Yesterday we had an appointment with our favorite developmental specialist, Jan. We got an updated prescription for diapers (after age 4, the state pays for diapers -- it's called "incontinence". For about a second that depressed me, and then I thought, "hey, free diapers!"). I ran to Target this morning to get them. I'm getting the largest size diapers they carry -- size 6. We need to get these boys potty trained because I don't want to know where you have to go to get diapers bigger than the ones they carry in the baby section at Target. Don't want to know that at all. Either they get potty trained soon, or they must stop growing.
And we are changing Zack's zoloft prescription from a liquid to a pill. He can swallow pills great if they are relatively small and buried in a spoonful of applesauce. The liquid is pretty bitter even though the pharmacy adds a grape flavoring to it, and Zack fights taking it. I don't blame him. If a whiff of it hits my nose, my eyes water. It's heavy stuff.
I'm trying to talk Jan into coming to the National Fragile X Conference next July in Detroit. She is still considering it. She gave me her email though so when I get updates on the medications that are in clinical trials, I can email her the information, so I may have to send her some information about the conference as well. I'd love to see her there!
The boys did well, otherwise, at their appointment. They are around 43-45 pounds (a rough estimate since they won't stand still on the scale long enough for it to register a weight) and around 44 inches tall (yep, another rough estimate).
Zack showed Jan he knows different body parts, but AJ is not a performer. He was too shy to show her anything he's learned, but she knows that about him. Mostly they both do well when we are there, they love climbing up on the exam table, trying to poke around with Jan's computer, and shutting off the lights. They don't love the physical exam and all she does is listen to their chests and look in their ears and mouth.
People with Fragile X Syndrome can have a variety of other problems, one of which is mitral valve prolapse, a heart condition. The boys' hearts were tested at least a couple of years ago -- I think maybe when they were 2; by a pediatric cardiologist. I was wondering whether we need to have a test done again to check for that condition. From what I understand, it can develop at any time. Jan is going to check and see when the last heart test was done, and let us know if it's time to do it again.
Another fun problem FX kids can have is seizures. They can begin occurring anytime after at 4. So we are watching the boys for that as well.
Routines change, sometimes with a smile!
4 days ago