Friday, January 28, 2011

21 months - 10 words, 25 signs

We count 10 words that Sweets can "say" now at 21 months:

Baby = "Bee Bee"
Bye Bye = "Ba Ba"
Cheese = "Gzzzh"
Dada = "DaDa"
Done = "Duh"
Hi = "Ha"
Mama = "MaMa"
Night Night = "Ni Ni"
Uh-Oh = "Oh Ah"
Up = "Buh"

She has 25 signs now that we count:


new coordinator

Today I met our new CDSA coordinator. Our old one moved to a different county. She seemed nice. I felt like she hadn't read Sweets' file though. I had to tell her our whole history. She didn't know that Sweets got other therapies, or that we needed a new developmental therapist. She asked if we thought we even needed to keep getting developmental therapy, and I said that we wanted to keep it, and at least it can't hurt. So now she's on top of getting us a new therapist and I should hear from her Monday about that. She said she wanted to have Sweets re-evaluated though to see if she still needed it. She offered that they could do the eval after her 2nd birthday, because the expectations go up at that point, making it more likely that she would test as delayed. I think that she would test as delayed anyway, but I guess that's a good idea.

I also asked about moving speech therapy to once a week for 45 minutes, instead of twice a week for 30 minues. We have to pay copays each time, and we only get 75 therapies per year on our insurance, so we don't want to use them all up now. But the therapist said that she thinks we should stick to 2x30 minutes because she thinks Sweets needs the full 60 minutes. So, we'll do that. I don't want to be cheap about it, if that's what she needs.

Wednesday, January 26, 2011

New therapist... again

I was happy that we were getting a new developmental therapist because I wasn't crazy about the old one. We saw the new therapist last week for the first time and I liked her. We had the session at our house because it was MLK day and we were off work, and I think it worked nicely to have it at home. So, now I just got an email from the new therapist that she found another job with another agency. So now we have to find *another* new therapist. And meanwhile, with all the confusion, Sweets has only had developmental therapy twice in the past two months. :(

Friday, January 14, 2011

No diagnosis

My Sweets has global delays in motor, speech, and maybe cognitive. It's a little hard to measure cognitive without speech. The doc said that if she was just delayed in one thing, they wouldn't worry about it because kids tend to learn one thing at a time. But since she has global delays, that is more concerning. She had her first steps and first words both around 18 months though, and has been really doing a lot of new things since then, so we are seeing a lot of progress now. The big question then, is whether there is something medical going on, or whether she is "just a late bloomer" as so many people like to tell me.

We've had a bunch of tests, including a karyotype (test for things like Down Syndrome), blood tests for muscular dystrophy and thyroid problems, evals for autism and neurology, and everything has tested okay so far. The most recent test was a DNA microarray which tests for small scale DNA copy number variances, and that just came back normal as well. So, we have no answers, but since everything is testing negative, and she is starting to do a lot of new things, we are now on a watchful waiting program and not testing anymore for now. The docs say that even if she were diagnosed with something, we are already plugged in to the early intervention therapies that we would need to get anyway, so the diagnosis isn't as important for now. But a diagnosis could be important later, in order for her to keep getting services once she ages out of early intervention. Or, she could be just a late bloomer and she will catch up by then anyway.

new developmental therapist

We are getting a new developmental therapist next week. We talked to the agency, and the boss said that she had received several similar complaints about this therapist and that she was actually going to reassign all of her clients to other therapists and let her go. So I guess I wasn't the only one who felt that way. The boss said that she didn't want us to feel just okay about our therapist, she wanted us to really love our therapists and think they are great. And I do think our other two therapists are really good, it was just this one that I didn't feel super warm about. So, we get a new one next week!

In other news, the speech therapy is going really well! I'm very happy with the therapist now. We are seeing a lot of new signs and sounds since we started. The physical therapist sees a lot of progress and says she thinks Sweets will graduate from PT some time this spring or at least before her yearly eval in June.