It's a good summer.
Having the trach tube removed has been the best thing...Harrison really feels like a regular kid, doing everything his friends are doing and feeling so proud.
It has been relaxing, with lots of car rides with mom and dad to run errands, go get ice cream, visit with friends, and just hanging out with us while all 3 of us do our ab workouts! And it has been busy, with summer school and our new favorite activity, horseback riding.
As always, Harry LOVES school. He is in a summer program on T-W-Th from 9-12 for 5 weeks. He has some different therapists who all bring new perspectives and approaches, and a teacher who successfully pesters him every morning to wake up from his post-breaksfast nap! If he does sleep through something, she makes sure he completes it later. Spending more time on the playground gives him many more opportunities to be stronger and interact with his friends. He comes home almost every day with a super piece of artwork, and I just wish he could tell me with words about how much he is participating in everything the class does (at least I can hear it from the teacher and nurses!) They all tell me how much stronger he is, how much better his eye contact is, and how much more a part of the group he is in general- it's a wonderful thing to hear!
A quick medical update: We have known that Harrison has a compromised immune system, which is why he was getting pneumonia so often. He has been much healthier since we started giving him a daily prophylactic dose of azithromycin (that miracle z-pac we all know and love!). As we expected, his health has improved even more since the trach tube was removed (yay!) His bloodwork, however, does not show as much improvement, so he has begun monthly IVIG infusions.
He had his first infusion in July and, as anticipated, he had a bit of a rough time over the few days following. He will get another infusion next week, and the good news is he can get it at home with a visiting nurse! If it is administered a little more slowly (the first one was over 2 hours) the side effects may be lessened somewhat...we'll see. He will get repeat bloodwork in the Fall to see if there has been any improvement.
