PS

We met another child with TPN (and Omegaven), G tube, short gut while we were in clinic. There is some really interesting piece of news that I have to share in case there is anyone else out there who is baffled by G tube back-ups. This child, Charlie, has to have his G tube vented every morning to let out air and residual gastric contents before being hooked up to feeds or else he will vomit. It is necessary for him that this be done every day. Here I thought that the occasional gastric back-ups that we have with Peter were abnormal and showing us that we were overstressing the bowel. I would cut way back on the feeds or even stop the feeds for a day or two and gradually begin to build him back up in feeds again. (Peter takes his feeds by mouth, but we would still just stop offering anything other than some water). Apparently needing to put the G tube to drainage for a while can be a normal event, and once that drainage is out feeds can be resumed as normal. I wish I had known that before. I am glad to have that understanding now.

By the way, the child I am referring to is the very first child that was put on Omegaven in hopes of living until a liver transplant was found. Omegaven not only decreased the liver damage but quickly got him off the transplant list. He looks wonderful!

Back from Boston, Halloween, Birthday

Opening gifts all by myself this year!


Trick or treat!


Boston Commons... this vaguely looks a little like the cover on
one of the Beatles albums



I am getting behind in the updates. It has been busy around here as you can see by the title of this entry.

We went up to Boston a few weeks ago for another two month check up. Peter was in good form and showed off his increasing strength and speaking skills to everyone who saw him. EVERYONE at CAIR clinic commented on how very good he looks and how strong he is getting. The weight gain and growth are a little disappointing when we look at them on a graph and compare them with what he should be doing. He is behind on the charts as we expected, but he is not following the growth curve properly and that may be an issue of concern. We will investigate that further after the next check up if need be, but meanwhile his elecare is advancing and if the gut is working, that should help with the nutrition.

Peter's results are back from his methionine breath test that he took in June. He has had 4 of these tests now. The first 3 showed declining liver function. They were done in Jan 2007, Aug 2007 when we listed him for transplant, and sometime around Jan 2008. The one from June 2008 shows the function of a normal liver!! This is still a test that is in testing stages itself, with the hopes that it will be a non-invasive test to replace liver biopsy. However, the doctor who runs this test was ecstatic about the results as they certainly seem to correlate with his other labs and how well he is acting.

Then Halloween was here. Peter dressed up and liked it!! I really had my doubts that he would agree to an outfit, but we found one he liked and he wore it, and even the hat that accompanies it. He had a wonderful time outside in the dark. We used the flashlight and talked about the darkness. To try to keep him away from germs he didn't go door to door with the other kids but he didn't care about that anyway. We were out for over an hour, but when we came back to the house he was unhappy because he wanted to go out some more. He finally settled for playing ball in the house in his costume before he had to go to bed.

Peter's birthday is the day after Halloween, All Saints' Day. He is officially three years old now. Just like Halloween, he was much more involved in the holiday this year compared to last year. He tore into the cards and gifts and seemed to understand and enjoy the fact that it was his birthday. He has seen other people celebrate birthdays throughout the year and now it was his turn. We had to light the candles twice for him because he enjoyed them so much. Sadly, no cake for him yet, but like the Halloween candy, he didn't care that we were eating it and he wasn't. Instead, he licked the apple slices and gluten-free pretzels and crackers that were on his tray and was content with that... especially when daddy put the candles in the apples and relit them!