March 29, 2006 at 08:51 PM EST

March 29, 2006 at 08:51 PM EST
Just a short update today as I am exhausted. Simon had a rough night and that made 3 nights in a row I have not slept so hoping for a winner tonight. Today was ok. They put Simon on a diuretic and are starting to take him off his metadone (pain narcotic that we haven't really thought he needed for at least the last week) as it has the rare side affect of swelling in the brain. Of course we go for the rare stuff. They still are not sure what is causing this and the diuretic will only solve the symptons not the cause. So we search. He is still not keeping food down but I continue to offer ceral and sweet potatoes. Tonight I was suppose to have dinner with Dave and the girls who I miss terribly but our hot water heater broke and so Dave and his nephew are trying to install a new one that Dave had to go buy. Hope it all works out. I can't wait to go home tomorrow night and see the girls and sleep in our bed. Our immunologist from the NIH is here tomorrow so I look forward to that visit and more info on the NEMO and what to expect. Well have a good night and I will let you know what the VNTRS are tomorrow. Do the Cell Dance extra hard tonight. Love and prayers Tracy and David