From Robbie's blog:
Today was a big day for Robbie.
He had a follow up appointment with his GI doctor today and it went quite well. She was happy with his weight (it was up, then down, now recovering after having been sick) which is at 21 lb 15oz. He's right at 25%tile on the adjusted growth chart and she'd like to see him stay there.
We discussed his eating, nutrition etc and she was pretty happy with the way things are going for now. They cooed over him as usual, which is always fun.
But the real fun came in the afternoon. Now, I can't even believe I'm typing those words because usually the meeting we had today was one I dread.
It was an IFSP meeting (individualized family services plan) for Robbie's state run therapy program. Basically we meet every 6 months to go over his progress and needs and set new goals. I usually dread these because honestly, having experts in to pick your child over just isn't fun. No one likes to see a list of what they CAN'T do. It's obviously important and done for good reason, so we suffer through, but I certainly don't enjoy the process.....usually.
For reference, Robbie's biggest area of weakness (both literally and figuratively) has been gross motor. When he started physical therapy 6 months ago, he was 39% delayed overall- as much as 70% in some areas.
Today at the meeting, all of his therapists had the chance to speak. They go over their new evaluations and their goals. Physical therapy started. She'd phoned in because she couldn't be present. She was exceedingly positive. She started talking about the new things she got to see when she evaluated him yesterday (pivoting while sitting, while on his tummy, she was even able to get him to stand unassisted for 1-2 seconds)and it was great to hear. Then she said that he was testing at 17% delayed. I was stunned. He's come so far!
By the time she finished and asked if I had any questions, I couldn't speak because I was fighting back tears. Our little fighter is catching up!
The rest of the meeting went pretty similarly. He also tested at 17% delayed in fine motor (and she attributed much of that to his eating issues and his small hands) and in adaptive skills (mostly related to lack of motion- he can't go get things he needs- like his mom and dad!)
His biggest delay was social/emotional. That was mainly because he doesn't mimic or play games yet. (No patty cake, for example.) That was at 29%. That's going to win him developmental therapy twice a month, but she wasn't even adamant that needs to happen. She feels like much of this comes down to his lack of communication (both receptive and expressive) and as that emerges, she believes he'll make progress. I am opting to go forward with it because I want to give him every advantage possible and frankly, he LOVES that therapist more than I've ever seen him love someone and I think the interaction would be good for him.
We all discussed his lack of eating a lot. That's not something the state evaluates for, so there's no real "score" to be had, but if it were, we all know it would be quite low. He is taking several bites of food pretty much every day these days. And we've had some stellar days here in there (stellar being about 2oz at one sitting) so we've seen some progress. There is still a long road ahead of us and we know that. Those goals were interspersed into his others as they related (social interactions, sensory and oral stimulation etc.) and we have a plan, at least.
Usually at the end of these meetings, I feel defeated and overwhelmed. Today, I felt uplifted and hopeful. Everyone agreed that he's incredibly good-natured, bright, charming and playful. Those are qualities that can't be taught or therapied. We're just incredibly blessed to have a son with such a great personality. We believe those qualities will take him far. The rest of it will come in time.