Lots of news--some good, some bad

Today's clinic appointment was long but it went well. It turns out that there are a lot of new patients starting their pre-transplant work up and around this time of year they tend to have lots of annual check-ups, there are also a lot of kids that were recently released the result is that the clinic is packed. We have always had early appointments. Since Olivia is an early riser we would get the first appointment of the day at 9am. Today we arrived at 9am to find that all the rooms were full. One of the nurses was telling me that when she got there at 7:20 there were already 4 families waiting. Interesting since the doctors usually don't arrive until around 9:30 or 10:00, I think they might have had really long days today in clinic. We arrived at 9am but we didn't leave until after 12:30pm, we spent that time waiting for the doctors. It's a long time to spend in a tiny exam room. We received some really good news at clinic today. Olivia doesn't have C. diff and the cultures of her stool have all come back negative. She isn't vomiting anymore. The chance that it is Graft vs. Host is unlikely right now. Today we were able to discontinue one of her antibiotics and one of her blood pressure medicines. Olivia has lost about 1 pound since Monday's appointment. We're hoping that she'll be able to maintain her current weight or gain a little weight by Friday. We have to go into the clinic on Friday for a weight and blood pressure check and if all is well we won't have to go back to clinic until November 18th! This is fantastic news but we're a little apprehensive about getting really excited about it. We're focusing on taking one day at a time.

Olivia and I returned home from clinic to find a very unhappy Peter waiting for us. Apparently Peter had been vomiting and having diarrhea all day. Hmmm, sounds familiar, perhaps Peter caught something from Olivia? I didn't want to take any chances so I left Olivia here to have lunch and take a nap while I headed to the pediatrician's office with Peter. I really like his pediatrician here. I picked him from a list of providers approved by our insurance company. He had worked in the blood and bone marrow transplant unit at the University of North Carolina Chapel Hill and he's familiar with MPS and Sanfilippo Syndrome. He understood my concern given Olivia's compromised immune system he thoroughly examined Peter. He did take a stool sample from Peter and will try and culture that but he thinks that Peter likely has a 24 hour stomach virus. Peter hasn't thrown up since early this afternoon and his diarrhea is getting better. He is still pretty fussy but hopefully he'll start to feel better after a good night's sleep. Perhaps Olivia had the same virus but with her compromised immune system it is taking a little longer than 24 hours to resolve itself. I don't know if we'll ever really figure out exactly what is going on. I just hope everyone is feeling better tomorrow!