I have been looking forward to our aqua therapy evaluation for a few weeks and it finally happened this morning. I dropped Zak off at daycare which did not go smoothly. He has not been there for a while because of the snow and he was not happy about me leaving him. I felt so bad, but I knew he would be fine once I was out of sight.
Ryder and I made the 20 minute drive to the aqua therapy location. It was very easy to find and pretty close to the house so it seemed perfect. Once again, I will say that I was just so excited about this appointment because it seems like the pediatrician and therapists all felt this would be great for him. Not a "fix" because there is nothing to fix, but a definite help in strengthening his core muscles in the hopes of helping him have less falls and eventually master the stairs. We went into the main therapy room with the head PT (and a college student who was shadowing her) for her to do the evaluation.
First, the PT laid Ryder down on a mat and felt his legs, range of motion and general muscle tone of the core muscles. They also measured his legs because they noticed 1 was longer than the other. The PT found that his left leg is longer than the right which we did know. She took off his shoes, socks, and pants then let him get down and play with the toys so she could just observe his skills and during this she also took his medical history from me. She immediately was shocked with his skill level, in a good way. She told me that after feeling his muscle tone she didn't expect him to be able to run, jump, or kill a ball. Ryder is able to do all of that, but is pretty clumsy with it a lot of the time. She then asked him to walk on a very low balance beam which he had trouble doing and then she pulled out 3 different steps of varying heights (more like wooden step stools). He was able to step up on his own at all three heights, but would jump off instead of step off. She finally convinced him to step down off the 3 heights as well. She looked at me, laughed, and said he was making a liar out of me because he was able to do steps! I then pointed out to her that he will only step up with the right foot and down with the left foot. So she worked with him for about 15 minutes until he finally stepped up with the left foot, but only if she would hold his right foot down and give him no option.
Once she was done with the evaluation she gave me her recommendations for Ryder. She said that right now he is not delayed for gross motor skills (which I knew) although he is clumsy and not always coordinated with his movements (which I knew). Then she said that she feels he would not benefit from aqua therapy and my heart sank. She explained that he does have low muscle tone, but that some other muscles have compensated which is giving him the ability to do all of the gross motor skills. His body has learned to function using muscles that are not normally utilized for walking, running, jumping, and kicking. She said the best thing for now is to just keep doing what we are doing and continue to keep his other muscles strong and functioning for him. That is good news because his body has learned its own way to move so that he can function. That is bad news because now he won't benefit from the therapy in which all of the other therapists and doctors felt would be a good thing for him! My heart sank because this therapy was pretty much the only option everyone has offered as something to help Ryder and now it is no longer a good option for him.
While taking Ryder's medical history she discovered that he has feeding issues (chewing, biting, etc) along with the language delays. She said that they have an excellent OT who specializes in feeding issues, but she was going on maternity leave in April. However, she is going to pass on Ryder's information to her and see if they can fit him in before the maternity leave. In the meantime, they also have a speech therapist that works on oral motor things (has a lot to do with the chewing aspect of feeding) who has openings on Wednesdays. So she is also going to give her Ryder's information and I should hopefully hear from them soon. So instead of finding aqua therapy to help with low muscle tone we walked out with a good possibility of starting private speech therapy to work on oral motor concerns....so that is great news!
The part of this evaluation that really upset me is when the PT said she thinks that Ryder's issues with going up and down the stairs is behavioral! She said since he is ABLE to go up and down stairs that he should have no reason to not do it all the time. This upset me because I am the one with him everyday watching him struggle and it is not that he is just choosing not to go down the stairs. Along with the fact that the OT who works with him also feels his low muscle tone is affecting his ability on the stairs along with eating and drinking. Yes, Ryder can go up 1 step (only with right foot) and down 1 step (only with left foot) on his own with his own. But he can't do multiple steps and in order to be successful in his daily living he needs to be able to do a full flight of stairs multiple times a day...that is just a fact of life when living in a 3 story townhouse!
Sorry for the long rant, but I am just not happy with the final outcome of the appointment. I am very happy the PT feels he does not need additional therapy! Also, I am happy that we might have found some additional feeding help. I am disappointed because I know he has issues with the stairs and all of the other therapists and doctors felt the aqua therapy was the answer...now we need to find another route.
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