On the Road

Annaka put hundreds of miles on her car seat this past summer, especially on Interstate 70. In mid-June we went west to visit two sets of friends: one in Morrison, outside of Denver, and the other couple in Colorado Springs. Annaka traveled well to both places, thanks to the portable DVD player on her lap and the portable potty seat below her feet. The biggest challenge, as always, was feeding her and making sure she drank at least forty ounces of fluid.  (The antirejection medicine she takes twice a day is rough on her kidneys, which is why she has to drink so much and also why we, unsurprisingly, drive around with a practice toilet in our car.)

Later in June we went back on the same road, this time heading east. Annaka made it all the way to Pittsburgh in one day, arriving mid-afternoon with plenty of time to enjoy the hotel pool. The next morning we drove a few miles up the street to the Children’s Hospital for her annual checkup. She put on a brave face for a lengthier-than-usual blood draw (they needed plenty of fluid for multiple tests) and also tolerated over an hour of doctor visits from various specialists. Her lab results came back good and her doctors continue to be happy about her overall progress.

She enjoyed other basic warm weather traditions--swim lessons, slide climbing, baseball and softball watching-- but one of the best summertime memories is what we avoided, which was spending a single night in the hospital! It seems we spent half the summer of 2016 in St. Louis as her liver slowly failed, and in 2017 and 2018 we were admitted so she could battle various infections. This year, though, thankfully, we’ve been spared such a trip, although she does like to spend time playing doctor. (Her accident-prone Paw Patrol figures have gone through hundreds of Band-Aids these past few months, and she has recently conjured up a game where she has to surgically remove a three foot long plush snake from your belly.)

Although she enjoyed about a month of morning preschool last spring, this year she’s attending  four-days a week in the afternoon and even goes to a morning preschool on Mondays and Wednesday. Logistically it’s a challenge--for her, for everyone--particularly when it comes to getting her the needed fluid each and every day and for keeping her safe from her myriad food allergies. (Thanks once again to the grandmas for making such a schedule possible and for her teachers for keeping her safe.) She loves school, though; she loves her teachers and her friends and even seems to enjoy the bus ride afterwards.

In other words, she is making excellent use of the wonderful gift her lifeguard Nancy gave her two and a half years ago, and as October is Liver Health Awareness month, we thought it would be fitting to give everyone an extended update on how she is doing. The old adage rings true: “no news is good news,” and it seems we have reached a place, thankfully, where we have plenty of that no news to share.