Wednesday, December 30, 2009

Speech Evalution, PT, and Feeding

Warning: This is going to be a long post.

Speech Evaluation: Randy finally received the speech evaluation that was ordered by his pediatrician in October. I think that initially the scheduler forgot, then he was out for surgery. This is the second evaluation he has received. The first on was in late March. The ST suggested that we wait for speech and concentrate his therapy time on PT and OT and feeding (he does feeding with his OT). Well I am anxious to get his speech started because his OT is pregnant with twins and is high risk. She has already sent Randy to someone else for his developmental therapy due to lifting restrictions, so I wanted his speech therapist to be able to step in with his feeding if she was suddenly put on bed rest (I know that can happen in the blink of an eye).
Although Randy does not have a lot of words, I realize that he communicates with us pretty well. If he wants to play, he grabs your hands and starts to clap. If he is hungry, he has this shrill kind of whiny cry that is very distinctive. He can ask you to pick him up. And he certainly has the words "all done" and "bye-bye" perfected. He speaks this gibberish, but I know in his mind he is truly trying to communicate. He uses inflection and different tones of voice depending on what he is trying to say. I think he just truly cannot make certain sounds.

He certainly understands most of what you tell him. Amy, the ST, asked me if he would retrieve items upon request. I told her know. Well, later that week, I thought about I would see if he would retrieve something. I was sorting clothes in the hallway and asked him to go get me a toy. He quickly crawled away and came back with this:

I was so impressed with my baby. I think he does not retrieve items because we do not ask him to. It is amazing the things we naturally don't do with children if they have a motor delay. I'm sure I would have asked him to give me something a million times if he were walking.

The report states that average ability scores fall within a range 90-110. Randy's scores were:

Receptive Language 87/19 (ability score/percentile rank)
Expressive Language 97/42 (ability score/percentile rank)

She is recommending therapy once per week.

Physical therapy: Randy gets all his therapies while he is at daycare. That is actually the main reason he started daycare this year. The upside is that they can adjust his schedule if the therapist will be off on his regular day or any other conflict. The down side is that I do not attend therapy with him. So when I am off work, I try to attend. They changed his regular Friday session to Monday due to the holiday.

Randy is officially crawling on all fours, and almost never belly crawls anymore. Bobbie, his PT, is working on him pulling to stand, cruising, and bearing weight for longer periods of time. Well while she is working with him, he is being the little stinker that he can be at times. He is rolling around when she wants him to stand or buckling his legs. She then starts to tell me how he has been very uncooperative since he returned from surgery and that his lack of cooperation is going to impede his progress. She says that the classroom teachers are having problems with his behavior and that he is biting other children. I am pissed!!!! I'm not mad because she is telling me these things, but I am mad that she is saying something instead of the classroom teachers. I am mad because I have emailed her on several occasions telling her how I want and need feedback from his sessions. And then she hits me with this!! Like she's at the end of her rope! Like this is some huge problem that needs to be addressed ASAP! Why didn't she email or call me when it was a small problem??

So I tell her that I had no idea that things were this bad and that I have been voicing my concerns with feeling disconnected from his therapy since he started daycare. I ask her what can I do to help improve this problem. She says that we need to all be consistent in what we do when he misbehaves or resists. Then the light bulb goes off.... She thinks that we spoil him at home and at the sitters. All the while she keeps giving me this look like "see what I mean" every time he resists or whines or has a meltdown. I tell her we will work on it. She tells me she will ask the coordinator to look at her schedule and try to schedule him late afternoon on one of the days he attends daycare so that I can attend a little more regularly.

Somewhere in the midst of the therapy and drama, I ask her about Randy's future mobility. Age 2 is about the time that mobility and being upright with your peer group becomes more important. The PT feels very confident that Randy can/will walk. She says she is not eager to jump into a lot of assistive equipment the moment he turns two. She is eager to see what the orthopedist recommends in January when he goes to the CP clinic. She says that she will start to put him in a Kaye walker to help him practice the movement of walking. The thought of a chair is not in her mind and I am OK with that.

Kaye Walker

Feeding: Again, because I am off for two weeks I wanted to attend feeding therapy. I planned to attend twice, but had to cancel because Randy was really sick last Tuesday. I have written several times about Randy's difficulty with eating. He really has only a couple of table foods and yogurt and purees. He is growing on his current diet.

I think the PT and the feeding OT have been talking to one another. She said that Randy does not like to be challenged. She said that a lot of that was due to his age. We talked about how much progress he'd made this summer and attributed a lot of this to the fact that I was basically the only one feeding him. We talked about his schedule at school and the adaptations he has to make between the days he's in daycare and the days he is at the sitter and the weekends. She says that consistency is going to be key to his progress. That's when the second light bulb went off.

While we were talking, she fed him some beans. He gave her resistance, but did not cry like he does with me. His feeding therapist has been able to get him to eat things I never could. But, I was surprised to see the small amounts they were considering eating. These definitely do not constitute a meal. I learned how to stretch his cheeks in addition to using the NUK brush. She also suggested buying an electric toothbrush.

So, I have a lot to process about the therapies and what I am going to need to put in place for Randy's continued progress and how I am going to need others to support these goals.


  1. Hi. I am from Preemie Blog Moms. My baby Elijah is a former 24 weeker who has also recently been diagnosed with CP.

  2. Hi Denise. Thanks for stopping by. I've stopped by your blog before.

  3. I look forward to following along with how Randy is doing as all the therapist work with him. He is like 10 days older than my Jeremiah waiting for me in Taiwan :) Future buddies I think! :) Thanks for sharing :)