Last week Olivia and I spent a few days at Duke for her 2 year post-transplant studies. Mike's schedule is pretty hectic now and he wasn't able to take time off to be at Duke with us. Peter was thrilled to be able to go spend some time at "school" and I know that I really enjoyed the girl time that I got to spend with Olivia.
It was strange to be back at Duke. The staff is so familiar and comforting. Everyone from the valet parking guys and the custodians, to the receptionists, nurses and doctors all remember Olivia and couldn't stop talking about how good great she looks. I think it speaks volumes about Duke Medical Center, they staff and employees really are first rate! As happy as I was to be there with Olivia doing well I also was very conscious of the dear friends we've lost over the course of the last year. I stopped trying to understand the reasons or the rationale. Some people seem to breeze through transplant, some don't, sometimes cancer comes back, sometimes it doesn't, sometimes medicine is a science and sometimes there are no explanations, some kids are born with terminal diseases and some are not. They all have a purpose and I know that my life is better for having had the privilege of getting to know them.
The week seemed to breeze by. I remember how difficult all of this was 2 years ago. We started the week with labs and an EEG. My brave girl happily sat and allowed the nurse to draw 15 tubes of blood. She was very still when the inserted the needle, cried a tiny bit when it pinched but was giggling by the 7th tube. Two years ago the process took all week, Olivia's veins kept collapsing and we were all terrified of the blood draw by the end of the week. Such a brave girl! Her lab results are all good. Olivia is still almost 100% donor cells and her immune system is continuing to recover well.
Olivia was a champ during the EEG. I think this was her 4th EEG. Once they got her hooked up she curled up next to me and took a quick nap.
Olivia's EEG is perfectly normal, no sign of any abnormalities. She also had another echo cardiogram. Last year they noticed that there was a minor abnormality with one of the valves no closing completely but this year there's no sign of that and her heart is functioning very well. Olivia's lung function is good although that was her least favorite test. Olivia doesn't understand the concept of taking in a big breath and then blowing it out so for her they get a crying vital capacity. She has to be crying during the test which is never fun.
In our spare time Olivia and I really enjoyed the big-city amenities in Durham. We spent some time shopping. We ate at Chipolte. When I was pregnant with Olivia I worked about 500 feet from Chipolte and I would make my co-workers go at least once a week. I got the same thing every. single. time. I'm surprised Olivia didn't come out of the womb requesting a chicken burrito bowl with extra lettuce. We did manicures and Olivia fell asleep reading tabloids. I can't believe how still she sat so I could paint her nails. I think she enjoyed it, we might have to make this a regular thing :)
Olivia has to be sedated for her MRI. I am able to stay with her the entire time so that makes it a little better. They used a different medication this year to sedate Olivia. Initially it worked well but it took Olivia a long time to wake up.
I'm surprised at how big Olivia looks in this picture, she really is getting to be such a big girl! This was before the MRI, just before she was wheeled back.
After Olivia woke up and was drinking in the recovery area they discharged us to continue on with th rest of our appointments. It's a good thing that we weren't leaving the hospital because by the time we'd gone up to the 4th floor Olivia was having a mild reaction the the anesthesia they used. Her heart rate was very low and she was going in and out of consciousness. It turns out that many kids with metabolic disorders are seeming to have the same sort of reaction. All I know is that we won't be using that medication to sedate Olivia in the future (the medication was "precedex" and if you would like more info about this please contact me directly)
Here's Olivia about 4 hours after her MRI, still looking a little out of it.
The MRI was well worth it. The results show much less brain atrophy when compared to last years. We were not very hopeful that this atrophy was reversible/repairable so we're really excited to see improvement. Olivia will go through her annual cognitive and developmental testing in a few months so we'll see where things are at that point.
Overall Olivia is doing very well medically. Thank you so much for your continued support and prayers.
