Today marks the 9 month anniversary of Olivia's transplant. The 9 month post-transplant studies were scheduled for today so I arranged to have a babysitter watch Peter while Olivia and I drove to Duke. They drew tons of blood for Olivia's labs today, they're checking for all sorts of things from her immune function to her chimerism (which tells us if she's donor cells or original cells). We should get the results at our next appointment. Our first stop of the day was pulmonary function testing. Olivia did fantastic, she didn't blow into the mask as we were hoping but she did scream into it so that's close enough. Her results were 20% better than they were at the 6 month mark. Our second stop was radiology for an echo cardiogram. Olivia's heart function looks good, we'll review the full report at our next appointment. We headed back up to clinic where Dr. Paul and Andre were both impressed with how well Olivia is doing. I was so excited to share with them that Olivia's poop is normal. She's never hasn't had normal poop in years, from about 18 months on Olivia always had really soft stools (as is common for kids with Samilippo syndrome) so normal poop is really exciting to us! Olivia's regular labs look great. Her skin looks good. She does have mild eczema but that's unrelated to the transplant. Olivia's liver has shrunk and it's now well within normal range. The last stop on our schedule was an EEG. I was a little concerned about what sort of information they were looking to get from the EEG. Olivia had an EEG as part of the 6 month studies just a few months ago. They said they were looking for any type of seizure activity (which is common in kids with Sanfilippo syndrome). Olivia has not ever had a seizure and the likelihood that she would start to develop seizures at this point post-transplant is slim. They decided to hold off on the EEG for a few more months and do one as part of the 12 month studies. I was thrilled! The plan at this point is for us to return to Duke on May 12th, if things are well at that point then we won't have to return to Duke until JUNE 12th!!!!
After Andre told Olivia he wouldn't see her as often she got sad and said she wanted to come back. I caught her mid-sentence.
To celebrate Olivia and I went to Chipolte for a late lunch. The restaurant is very near the hospital and it's normally packed for lunch by by 2pm it's completely empty. Olivia and I enjoyed the beautiful weather and sat outside (in the shade of course). My burrito bowl was delicious and Olivia enjoyed her chips and guacamole. It was really nice to be able to spend some time with her one-on-one.
No comments:
Post a Comment