Namine’s yearly appointment with her cranial-facial doctor was bittersweet; he’s retiring, so today we said goodbye.
This weekend we attended a new Children’s Hospital picnic for the first time!
With all the craziness lately, I never wrote about Namine’s most recent trip to the dentist last month. Some pretty important points were discussed.
Namine had an appointment in the dental clinic the other day. We have some hard decisions ahead of us.
Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.
On Thursday I took Namine to the speech pathologist at Children’s. He wanted to see and hear Namine speak with the prosthetic and without it. I had not put the prosthetic in because it makes Namine throw up. So we went without it, I still had it in my purse. Namine did her talking into the microphone and that went well. He and I talked and I told him that the Pat (that’s what I call the palatal prosthetic; it’s just easier to say) makes Namine throw up, and she couldn’t eat with it in, she was just having an all over hard time with it.
Thanks to the awesome folks over at Pierre Robin Sequence Foundation for including Namine in one of their promotional images.
I belong to a few support groups, one in particular being a Facebook group for Pierre Robin Sequence awareness. A question was posed today:
A question to parents with older PRS kids. what has having a child with PRS taught you, how has it changed you as a parent/person?
I don’t know if this really qualifies as a blog post, as it’s more of just rambling. But I’ve been reading up on Pierre Robin Sequence a bit more lately, in light of Namine’s prosthetic (with which she’s doing superbly well, by the way) as well as the search for comfortable glasses (on which I will write more later).
Contrary to how the saying goes, Namine has nothing close to contempt for her palatal prosthetic. Quite the opposite – she’s willing to put it in, and is doing quite well with the every-other-day plan prescribed by the speech pathologist.