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.
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