I dread our trips to Boston for Porter's appointments. I can't stand riding in the car for that long. I'm terrible at sleeping anyplace other than my own bed. And, I get anxious about meeting with the liver team because, for the past year, I've had to defend the fact that Porter is a tall, lean little boy.
I am not ungrateful. I give thanks every day for the generosity of Porter's donor and her family, and for the skillful care with which the transplant surgeons changed Porter's life. I appreciate the attention to detail, and concern of our transplant team. I respect them and I know that they are among the best in the world. That is what makes it difficult to openly disagree with them.
Porter was baby-obese before his transplant. Our metabolic team had us fatten him up on purpose because the extra reserves made him safer. Believe it or not there is actually a saying "fat babies with OTC are healthy babies with OTC." So, he was 98th percentile for weight when he received his new liver. He was the only kid on the transplant floor who looked like a linebacker!
During the year after Porter's transplant he grew in height but did not gain weight. He didn't lose weight either, but his growth chart didn't look the way they wanted it to so we had to have more frequent visits and we had to delay what we really wanted to do which was restrict calories to stimulate his appetite and get him eating and off the the G-tube. Even through the end of this summer (14 months after transplant) we were supplementing all of his meals with pureed foods and formula. I know it doesn't seem like a big deal, and there are plenty of families who have bigger challenges than us, but we were frustrated because we really felt that if they'd just give us some time we could get him to eat.
After our appointment in August we had three months and the team's blessing to experiment with the timing of feeds and to decrease the amount of formula we were giving on a daily basis. All we had to do was report his weight to them every two weeks. They really didn't want to see a dip in his growth chart so we had to be on top of it. Finally, we had some breathing room! It took a couple of weeks and Porter's weight did dip a little. I may not have been completely accurate when reporting his weight that first time. However, Porter quickly developed an appetite. For the past couple of weeks we've rarely supplemented his meals with pureed foods. He has been getting 12 oz of formula (4 oz, 3 times/day) and he even gained a bit! We were so hopeful and confident that we purposefully did not pack our blender for this trip.
Our drive down was beautiful. The fall foliage was at its peak most of the way through Vermont. The sun was shining and the sky was a brilliant blue; especially when viewed through my rose colored glasses. Seriously, get some shades with a little pink in them and you'll enjoy the colors even more.
In Woodstock we took a quick detour to one of our favorite nature spots Eshqua Bog (featured earlier in our blog) where we hiked around the leaf covered trails and along the board walk. It was a great place to stretch our legs. From there we headed to West Lebanon, NH where we found a kid-friendly Italian restaurant and we all enjoyed our first meal out as a family.
We arrived at the Bergeron home in Melrose, MA just before dinner time and spent the evening playing, visiting, and enjoying the hospitality of family we don't see enough of. Baby Liam is growing so fast. We all wish we could see them more.
The night was typical with Katie sleeping no problem, Chris sleeping pretty well, and me not really sleeping at all. Porter was the anomaly. He slept hard at first and then was awake around 1:30. He was sort of restless, moving around a lot and trying to get comfortable. He also had a bit of a stuffy nose; no doubt the same virus Katie developed the day before. Finally, around 4:00 am he sat up and said "I'm all done sleeping. I need some lunch." (Ha!)
So, I got up and squeezed a fruit and granola pouch into some water and gave him that through his g-tube. He was asleep 15 minutes later. Duh.
After a quick goodbye to Lindsay and Liam we made our way to BCH. Where we did a quick blood draw and then met with our team. They were impressed with Porter's progress and happy with his labs. Here is the best news: They said they'll see us in FIVE MONTHS!!!
We wasted no time hitting the road and stopped in Concord for Common Man fast food (don't judge, he's actually eating!) and were home in time to eat dinner, take baths, and get the little people to bed by 7:00. How's that for a parenting mic drop!?
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