Can you believe it's April and that this school year is almost over? I can't. It seems like it was just a few weeks ago that we were beginning an adventure at a new school, and I wasn't happy about it. But I must say that it has been a good year for John. His new teacher is very supportive and does a great job communicating and taking care of John's needs so that I don't have to worry while he's there. The nurse and nurse assistant have both proven to be quite competent at replacing John's trach, since it has come out several times at school this year. He is learning and making progress towards his goals and most importantly, he loves going to school. I've gotten involved with the Special Buddies program, which in turn makes me more engaged and committed to John's whole school experience. While I still would have liked for him to have stayed with last year's teacher and to see him build on what he accomplished last year, I am very pleased with how this year has turned out.
But with the end of the school year comes summer. Summer can be tough, keeping up with John all day. I try to plan activities, but there is only so much you can do in Houston that is indoors so that we don't die in the heat. I began planning our summer and realized our calendar has gotten quite crowded. June has Vacation Bible School and August has Super Place Camp, both of which will be held at Tallowood. But the busiest month, and maybe the most exciting will be July when John and I will be spending 3 weeks in Austin while he goes through TheraSuit Therapy.
I told you all about TheraSuit last year when John was supposed to participate in it here in Houston. But the only clinic in Houston who did this therapy, closed the month before he was supposed to start. I was very disappointed at the time, but now realize it was probably for the best. John started horse therapy last summer so if he would have done both, he would have been exhausted and maybe not even able to participate fully. But this summer, we are not going to do horse therapy since we are doing it throughout the school year. So we will be able to concentrate all of his energy towards the TheraSuit. If you want to know more about TheraSuit therapy and what is involved in it and how it can help John click here. If you follow the link, be sure to look at the pictures.
I started thinking on our way to Kinder at Easter that it would be nice for John to be able to participate. Our Austin friends have done this therapy at a clinic in Austin and have been telling us we should come there to do it. But because John requires night time nursing, I never thought it would be possible to stay away from home for that many nights. But as I thought more about it, I thought that it may be possible. We could stay in a hotel in Austin during the week and then come home on the weekends where we have our regular nurses. I even decided that if I have to, I will take care of him at night as well as during the day if that is the only way we could do it. I knew I'd be able to get some sleep on the weekends so I figured I could tough it out. But then it dawned on me that our nursing agency has an office in Austin and maybe, just maybe they could provide night time nurses for the nights we are there. After talking with our nurse manager, she thinks it's a possibility since we have a lot of advanced notice to line someone up. So the next step was to contact the clinic and see if they had any openings.
I got through to one of the Therasuit coordinators and she told me that they had two available spots, both in the afternoon. One was July 1-19 and the second was July 29-August 9. She told me she would send me an application and I needed to fill it out and return it so they could go over it and decide whether or not he would be accepted. It was a lengthy application that required a lot of health history. It took a couple of days for me to go over and complete it as accurately as possible. Once I sent it in, I just had to wait. Meanwhile, I knew that even if he was accepted, there was still the cost to consider. It's not a cheap therapy and I knew we would need help from insurance in order for John to participate.I know a lot of insurance companies don't pay anything towards this therapy and some only pay a portion. I was just hoping that ours would cover enough. After a week of waiting, I finally got the email I had been waiting for. John was accepted. And the best part, our insurance is picking up the cost of the entire therapy, with the exception of the daily co-pay. I knew there was a $500 deposit required for holding his spot and the total of the daily co-pays came out to almost exactly that. So it turns out, we won't be paying any more out of pocket than we already expected to pay.
It just feels like this is the exact right time for John to participate. I knew there would be a few obstacles to clear in order to make that happen. But as I got further into the process, God just cleared every one of those obstacles out of the way. We still have a few more things to do before we start in July, but they shouldn't be a problem. I am so excited for John to be able to do this. He may not like it at times because it's going to be hard, and he may even cry or pitch a fit. But I know in the long run, this is really going to be best for him. It's going to really strengthen the muscles that need it most as well as help with balance and coordination. I'm so excited to see the difference this could make in his motor skills.
I have just a couple of prayer requests for you to consider. First, pray that the nursing agency is able to find a suitable night time nurse to take care of John the 4 nights a week we will be there. It would be exponentially better for both of us, if we can both get a good night's sleep each night. Second, pray for John as he goes through the therapy. I know he's going to be exhausted each and every day. I know it's going to be hard and maybe at times uncomfortable. Just pray that he is physically able to tolerate the tough days. Third, pray that this will help us to see major improvements in John's strength and overall motor skills.
We don't have a specific genetic diagnosis that explains all of John's special needs. One reason we would like one is to be sure we are doing everything we can to ensure that John will be able to meet his full potential. With the addition of this therapy this summer, it finally feels like we are doing everything we can. With that being said, pray for us as we await the results of some recent genetic testing. All three of us had to submit blood work to be analyzed in hopes of discovering a diagnosis for John. Having a diagnosis will not change the way we treat him or love him, but like I said before, it may affect the things we do for him to help him reach his potential. And it will be nice just to have a name. Maybe we can meet others with the same diagnosis that we can lean on for support and advice.
Once again, I thank you all for being so faithful with your support and prayers. Without them, we wouldn't be near as put together as we are.
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