Most of you know that I grew up in a very small town in Louisiana. With the exception of the 4 years I went to college in just a slightly larger town, that is the only place I ever knew. Then I got married and moved to the 4th largest city in the country. It was a shock in the beginning, having to learn where the northwest freeway and the south loop and the west belt were. I still haven't figured all of those things out completely and I really don't know why we don't just call them by their actual names. But that is the way they do things here and if I want to know where accidents are when they talk about them on the radio, I better learn them. I soon learned that just because you are part of a large city, doesn't mean you have to actually go into the city. Every area of town is kind of like it's own small town. We live in Katy, which is the west side of Houston,and I rarely have to go into Houston city limits because most of what I need is in Katy. Now, Katy is quite larger than where I grew up, but it still has a small town feel and it helps to not feel so overwhelmed. I have really enjoyed living here. We also have one of the largest and best medical centers in the country and between myself and John, we are very fortunate to have that at our disposal.
But sometimes I wonder what the point of having all of this is if you can't actually have access to what you need. Specifically, I am having a hard time getting specific therapy services for John that our friends in Austin (by far a smaller city) has been getting for quite some time.
A few years ago, I heard about something called hippo therapy(it has nothing to do with hippopotamuses) from our Austin friends. I had never heard of it before. It is a type of therapy that uses horses. Study shows that the gait of a horse is most similar to the gait of humans, so kids who are immobile could benefit from riding horses and getting the feel of the movement when they walk. Other benefits are increased trunk control, a stronger core, and sensory integration. I found out about a company that does this and they have 3 locations in the Houston area. However the closest to us is in Missouri City and that can be close to an hour drive each way. So we thought this would be a great summer activity for John and we would be willing to drive that far once a week if it could in deed help him. So I took him out there for an evaluation and to tour the grounds. It's a great set up and a nice area. The lady who did the evaluation said she thought John could definitely benefit from this therapy. However, she thinks he needs to start with either a physical or occupational therapist and at the time they didnt have one on staff. But they were trying to hire one and when they did, they would give us a call. It's been two years and I still haven't heard from them.
So then I began to hear people talk about a different place in Houston that does the same therapy. This place would be a closer drive for us. I've called the place twice in the past and got no return call. This morning I finally got through to someone and the answer I got was that they currently have a long waiting list and couldn't tell me how long it might take for a spot to open up for him. But once again, they would give me a call when they had something. How much do you want to bet that I never hear from these people again. Why is it that my friend in Austin had no trouble getting in and has been doing this for a couple of years, but we can't even get a call back from anyone here?
The other therapy I want John to do is called therasuit therapy. This is very difficult to describe, so if you want to know more about it go to www.suittherapy.com. This is a very intense therapy. It lasts for 3 weeks and we would go five days a week for 2 hours each day. It is designed to help with balance, coordination, sensory, motor skills and strengthening the muscles. Again, I found out about this from our friend in Austin. A few summers ago, they came to Houston to this particular location and did the 3 week therapy. Now, there is a place they go in Austin and they are able to do it regularly there. However, this seems to be the only place in Houston who offers this type of therapy. Last summer we went for an evaluation and again they thought John was a good candidate for the therapy. However, they didn't have Any openings until October. Because of the location and the amount of time we would spend traveling to the place, it wasn't an option for us to do it during the school year. So we set up time for this summer to go back and get started. While that time is just a few months away, it frustrates me to think that we have wasted all of this time when he could have been doing it already. I am looking forward to him doing this, but the drive each day is going to be brutal. Just one more disadvantage of living in the city.
Here is a problem we are facing. John is in private physical therapy on a weekly basis. But the sensory issues that I talked about are beginning to get in the way of him making any real progress. The therapist and I both feel that if not for the sensory, he would be more than capable of walking and standing. Both of the therapies I've talked about can address the sensory so that he can start making progress, but we can't seem to get into those. So I feel like I'm beating my head against the wall each week when I bring him to PT. He is so big and strong enough to get out of any position the therapist puts him in. If he doesn't want to do something, you can't make him. And it quite often feels like he doesn't want to do the things we want him to do. So do we keep beating our heads against the wall and hope we will see a breakthrough, or do we keep waiting for a spot to open up elsewhere in this giant city?
On a different note, we are still making progress with sleep. It has been almost 2 months and still no ventilator and no oxygen. We have finally let ourselves talk about removing the trach. I even talked to his ENT (who would actually be the one to take it out) and she told me what the game plan would be. So if all continues to go well, and the sleep study in May is good, we could be trach free some time this summer. Now that is something to celebrate.
