35 minutes ago
Monday, June 1, 2015
On having a kid with special needs and having a life
Sunday, Max and Dave roamed around New York City, once again. If you're there and happen to see a big, cuddly guy and a kid in a red Fire Chief hat wandering the streets, please point them to the nearest fire station and/or good sushi restaurant.
Their joy trip is the reason we haven't yet fully bumped up Max's anti-seizure meds. When I was talking with his neurologist last week, and I told him just how sleepy Max had gotten after the first round of an increased dosage, he realized we needed to space things out. So we've only been giving him more Trileptal in the evening, at bedtime, and not yet for his morning dose.
"You could try this weekend, depending on his activities," the doctor said. I explained that Max had a bowling birthday party he was looking forward to on Saturday morning, and Sunday was an outing with Dave but that we could cancel Sunday if we had to.
"No, that's OK!" the doc said. "He needs to live his life."
So we'll finish raising his dosage try next weekend. The doctor said he felt confident that now that Max has more mediation in his system, he'll be OK without us completely getting it to the ultimate amount he'll be on.
That whole living-life thing has been on my mind this last week. The main cause of his seizure is that his medication needed to be upped, although he is more at risk for them when is is tired. Max had been up late several nights in a row, having fun. Dave and I are both aware that fatigue can make him more likely to have seizures, even though it's been seven years since he last had one and this boy has had his share of late nights. The night the seizure happened, we had been bowling and then we went out for ice-cream.
We do our best to be responsible parents, staying on top of Max's doctor appointments, therapy needs and, well, all of his needs. But sometimes, we are like any other family, enjoying ourselves and living in the moment. I just can't beat myself up over that, as much as twinges of guilt still seep in. Especially when there is this:
Posted by Ellen Seidman at 6:35 AM