For the next couple of days, I'm going to give up my at-home juggling act and turn it over to my parents and Mark, while I will be in sunny San Diego, participating in a patient advisory panel for Seaside Therapeutics, the company that is working on several medications that will help Fragile x patients.
Then after the panel meetings, I get to visit with a cousin I haven't seen since she was pregnant with her daughter. Who is almost 10 now.
Aliza is beside herself with anxiety over my leaving. How do moms with attached children ever get away at all? She sobbed last night as if I were planning a six-month sabbatical. Instead of a quick 48 hour trip.
But, about the brushing - it's going really, really well. I tried it a few years ago and it didn't seem to make any difference, and I really got the feeling I was bugging him, so I quit. But now - now it rocks!
I've got to make sure my parents and Mark know to keep the brushing up with Zack, because he's loving it. I'm not sure whether it's calming for him - there's still a lot of screaming and pinching - but it's definitely making him happier. I finished brushing down his arms and legs this morning while getting him dressed, and he picked up the brush (carefully by the sides, so his fingers weren't touching the bristles) and handed it to me.
I asked him "Do you want me to brush you some more?" "Yeah," he said.
So, we'll do whatever makes him feel better.
AJ had his own little meltdown a couple of nights ago, I think resulting from the combination of not getting his anxiety meds anymore, and the emerging 6-year molars. I'm going to have my folks give him some Motrin. He gnaws on his fingers and/or a chewy all day long. With all that stuff in his mouth he can't talk clearly, and if he can't talk clearly he can't very well respond to speech therapy, so they were trying to get him to at least get his fingers out of his mouth, and he just couldn't take the pressure. He burst into crocodile tears.
Once he sat down with mom and watched his favorite Little Einsteins video he was giggly and fine.
AJ is my delicate little flower. They are going to have to be very gentle with him while I'm gone. And keep up the Motrin.
Planting 21/4/2018 #WotW #FragileX #Gardening
20 hours ago