We are away on our regular summer vacation!! Unlike the past where we would home swap, this summer we ended up having to secure a home through airbnb.com. We just couldn’t get anyone to want to trade homes during the dead heat of summer, surprise, surprise :). Sort of surprised we had luck for the past 2 summers. Like usual, the kiddos were great road trippers! We made our way north which took about a week with stopovers with various family members. All of our family visits were short but sweet. CB has always loved riding in his car seat, even as a baby. I think HB has simply followed suit as he has seen how his brother behaves on car rides.
We could not have planned a more jam-packed summer if we tried. I can’t say I would have given up any trip or experience, but I do wish there had a been a bit more relaxation time built into the schedule. I think some of CB’s behavior tidbits this summer were directly connected with our travels. Overall, the summer break has been good for him. He has more chunks of time set aside for play, mostly with HB, which I think is good for him. We have followed the new supplement schedule with just a few exceptions due to traveling and I think the supplements seem like a good fit. We are sticking to the GFCFSF diet. Thank goodness for all the modified diet options we have today. We attended a conference a couple of weeks ago where we connected with other families and learned more about CB’s genetic difference. I think the main things we learned is that an MRI could be helpful, an updated hearing test, signs to look out for for anxiety, an awareness that developing seizures later in life is possible (not sure though if it is really related to his gene or others on the long arm of Chromosome 18) and a few more things to investigate.
I am toying with the idea of piano lessons but then I also want to ensure that he has sufficient off-time/playtime. This is the second time he has said yes. We will see. I guess the next thing I need to figure out is his schedule and to ensure not to pack in too much into it. How do you do that with so many needed therapies? I guess that is the challenge we have as parents with children with special needs. I know that playtime is super important at his age, and his school gets that. I hope this year if things get to hectic, I will be aware enough to back off a bit and see if things balance back out. I also should see if there is an insurance-covered OATS-like test to test his levels to see if the supplements and anti-fungal cleanse helped.