Prayers and Peace

Thank you all so much for your prayers and kind words. I didn't sleep well last night and woke up this morning still upset over our appointment at UNC. We had a day full of tests scheduled at Duke and I was dreading the long day. Olivia woke up happy and willingly provided a urine sample for us to bring into the clinic today. She was so proud of herself and I felt our day starting to turn around. Olivia asked for pancakes and bacon for breakfast so we ordered room service and shared breakfast in bed. We headed off to clinic and they drew Olivia's labs and we went over our schedule for the day with the nurse practicioner. There had been some schedule changes so we would be able to get all the tests done today instead of having to spend another night in Durham. I was thrilled, after our long day at UNC I was just ready to get home! We headed down for the echocardiogram. This was Olivia's 3rd echocardiogram (the first was part of her pre-transplant work up, the 2nd was done at the 100 day mark). Olivia was very still, we sang songs. Olivia particularly enjoyed a very intersting version of "Old MacDonald" where she chose to include a random assortment of animals. There were your typical farm animals along with a frog, a tiger, an elephant, and a giraffe. Olivia was so still that the echocardiogram was over very quickly and we were on our way. Our second stop of the day was the chest x-ray. Olivia is such a pro at these that she sat very still all by herself. When she was finished she hopped off the stool, said thank you and asked for a sticker. We headed off to her puliminary function tests. These are difficult as they require Olivia to blow into a mask. We've been working on blowing for years and Olivia still hasn't mastered the concept. She tries so hard but just can't quite get it. Sometimes they can get the test results when she cries but Olivia just wasn't in a crying mood. It looked like Olivia had very poor lung function. I knew that we weren't getting accurate results so as I was holding her I very deliberitly, cautiously, pinched her. I know, send me that mother of the year plaque now. It worked like a charm though and Olivia's lung function numbers shot way up as she let our a loud yelp. We were able to finish the test and since Olivia didn't see me pinch her I guess she forgot the whole thing. She got another sticker and we were on our way. I had to run back to the hotel and pack up and check out before our next appointment. The hotel was great about letting me check out a day early without any notice and we headed back to the hospital. Back in the clinic we got great news from the nurse practicioner. Olivia's labs looked fantastic! Her echocardiogram actually showed improved function compared to her pre-transplant test. Olivia hadn't had any heart issues prior to transplant and her heart was working perfectly! Her chest x-ray was absolutely normal. There wasn't any reason for Olivia to see a doctor today which will mean that that this is the first week since discharge that Olivia has gone 2 weeks without seeing a doctor. Hopefully this is the first step for us getting down to clinic visits every other week instead of every week. We will discuss all the test results from the 6 month studies with our primary physican next Wednesday. We finished up in clinic and Olivia and I headed down for a picnic lunch of sandwiches from the gift shop. After finishing up lunch we headed up to the EEG lab. Olivia was very well behaved as they hooked her up. They went to start the EEG and Olivia snuggled into my lap and fell asleep. We both actually took a nice little nap and the whole thing was over before we knew it. We left Durham around 2:30 and got back home just after 4pm. It's really nice to be back home.

Olivia had an amazing day, everything seemed to go so smoothly. I know that God was with us every step of the way. I could feel your prayers and well wishes washing over me again and again. I wish that the doctors from UNC had seen Olivia today. In the midst of all of our moving from appointment to appointment I felt peaceful and that in and of itself is a miracle to me.

Here are some pictures of Olivia with her EEG wires. Olivia was very still while they hooked her up and then she happily cuddled up and slept during the test. It was so much easier than her last EEG in October. Peter was with us during that EEG and I had to keep both of them occupied during the test and keep them both from trying to rip off all the carefully placed leads. I'm so glad that my mom was here to watch Peter.