John and I arrived yesterday afternoon. The place we rented is much smaller than I was anticipating. But for just the two of us, we are making due. Besides, we really don't intend to spend too much time here other than to sleep. But the best thing about this place is that it is less than 5 minutes from the clinic. If you have ever spent any significant time in Austin, you will know that traffic is not friendly. Of course it's not Houston traffic, but it is weird in the sense that there is traffic at all times of the day, not just during morning and evening rush hour. So being so close to the clinic, and not having to actually get on any highways to get there, is a pretty special thing.
One difference between this year and last is that his therapy this year is from 9am to 12. Last year, he was having therapy from 2-5 pm. I am kind of excited about the morning therapy slot. Yes, it means that we can't really sleep late in the morning, but John isn't really much of a late sleeper anyway. And generally, I don't like to get up and be in a hurry to get ready. The afternoon session allows us to take our time in the morning and kind of veg out instead of rushing to get ready. But being this close to the clinic, we really don't have to rush. Once we woke up this morning, we lazed around for about an hour before we started getting ready. We left the house at 8:40, ran through the drive thru at Starbucks, and still made it to therapy 5 minutes early.
I could tell pretty quickly once we got into therapy that mornings were going to work out well for John. Mornings are really his best time of day. He's well rested, he's happiest, and he's more focused. He was in such a good mood this morning, and he was excited to be there. He even giggled when we pulled into the parking lot, which is usually a sign that he recognizes where he is.
During the course of a week of therapy, John sees a physical therapist for 3 days and an occupational therapist 2 days. Today we started with the OT. We are very fortunate that we have had the same OT for each summer that we have come. Her name is Julie and she's fantastic. It's great to have someone who knows him. One reason is because she has an idea of what to expect from him and how to handle him. It saves a lot of time trying to figure out the best way he learns and she can jump right into work. Normally, a therapist will take a good 30 minutes or better of evaluation time, asking questions and watching what he can do before starting the actual therapy. So it saves significant time when she already knows him. The other good part of having the same therapist, is she can compare how far he's come and how much stronger he is since she last saw him. During the course of the year, it's sometimes hard for us to tell that he is making any significant progress. But when I bring him back here each year, I have things to compare him to and since she hasn't seen him in a year, she can tell the difference.
Therapy starts the same way each day. The therapist lays John down on a table in a open cage and uses pulley weights to work on strengthening his arms and legs. That takes 1 to 1 1/2 hours to finish. Then they put John in the suit. The suit is a compression suit that uses bungee cords. The bungees are used to help cue certain muscles, depending on which ones the therapist wants to use. So if they want a particular muscle to kick in, they can tighten the bungee associated with that muscle in order to cue it. Once in the suit, they do lots of different exercises with him.
The focus with John is the same this year as last year, to strengthen the muscles in his upper back and neck area in order to get him sitting up straight and to keep him from hunching over so much. His abdominal muscles are pretty strong already, and that is why he seems to sit hunched over. So most of the exercises they will be doing will be focused on that part of his body.
Today, after getting into the suit, John was put back in the cage in something they call the spider. The spider is a set of bungees that attach to the cage and then to a belt around his waste. They can use up to 8 bungees, hence the name spider. It is like giving him 8 extra legs. Last year, when John would get in the spider, she would try and get him to stand, but he wouldn't have it. All he could handle doing was kneeling, or his legs would be like Jell-O and he would just collapse to the ground. But today, he got in the spider and he stood right up and he looked great. He wasn't completely stable but he was able to stand there without the OT holding onto him, with only the support of the bungees. We hung something from the top of the cage for him to hold onto and keep him occupied. I was so impressed with how well he stood in there. And instead of using all 8 bungees, there were only 6. So he had less support than normal. He spent probably at least 30 minutes in the spider and didn't fade. She would make it move every now and then so he would have to try and correct himself and find the center again. He worked so hard and I was super impressed with him on the first day. It makes me really excited to see what else he will be able to do.
He was pretty tired when he was done, and even yawned a lot after, but I couldn't get him to nap today. I think after a few more days, he will likely come home and take a nap after lunch. But he went to sleep at 8:00 tonight.
He will only have 3 days of therapy this week. We will go home Wednesday after lunch. Tommy and I are leaving Thursday for a trip to Denver to see Zac Brown Band. We have really been looking forward to this trip. It was planned before he got into therapy, so we had to work around it. But John and I will be coming back here on Sunday evening, and he'll start back to therapy on Monday. Next Friday, we will go home after therapy and then return on Sunday for the last week.
I have to say what a difference it makes being here now that John doesn't have a trach. We didn't need to secure nursing for each night. That's great because I didn't have to worry what kind of nurse we would get. We carried way less baggage with us this trip. The car wasn't even fully loaded down this time. And going home on the weekend will be much easier because there will be less to pack up each time. We have the house rented over the weekends too, so there are some things we will be able to leave here. We won't have to completely pack everything each weekend.
Here are a couple of pictures I took of him in the spider today. And I also have included a video. Tommy posted a video to Facebook today, but this one is a little different. This was my favorite part of therapy today.
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| You can see she doesn't have any hands on him. |
