's where he is for now.

Daily We are grateful for all that has happened and is happening. We all can handle adversity by "fixing it" which will not work here, accept and deal with it, OR embrace it and grow from it. We have chosen the latter and realize this is all out of our hands. Willlem's courage and acceptance of his situation has been nothing short of Amazing. He hates the tube in his nose, but now accepts that it is part of his recovery. (he previously pulled it out two times when he was in ICU). He has asked for a pepperoni pizza and a 10 piece McNuggets meal (because he is 10 years old). His level of acceptance is something we all can learn from and emulate.

We are all writing a daily list of things we are grateful for and appreciative of everyday. It has been proven, very strongly, that people who do this daily have a more positive view of the world, are better equipped to handle the daily challenges we all have, and are more satisfied. I challenge you all to do this for 30 days-write them down- and see what happens. I then challenge you all to continue to do so after the 39 days, and "why stop at 5"?

Thanks to you for your support. Willem and the family know you are there and this is very comforting, Take Care