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.
Showing posts with label therapy. Show all posts
Showing posts with label therapy. Show all posts
Monday, April 15, 2013
Thursday, February 7, 2013
I'm back...
...Well, maybe. I knew it had been a while since I last blogged but I had no idea it had been 3 months. I sort of felt like there really wasn't much to write about. We have been trudging along through everyday life. Nothing new or excited has really happened. But, if I take some of the smaller things and put them together, then maybe I would have at least one good post in me. So here is what's been going on.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
The holidays went by in a rather blur. Tommy and I hosted both Thanksgiving and Christmas at our house. While it's nice to not have to travel, there is a different difficulty in having everyone at your house. But we had a great time. Thanksgiving seemed to go by pretty easy. We had dinner instead of lunch and since we did a lot of preparations the night before, we didn't really spend our entire day cooking on Thanksgiving day. Christmas, however, was a different story. We had basically the same menu, with a few exceptions, but I spent the entire day in the kitchen, rushing to get it all together to eat at 5:00. I don't know what happened. And, if it wouldn't have been for our neighbors letting us use their oven and their refrigerator and a few of their dining room chairs, I don't know if we would have made it. It's great to have neighbors like that. Have I mentioned before how much we love them? I'm pretty sure I have. The best part of the holidays is we all managed to stay healthy. No illnesses through the whole month of December may be a record for us.
New Year's Eve was rather uneventful. We did get to spend some time with several of our good friends. Each year, one family hosts a New Year's Eve party at their house. Since it includes kids, we start at 5:00. We left around 8:00 to get home before John's nurse gets here and we were all in bed asleep well before midnight. We are some real party animals at our house.
Since the start of the year, John has had several doctors appointments. They normally are more spread out, but somehow we managed to schedule 3 appointments in January and he has already had one in February with another coming up.
The first appointment was with the ENT. I mentioned to her that he seems to have this constant nasal congestion and every now and then it flares up to an infection. She put him on Singulair allergy medicine every day, along with a nasal spray. We have been hoping this would keep the congestion under control and keep him from getting any kind of sinus infections. However, he spent two days home this week with congestion. He got an antibiotic from the doctor on Monday and was finally able to go back to school on Wednesday. Poor little guy was just wiped out from not feeling well and has slept so much since Sunday.
The next appointment was with Pulmonology and there was nothing new to add. We did schedule another sleep study for this summer. Then we saw our Neurologist/sleep doctor. She decided that since John's sleep seems to be under control, she doesn't need to see him any more, unless he starts having problems with either sleep or seizures. So we can now cross one specialist off of our list that we see regularly.
Yesterday was a rather exciting appointment, well maybe it depends on your definition of exciting. We saw our PM&R (Physical Medicine and Rehabilitation) doctor. She basically follows all of his development progress. She recommends therapies for John as well as writes prescriptions for any equipment he might need. She was very pleased with his progress. She thought that we should get a different kind of brace for his feet. Instead of the tall kind of brace that goes most of the way up his lower leg, she thinks that short braces that just go up to his ankle would be sufficient. We are hoping that this will make it easier for him to pick up his feet when he walks. The other braces are so heavy and bulky, that he seems to have a little more difficult time picking his feet up off the floor when he is wearing them. But the exciting part of this appointment was that she suggested we start trying to potty train John. This thought has crossed my mind, but I just never have been convinced that he could handle it. Her suggestion was that we take him to sit on the potty every two hours and that we should start changing his diaper only in the bathroom so he can correlate that is what he is supposed to do in that room.
**Warning** this next paragraph talks about using the potty so if you don't want to read about it, you can stop now.
When he came home from school yesterday, I decided to try putting him on the potty. Sitting him on the potty is not an easy thing to do. First of all, he thinks it's HILARIOUS. Once I get him on it, he starts trying to grab the shower curtain and anything else he can get his hands on. Then when he realizes that I'm not going to let him, he puts his hands on the side of the seat and pushes his bottom up off the seat. Then sometimes he leans his head over and lays it against me. But the whole time he is laughing. The funny thing is, the very first time I sat him on it, he actually went. It was just a little bit, but he did go. When he was finished, I put a diaper back on him and then he promptly wet it. Of course he is not going to make it easy. I tried one more time last night and again this morning, and he didn't go either time. But we'll keep at it. His teachers are also going to work on it at school. We've decided that it will be easier if he is wearing pull ups, so we are going to start using those during the day. Today I went to Target and bought him a smaller seat to put on the potty and a couple packs of pull ups. The problem with pull ups is that they aren't generally designed for kids John's size. So the regular ones are too small. But they have some called Good Nites that are designed for older kids who have trouble wetting the bed. So we will just have to use those. This is going to be an interesting adventure. I don't know if he'll ever learn to go to the bathroom when he needs to. It might just be that we train him to go at certain times of the day. But either way, I'll take it. I'm glad to have a friend that is going through the same thing, that I can talk to and get advice about it. It sure makes this journey easier when you have someone going through it along side of you that understands how difficult it can be and can speak the same language.
I'll end this post with a few pictures to show you what we've been up to lately.
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| Look how tall I've gotten |
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| My new trick |
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| Me and Ms. Caitlin |
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| Two peas in a pod |
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| Mommy's two handsome dinner dates |
Thursday, April 19, 2012
A Horse is a Horse of Course of Course
I just can't be around horses without singing the theme to Mr. Ed. Yesterday, John and I got to do something I have been wanting to do for so long. I finally took him for an evaluation for hippo therapy. I got a call on Monday that they wanted to see him for an evaluation and they had an opening for Wednesday. Can't you just feel God moving and making that happen for us? So I picked him up from school around 11:30 yesterday and we set out on an hour drive to Magnolia (northwest Houston).
I didn't think we would ever get there. That place is in the sticks. But I was very impressed with the facilities. The only unimpressive part was the parking lot. It was all gravel with dirt around the edges. Have you ever tried pushing a wheel chair across gravel? It's not easy. Going across the dirt was a little easier, but still not ideal.
We went in and met some of the staff. The physical therapist, Lee, met with us and after answering some questions for her, she wanted to see what John could do. So she spent a little time playing with him. She got a good feel for his balance and his abilities, as well as how much he seeks imput from outside sources. She then put him on this seat that moves and simulates a horse's movement. He did well on it, but in no time he was wanting more imput. Then she tried on a helmet to see which one would fit him and then we set off outside to the arena.
We rolled him up on the wheel chair ramp, and someone brought a horse over for him to get on. The horse's name is Dancer. She put the helmet back on his head and then he began to cry. He knew something was about to happen and he was not sure of it. So they got him up on the horse. One lady led the horse, and two people stood on either side of him to hold him up. Once they started to walk, he calmed down and then seemed to really enjoy himself. He looked so cute up on that horse, with the helmet on his head. They walked two laps around with him sitting up. Then they layed him on his stomach across the saddle and walked one lap. They tried to then let him lie on his back across the saddle, but he wanted to sit up. So they sat him up sideways on the horse and walked one final lap. He really did great.
He will begin therapy this summer, riding once a week for 7 weeks. It will depend if they have any spots open up whether he will be able to ride again in the fall. But I feel like that 7 weeks is better than nothing and he could really benefit from that time. The therapy sessions are 45 minutes long and about 35 of those minutes are actually spent on the horse. He will not only ride the horse, but they will also be doing therapy with him as he sits on the horse. I am so excited to watch him.
Of course I took some pictures and even a video. I am so excited about this. Thank you, Lord, for providing this opportunity for our son.
I didn't think we would ever get there. That place is in the sticks. But I was very impressed with the facilities. The only unimpressive part was the parking lot. It was all gravel with dirt around the edges. Have you ever tried pushing a wheel chair across gravel? It's not easy. Going across the dirt was a little easier, but still not ideal.
We went in and met some of the staff. The physical therapist, Lee, met with us and after answering some questions for her, she wanted to see what John could do. So she spent a little time playing with him. She got a good feel for his balance and his abilities, as well as how much he seeks imput from outside sources. She then put him on this seat that moves and simulates a horse's movement. He did well on it, but in no time he was wanting more imput. Then she tried on a helmet to see which one would fit him and then we set off outside to the arena.
We rolled him up on the wheel chair ramp, and someone brought a horse over for him to get on. The horse's name is Dancer. She put the helmet back on his head and then he began to cry. He knew something was about to happen and he was not sure of it. So they got him up on the horse. One lady led the horse, and two people stood on either side of him to hold him up. Once they started to walk, he calmed down and then seemed to really enjoy himself. He looked so cute up on that horse, with the helmet on his head. They walked two laps around with him sitting up. Then they layed him on his stomach across the saddle and walked one lap. They tried to then let him lie on his back across the saddle, but he wanted to sit up. So they sat him up sideways on the horse and walked one final lap. He really did great.
He will begin therapy this summer, riding once a week for 7 weeks. It will depend if they have any spots open up whether he will be able to ride again in the fall. But I feel like that 7 weeks is better than nothing and he could really benefit from that time. The therapy sessions are 45 minutes long and about 35 of those minutes are actually spent on the horse. He will not only ride the horse, but they will also be doing therapy with him as he sits on the horse. I am so excited to watch him.
Of course I took some pictures and even a video. I am so excited about this. Thank you, Lord, for providing this opportunity for our son.
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| Coming out of the shoot. |
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| Still not too sure about this. |
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| Getting the hang of it now. |
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| I'm riding. |
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| On his tummy. |
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| Side saddle. |
Ride em Cowboy
On his tummy
Monday, April 2, 2012
That was fun while it lasted
Today is Monday and that means another therapy day. Last week, neither therapy was very good. He wasn't much interested in the eating, and he was just not having any part of physical therapy. So today we set off once again to see how it would go. He did a little better with OT and eating, but still not as good as he has been doing. But the PT is where it all goes down hill.
Since I posted a few months ago about how well he did during a PT session, I was hoping to be able to build on that and have a lot more good things to tell you. But there hasn't been much. It seems that each session since has steadily declined and we are at the point now where he won't do anything that we want him to do. Today, I had enough of watching him. I know the things he is capable of and he is just not doing any of them in therapy. I can tell by the demeanor of his therapist the last few weeks that she no longer knows what to do with him either. She has continued to try, but nothing seems to work for him. I don't know if it's the therapist and he's just not relating to her, or if he is just really that stubborn and just doesn't find any of it interesting. So today I made the tough decision to discontinue his PT for the time being. This doesn't mean that we won't start back again in the future, but for now, it's not worth the time or effort being put into it, because he is taking nothing away from it. He does better on his own at home. Both his therapist and I agree that something needs to be done about his sensory problems in order to make progress in his gross motor skills. I would say that it was fun while it lasted, but it really wasn't.
Today I came home in search of a solution for this. My immediate thought is horse back riding, or hippotherapy. Since I struck out with the place closest to us last week, I decided to call the place that we tried 2 years ago and see if I can make any headway. I spoke to a lady at one of their locations and she informed me that they don't do hippotherapy because they do not have any licensed therapists on staff. They only do therapeutic riding, which is different. I'll explain in a few minutes what the difference is. But she told me she would contact the lady at the other location and we could have an evaluation and see if therapeutic riding would benefit John in any way. I asked the lady if she knew of any other places in the area that offers the hippotherapy and she gave me the name Joy Riding Program. This place is located in Magnolia, which is probably about an hour's drive from here. They have licensed Physical and Occupational Therapists on staff. So I called them for information.
I spoke with a very nice lady named Lee, who was extremely helpful. I felt like I was finally making progress. Lee went over what they do and it all sounds great. I was a little misinformed about what hippotherapy really is so it was nice to get a clarification on it. Of course they don't have any spots at the moment, but she felt confident that he could get in for their 7 week summer session and then it would be a possibility that something would open up for the fall so he could continue riding. So my next step is to fill out the registration packet and send it back so that they can set us up for an evaluation. After talking with Lee, I am much less discouraged than I was when I left TCH this morning. And I should add that on my way home from therapy, I prayed and asked God to help us figure out the right path for John and to provide him the opportunity. Of course, God being God, he seems to be answering that prayer right away. Although we aren't officially enrolled in the program, I know God is working and that big things are on the horizon for John. I'm learning more and more each day about just how mighty our God is!
I want to share with you a video that the Joy Riding Program has on their website. The video is about 12:30 long and it explains the difference between therapeutic riding and hippotherapy and it also explains all of the things that hippotherapy does. Talking with Lee did make me feel better, but watching this video made me hopeful of all of the things John could accomplish if we can just get him on a horse.
Please pray for us and for John as we continue to search for ways to help improve his gross motor skills. Pray that God will open the doors to the right program that is going to help John make bigger strides toward his potential. Also pray that we will continue to trust in God's perfect timing and to know he is leading the way. I read this morning about God leading the Isrealites out of Egypt and away from Pharoah and I was thinking I could really use a pillar of cloud to lead me in the direction he wants me to go. But I have faith that if I seek his guidance and listen, he will show me the way.
Since I posted a few months ago about how well he did during a PT session, I was hoping to be able to build on that and have a lot more good things to tell you. But there hasn't been much. It seems that each session since has steadily declined and we are at the point now where he won't do anything that we want him to do. Today, I had enough of watching him. I know the things he is capable of and he is just not doing any of them in therapy. I can tell by the demeanor of his therapist the last few weeks that she no longer knows what to do with him either. She has continued to try, but nothing seems to work for him. I don't know if it's the therapist and he's just not relating to her, or if he is just really that stubborn and just doesn't find any of it interesting. So today I made the tough decision to discontinue his PT for the time being. This doesn't mean that we won't start back again in the future, but for now, it's not worth the time or effort being put into it, because he is taking nothing away from it. He does better on his own at home. Both his therapist and I agree that something needs to be done about his sensory problems in order to make progress in his gross motor skills. I would say that it was fun while it lasted, but it really wasn't.
Today I came home in search of a solution for this. My immediate thought is horse back riding, or hippotherapy. Since I struck out with the place closest to us last week, I decided to call the place that we tried 2 years ago and see if I can make any headway. I spoke to a lady at one of their locations and she informed me that they don't do hippotherapy because they do not have any licensed therapists on staff. They only do therapeutic riding, which is different. I'll explain in a few minutes what the difference is. But she told me she would contact the lady at the other location and we could have an evaluation and see if therapeutic riding would benefit John in any way. I asked the lady if she knew of any other places in the area that offers the hippotherapy and she gave me the name Joy Riding Program. This place is located in Magnolia, which is probably about an hour's drive from here. They have licensed Physical and Occupational Therapists on staff. So I called them for information.
I spoke with a very nice lady named Lee, who was extremely helpful. I felt like I was finally making progress. Lee went over what they do and it all sounds great. I was a little misinformed about what hippotherapy really is so it was nice to get a clarification on it. Of course they don't have any spots at the moment, but she felt confident that he could get in for their 7 week summer session and then it would be a possibility that something would open up for the fall so he could continue riding. So my next step is to fill out the registration packet and send it back so that they can set us up for an evaluation. After talking with Lee, I am much less discouraged than I was when I left TCH this morning. And I should add that on my way home from therapy, I prayed and asked God to help us figure out the right path for John and to provide him the opportunity. Of course, God being God, he seems to be answering that prayer right away. Although we aren't officially enrolled in the program, I know God is working and that big things are on the horizon for John. I'm learning more and more each day about just how mighty our God is!
I want to share with you a video that the Joy Riding Program has on their website. The video is about 12:30 long and it explains the difference between therapeutic riding and hippotherapy and it also explains all of the things that hippotherapy does. Talking with Lee did make me feel better, but watching this video made me hopeful of all of the things John could accomplish if we can just get him on a horse.
Please pray for us and for John as we continue to search for ways to help improve his gross motor skills. Pray that God will open the doors to the right program that is going to help John make bigger strides toward his potential. Also pray that we will continue to trust in God's perfect timing and to know he is leading the way. I read this morning about God leading the Isrealites out of Egypt and away from Pharoah and I was thinking I could really use a pillar of cloud to lead me in the direction he wants me to go. But I have faith that if I seek his guidance and listen, he will show me the way.
Monday, March 26, 2012
City Life isn't Always a Good Thing
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.
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.
Monday, October 3, 2011
Catching Up
I have seriously been lagging behind in the blogging world. I just realized that it has been nearly 2 months since my last post. So I thought, as I sit here waiting on John at therapy, this would be a great time to do a little catching up. But honestly, there hasn't been that much going on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
This coming weekend, John and I are going to Kinder. My mom is going to Indiana to celebrate her brother's birthday, and my brother Jimmie and his family are coming to Kinder for Jimmie's 20th high school reunion. So I'm going to help my dad keep the kids while Jimmie and Chrystal attend the reunion festivities. I can't wait to see them and spend time with the kids. It should be a fun weekend.
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
In August, our summertime nanny, Caitlin, went back to school. We really liked her and John LOVED her. She was exactly what we were looking for and worked perfectly with John. You could see how much she genuinely cared for him and that it wasn't just a job to her. Caitlin was a life saver to me this summer, because I think I might have gone crazy without her. She came to work 5 days a week at 1pm and stayed until we got John in bed. That was perfect because it gave me and John the whole morning to be together. But in the middle of August, it was time for Caitlin to go back to school. We knew we were going to miss her greatly, and we didn't have anyone lined up to take her place. So on her last night with us, we took her out for a nice dinner as a show of our appreciation for helping us this summer. We were very sad to see her go, but hope she'll be able to work for us again during the holidays. Here is a picture she took with John her last night. Can you tell how much he loved her?
Just after Caitlin left, we had an interview with another potential nanny. Her name is Kirstin and she is a student at the University of Houston. We actually had two interviews set up and we weren't going to make a decision until we interviewed them both. But when Kirstin got here and we started talking to her, we quickly changed our minds and decided to hire her on the spot. So she has been working for us for about 1 1/2 months now. She comes every afternoon when John gets out of school and hangs out and takes care of him until bed time. She works an occasional weekend as well. John has gotten very comfortable with her and really enjoys spending time with her. She is a huge help to us also and we are very happy to have found her.
John has continued his Occupational therapy and is really making good progress. The therapist seems to be really impressed with how quickly he is progressing. He goes every Monday morning at 9:00 so he misses the first 2 hours of school. But he is beginning to make better attempts at chewing some of the food she puts in his mouth and he is using his tongue better to move the food to where it needs to go. If he keeps this up, maybe we'll be able to start introducing cheerios to him and continue to progress from there. It will make a huge difference to us if he is finally able to eat solid food without me having to puree it first. Oh I hope that day comes sooner rather than later. He has also been approved to start Physical Therapy again, so I'm waiting to hear back from the coordinator so we can get him on the schedule. She was holding the 10am spot on Mondays for me so he could do both therapies back to back, but I don't know if it's still open. I'm sure hoping it is.
This weekend, 3 of my best girl friends from college came to town. We used to make a point to get together at least once a year, but it had been 5 years since we were all together. So we had a lot of catching up to do. You know you have true friends when you can go that long without seeing each other and then pick up right where you left off. We had so much fun together and laughed so much. A weekend just felt like it wasn't long enough and it was hard to say goodbye to them. But we are already thinking of our next get together and we sure won't let it take 5 years. I have to say a great big thank you to my husband for taking care of John all weekend so that I could have the time with my friends. It was exactly what I needed.
School is going very well for John. I was a little nervous going in because I knew there were all new special education teachers. But everything seems to be working out great. First I found out just before school started that our school got a new nurse this year. She was the nurse at Holland Elementary when John was there for PPCD. She is fantastic and it was so comforting to have a nurse who was familiar with John and who is great at communicating. Then, just a few days before school started, I met at the school with the new nurse, her assistant, both special ed teachers and the two teacher's aides that work with John in order to go over how to take care of his trach. I showed them what the trach looks like and where I kept extra trachs in case his comes out. I showed them how to clean the area and how to suction. The teacher took detailed notes and the nurse wrote on some of the supplies so it would be clear how to use it. This is John's 4th year in school, and they have maybe had to suction him 5 times and have never had the trach come out at school. Well, after 4 years in school, it finally happened. The trach came out while he was standing in his stander. The best part about it is that the teacher noticed it immediately, which shows me she is paying attention, and the nurse came down right away and got a new one in for him with no problems. The nurse called me after the fact to let me know what happened and then after school was out, the teacher called me as well. So already the communication between me and the school is improved 100%. Anytime I have emailed the teacher with a question, she has either returned my email that day or called to talk about it. She is very involved and very invested in her students' education and that makes me feel 100% comfortable with John being there. Tomorrow is John's ARD (or IEP meeting for those in Louisiana). This is when we go over his current goals and either decide to keep them the same or change them to better meet his needs. His Special Ed Teacher will be there along with his 1st grade teacher, his PT and OT, his speech therapist, his Auditory Instructor, and the diagnostician and a principal. Because his teacher hasn't know him but for a couple of months, she asked me to come up this afternoon when school is out to meet with her before the ARD tomorrow. She just wants to make sure we are on the same page. I have to say that I feel very blessed to be in a school district who goes above and beyond to take care of our children and to make sure they are reaching their full potential. I can't wait to see what the future holds for John through his time at school.
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| Waking up the first day of 1st grade. |
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| Ready for school! |
I think that about catches you all up on what's been going on over the last two months. I started writing this while waiting on John at therapy, but concluded after I got home. I will try and do a better job of updating the blog from now on.
Monday, July 18, 2011
Good start
I had to write an update after talking to John's therapist this morning. The first thing she said was that he likes things with a strong taste. I already knew that because he likes eating things that are a little spicy. Last week when working on chewing, she used something called a nook brush. She would put food on it and then let him bite on the brush so he can get the sensation of chewing while also tasting food. When I tried this at home, he did more grinding of his teeth than chewing up and down. This time she used a slim jim with food on the end for the same reason. Apparently he likes slim jims because he actually chewed up and down on it. This is a good start for him. She also said he is moving his tongue towards the food better. This is something everyone needs to be able to do. We all do it when eating but we just don't realize it.
The second thing they worked on was drinking from a cup. In the past we have concentrated on him drinking through a straw. But today she used something called a nosey cup. This is simply a small plastic cup with a notch cut out of the top rim where the nose would go. Again using something with a strong taste, cranberry juice, she was able to get him to drink 3 ounces out of that cup in a time span of about 5 minutes. I have never been able to get him to drink that much that quickly from anything but a bottle. This is something else for us to continue to work on. I actually have several of those cups at home that I had bought a long time ago when trying different things. In fact, over the years I have bought just about every kind of cup I could find trying to find something that he could use.
So needless to say, I have put slim jims and cranberry juice on my shopping list so we can continue to work on these things at home. Already he is showing more interest and more progress than he showed in the few years of doing OT in the past. I am very encouraged and excited about the progress John is showing. I can't wait to see what he does next week.
The second thing they worked on was drinking from a cup. In the past we have concentrated on him drinking through a straw. But today she used something called a nosey cup. This is simply a small plastic cup with a notch cut out of the top rim where the nose would go. Again using something with a strong taste, cranberry juice, she was able to get him to drink 3 ounces out of that cup in a time span of about 5 minutes. I have never been able to get him to drink that much that quickly from anything but a bottle. This is something else for us to continue to work on. I actually have several of those cups at home that I had bought a long time ago when trying different things. In fact, over the years I have bought just about every kind of cup I could find trying to find something that he could use.
So needless to say, I have put slim jims and cranberry juice on my shopping list so we can continue to work on these things at home. Already he is showing more interest and more progress than he showed in the few years of doing OT in the past. I am very encouraged and excited about the progress John is showing. I can't wait to see what he does next week.
Getting started again
First of all, I am typing this on my iPad. It is very different. So if I have some spelling or punctuation mistakes, that is why. I will try not to type in my usual iPad/iPhone shorthand.
I am sitting in the waiting room at TCH west campus while John is at his occupational therapy appointment. We took a year off from all private therapies when he started kindergarten to let him adjust to the full day school schedule without wearing him out any more. I don't think I really intended to take the whole year off, but that's just the way that it worked out. Now that TCH has a hospital on our side of town, it is much easier to get to therapy. So I thought it was time to get him ba k into PT and OT during the summer so he'll be used to it again when school starts. Last week was our first OT session. Obviously I need to get back into the routine too because I completely forgot about it this morning and we were a little late getting here. Last week he had a good start so hopefully we can build on that and see some improvement with his eating. Some things we are working on is him recognizing that some foods have to be chewed before he can swallow it and drinking from a straw or cup. It's time to get rid of the bottle. We have to find a better way to get him drinking. And if I can stop Pureeing food, there would be a lot more options of food for him to eat. He would love trying new things and we could get him completely off of jarred food.
His PT evaluation isn't scheduled until August. We are still working on the walking and would like to get him a little more steady on his feet. Hopefully he hasn't lost too much since he stopped therapy last year and can pick up where he left off. I'll keep you updated on that progress when we start.
That's all for now. John should be about finished and will be coming out soon. Hoping his session was good today.
I am sitting in the waiting room at TCH west campus while John is at his occupational therapy appointment. We took a year off from all private therapies when he started kindergarten to let him adjust to the full day school schedule without wearing him out any more. I don't think I really intended to take the whole year off, but that's just the way that it worked out. Now that TCH has a hospital on our side of town, it is much easier to get to therapy. So I thought it was time to get him ba k into PT and OT during the summer so he'll be used to it again when school starts. Last week was our first OT session. Obviously I need to get back into the routine too because I completely forgot about it this morning and we were a little late getting here. Last week he had a good start so hopefully we can build on that and see some improvement with his eating. Some things we are working on is him recognizing that some foods have to be chewed before he can swallow it and drinking from a straw or cup. It's time to get rid of the bottle. We have to find a better way to get him drinking. And if I can stop Pureeing food, there would be a lot more options of food for him to eat. He would love trying new things and we could get him completely off of jarred food.
His PT evaluation isn't scheduled until August. We are still working on the walking and would like to get him a little more steady on his feet. Hopefully he hasn't lost too much since he stopped therapy last year and can pick up where he left off. I'll keep you updated on that progress when we start.
That's all for now. John should be about finished and will be coming out soon. Hoping his session was good today.
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