We went back to the DS Clinic today. It was a good visit. They were able to help us with some of the things with which we have been having problems. And they were very reassuring too. They were also impressed with his movement and communication. Of course, they see lots of people with DS so they have a huge base of comparison.
Physically, they of course want him to move more. They told us that we didn't need to use the shorts that keep his legs together. They said his legs don't splay too badly, and the shorts would be too binding. If we need them, maybe only at night. They weren't concerned about his toes spreading when he stands. As I suspected, he is doing it to grip and look for support. They said once he has better balance and stability he will do that less and less. We are supposed to work more on crawling, which he simply hates. He is not a fan of tummy time, except for sleeping, but they gave us some ideas to try different ways to make it seem less like work. There were even some swimming things that would help. One of the OTs used to do aquatic therapy, so she really had some useful ideas. The PT even suggested doing abdominal and lower back taping to give him support for crawling too. Of course, I really don't want to go overboard with taping. Given the small amount of skin surface area, I don't think we can cover 50% of it! Also, they attribute his lagging physical development because he is babbling and making progress with fine motor skills. And then when he does start crawling and moving, we can expect a drop in his language and verbal skills.
The Speech therapist was pleased with his babbling. She could pick out several consonants (of course, not "m"- why does that have to be so hard??) and she said he will start varying the vowels that accompany them as the next step. She also tried helped us with the drinking problem. (Hello, my name is Danielle, and my son has a drinking problem!) She suggested thickening the liquids, but the way she suggested it was new to us. She said to try thickening the drink with food. Like mix yogurt with milk, apple juice with apple sauce, etc. So logical, it escaped us! She said it is common for babies with DS to need help with drinking from a cup. Justin's mouth doesn't close enough to keep the liquid in, and it's easy to get too much, and then he doesn't know what to do with it. That makes sense, since I am the one pouring it in. The doctor did say that he looks very well hydrated, which was a huge relief for me. I have had visions for us having to take him to the hospital for IV fluids and being chastised for not giving him enough to drink. It is so hard and I get frustrated so easily. And you know what tipped them off to him having enough fluids? The raspberry-blowing! They said his mouth would be the first thing that would dry out and he wouldn't have saliva to spit. So nice to know that there is something good about that!
Both sets of therapists measured him to be at 9 months of ability, everything averaged. I felt that was probably right. All of the therapists gave us their e-mail addresses and want us to get back with them if things don't work, or if we need other ideas. That was very reassuring. We also have to get Justin's thyroid checked, and she ordered a CBC, to check for leukemia. Not that there are any indicators, but since they are drawing blood anyway, to be certain. It was a good visit, I felt more focused and like we are working together than I did after the last visit. We go back in six months for another evaluation. I am hoping he is crawling by then, and maybe standing! I have my goals and the tools to accomplish them!
No comments:
Post a Comment