Infusion #4 done!
This one didn’t go quite as smoothly ☹️, a combination of Claire moving, and the needle not being inserted all the way caused it to come out. We had to unwrap the gauze, take all the tape out of her hair, reapply the numbing cream, wait for that to kick in and finally access again. Made for an extremely long day, but our little trooper just rolled with it.
It’s too soon to tell but we think the seizure meds are starting to help reduce the severity of her drop and myoclonic jerks. We are trying to be hopeful we finally have the right combination.
Josef has his first treatment Thursday and we will be staying the night to make sure everything goes smoothly.
We are looking forward to getting out of the house this long weekend and seeing friends and family for BBQs and pool parties!
