Fabulous Fourth

Mike decided on Friday evening that we should head to the mountains for the 4th of July. It was a very last minute trip but we had a fabulous time. We headed up to Asheville, NC for the weekend. It's a beautiful part of the country and it was such an unexpected treat to escape the heat for a few days. We drove up to the mountains and spent a few hours in the Pisgah National Forest. We stayed in an adorable little cabin (thanks to a last minute cancellation) outside of Asheville. We toured the beautiful Biltmore Estate.

We do try and travel and experience new things together often as a family. People often comment that they are so impressed that we're able to travel so often. I'm not quite sure how to interpret these comments. Mike and I have experienced many separations during our relationship so we do value the time that we get to spend together and try not to take it for granted. We also are never sure how much longer we'll be able to do this sort of thing given Olivia's health and mobility so we try to make the most of the time that we have. However I don't want you to think this is easy. Our kids are relatively easy travelers but every trip has it's highs and lows. It's not always a walk in the park. So I'll share just a few of the lows from this trip before I get to the good stuff:

--We had the perfect spot to view the fireworks from a cafe patio but when the fireworks were late starting Mike and I worried that we were missing them and started walking to find a better spot and ended up watching them from the sidewalk under a tree

--Olivia had a diaper leak/poop issue that I wasn't aware of until AFTER I'd picked her up from the stroller to cuddle with her during the fireworks...yuck

--Olivia bit Peter on the nose, really hard, enough to make him bleed. Peter responded by biting her on the arm, hard enough to leave a huge bruise

--We brought a special bottle of wine (bottled by my parents from grapes grown on their ranch) but were not able to enjoy it because I broke it trying to unload the car

--Five minutes into our Biltmore tour I wanted to quit, everyone had their earphones in for their audio tour and were moving 100 times slower than those of us who had not shelled out the extra $10 for the audio tour, it was hot, and crowded, and Peter was heavy and I had a mini-meltdown of my own

--On Monday night Olivia refused to sleep, she was exhausted and fell right asleep around 8:30 but then woke up at 9:30 and refused to go back to sleep until well after 1 am. We were in a one room cabin so that meant that no one was able to get any sleep and Olivia was up again at 7 am

So enough complaining, onto the good stuff. We stopped as the Pisgah National Forest for a quick hike. We wanted to see Sliding Rock. My mom visited Sliding Rock as a kid and told us how neat it was. It's a naturally occurring 60-foot waterslide. I think I surprised Mike with my willingness to try it. He put one foot in water and declared that it was too cold and the kids wouldn't like it. I announced that Peter and I were going to give it a try. It was a little crowded and there was a bit of a line. By the time that Peter and I got near the end of the line Mike had changed his mind so the first time we all went down together. Peter loved it! Olivia enjoyed the slide down but didn't like the plunge at the end very much.

Here's a picture from up above looking down on the sliding rock. It doesn't look steep at all but once you're sliding it does seem to go pretty fast.

Mike and Peter


More of Mike and Peter. They went down at least 4 or 5 times together.


Here's a video of Mike and Peter sliding down. The first part is a little shaky but it gets better at the end. You can also clearly hear me saying "oh my God" as Peter goes under at the end. There were lifeguards and Peter had a life jacket on but it was still a bit too much for me to watch.



We backpacked on our short hike to and from the Sliding rock. The kids enjoyed the ride!


We stayed in an adorable cottage. It was a very last minute trip so we're lucky that there was a cancellation.





We headed into Asheville for ice cream and fireworks. Olivia and Mike shared a milkshake.





We spent the 4th touring the Biltmore Estate. It was amazing. I still can't even fathom that it was someone's home! The Biltmore is not very accessible so we backpacked. Mike is a super stud and could have carried Olivia for miles. I am very glad that I had the lighter child!


I couldn't resist tasting a grape, Peter tried one too! They were pretty sour.

There are 101 bedrooms and 43 bathrooms.





Biltmore House is enormous!

Olivia making a wish!



After our tour Peter was exhausted (I'm not sure why since I carried him the entire time). Peter slept through lunch in my lap. It was one of those moments I'll treasure! When Peter was sleeping I could still see the baby boy, all his sweet infant features. My baby boy is growing up so fast.



We rounded out the weekend with sparklers and bubbles at our cabin.





We hope that you had a fabulous 4th! I know we did!

TWO YEARS......

We are a few short days away from the two year anniversary of Olivia's transplant. This is such an emotionally charged time for me. Her birthday is just around the corner as well.

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.

Splash Park

I recently discovered a splash park just minutes from Olivia's Speech/Physical/Occupational Therapists office.

It was a little crowded today.








Peter had the time of his life! He was a little shy at first but within minutes he was dancing, running, jumping, and playing with the other kids. Olivia seemed terrified. She didn't want to go near the water. I'm not sure if she was afraid of the water, or the kids. She was enjoyed watching the other kids play and was perfectly content to sit with me on our bench.

It was a frustrating experience for me. It was so bittersweet. I loved that Peter had so much fun but it so sad that Olivia wasn't able to share in the enjoyment.

Polishing the Pearly Whites

Have I mentioned how much I love our dentist here? I especially appreciate their evening and Saturday hours! Mike and I took the kids for their 6 month check ups a couple weekends ago. Olivia was up first and she was such a champ! Olivia has a "happy, healthy mouth" according to the dentist. I'm relieved we were able to get through the entire exam--brushing, flossing, cleaning, polishing, and fluoride treatment without any biting! As Olivia gets older it is likely that she'll have to be sedated for dental work so I am thrilled that we're able to get through cleanings without issues at this point.




Peter was AWESOME! The hygienist and the dentist both said that Peter was the most well behaved 2 year old patient they'd ever had. Proud Mama! I'm sure it helped that Peter got to choose a cartoon episode (The Backyardigans), he got to wear earphones, and he got to pick out a cool pair of shades.