This has be shortest time that it has taken for Karston's brace to brake. Yep, it happened again. This time it is not cracked or broken in a way that affected by how active he can be. This time it seems that the plastic has a huge dent in it right on the edge next to his ankle. There is a strap that comes across his foot at that same place and I am wondering if the pressure of the strap, the shoe and how active Karston can be might be the issue this time. This strap is a new feature that was added with this new brace. Well, this time I was able to get on in touch with the orthotist within a day of us noticing it. The problem is that the Orthotist has left the country and won't be back for a few weeks.
Karston can't wear the brace right now because the dent has cut into his foot. I just worry about how active he is without the brace. We must get this figured out!
Thursday, February 5, 2009
Friday, January 30, 2009
IEP?
We had a meeting at the school this week to determine whether or not an Individualized Education Program or I.E.P was needed for Karston and whether or not he may have a "learning disability."
As a side note... Heath and I are very much against labeling children and doing unnecessary programs for children that may not need it. We will never medicate Karston due to any learning disability and we did not pursue this lightly. We noticed that our son was having a hard time with a few of his subjects and mainly wanted to find out the best way to help him learn better.
During this meeting we discussed conversations that the school Psychologist, schools Social Worker, and the Physical and Occupational Therapist have had with him, his teacher, and with us his parents. We were all basically saying the same thing. He is a great kid that excels in reading, but struggles with Math. He has trouble focusing on task and is frustrated easily. Heath and I both felt that there were struggles that he was having that we ourselves could relate to. I just kept thinking, 'I am so glad that he is not here and that not every one's abilities and disabilities are scrutinized so closely.'
This post could very easily become to long to read in one sitting so, instead of telling you everything that was said in this meeting, I will tell you the result that we all came to and then in several other post I will tell of some of the details.
It was determined that Karston could benefit from an I.E.P., but that he is not going to be taken out of class for this. There is a resource teacher in the class room that helps to assist with the kids that are in need of a little extra help (Karston is not the only one.) She will now be helping Karston out a little more with staying on task and one on one help with Math. The Social Worker will also be coming into the classroom to help out and assist Karston in any way necessary. The Physical Therapist will be observing him in Gym class, and in the hallways. Karston will not notice much a difference in his routine at school, but will be getting enough help that he will hopefully notice a difference in his own performance. We are pleased that the school does not put labels such as Special Education on the children. They work with them within the classroom that these children are already a part of and do not disrupt their already learning process.
Lastly, they did have a solution for helping him to focus in class more. It was determined that he does not sit still very well and has a need for moving. They have now given him a "sit and wiggle." The sit and wiggle is seat, on top of his seat that allows him to wiggle around when needed. The only rule is to try and not disrupt the other children sitting nearby. The theory is that if he is allowed to wiggle in small intervals through out the day, then he will be able to focus on the work that is being presented during class time a bit better. He LOVES this new seat of his. I will try and have him tell you all about it soon.
Stay tuned for more details about how he is doing in school....
As a side note... Heath and I are very much against labeling children and doing unnecessary programs for children that may not need it. We will never medicate Karston due to any learning disability and we did not pursue this lightly. We noticed that our son was having a hard time with a few of his subjects and mainly wanted to find out the best way to help him learn better.
During this meeting we discussed conversations that the school Psychologist, schools Social Worker, and the Physical and Occupational Therapist have had with him, his teacher, and with us his parents. We were all basically saying the same thing. He is a great kid that excels in reading, but struggles with Math. He has trouble focusing on task and is frustrated easily. Heath and I both felt that there were struggles that he was having that we ourselves could relate to. I just kept thinking, 'I am so glad that he is not here and that not every one's abilities and disabilities are scrutinized so closely.'
This post could very easily become to long to read in one sitting so, instead of telling you everything that was said in this meeting, I will tell you the result that we all came to and then in several other post I will tell of some of the details.
It was determined that Karston could benefit from an I.E.P., but that he is not going to be taken out of class for this. There is a resource teacher in the class room that helps to assist with the kids that are in need of a little extra help (Karston is not the only one.) She will now be helping Karston out a little more with staying on task and one on one help with Math. The Social Worker will also be coming into the classroom to help out and assist Karston in any way necessary. The Physical Therapist will be observing him in Gym class, and in the hallways. Karston will not notice much a difference in his routine at school, but will be getting enough help that he will hopefully notice a difference in his own performance. We are pleased that the school does not put labels such as Special Education on the children. They work with them within the classroom that these children are already a part of and do not disrupt their already learning process.
Lastly, they did have a solution for helping him to focus in class more. It was determined that he does not sit still very well and has a need for moving. They have now given him a "sit and wiggle." The sit and wiggle is seat, on top of his seat that allows him to wiggle around when needed. The only rule is to try and not disrupt the other children sitting nearby. The theory is that if he is allowed to wiggle in small intervals through out the day, then he will be able to focus on the work that is being presented during class time a bit better. He LOVES this new seat of his. I will try and have him tell you all about it soon.
Stay tuned for more details about how he is doing in school....
Monday, January 26, 2009
Test Results
So our Test did not go so well.
He went to his friend's house and got so excited that he immediatley started playing and forgot all of his responsibility. He did come home wet, but had played outside most of the time so his snow pants covered any embarrasement that could have come.
We have all talked. He realizes the importance of taking the responsibility for himself and we understand that this is still a process and we are just getting started.
Thursday, January 22, 2009
Test... 1 2... Test
Today is a true chameleon Test.
When Karston's friend from school called the other day to ask if Karston could come to his house to play, I held my breath as I said yes. This is something that Heath and I have been concerned about for a while now. We have just gotten to the point with Karston that we all know the routine and help remind him of when he needs to cath. or take medicine. To send him straight from school to a friend's house for several hours is going to be a test for him to see if he can remember what to do when. My heart feels heavy just thinking about what might happen if he forgets.
I will be on pins and needles until he makes it home dry and happy. If all goes well, we may be able to trust him to do this more and then eventually have fun sleep overs. So with my fingers crossed, my heart in prayer and my mind full of worry, I have to wait
I will let you know when the test results come in...
When Karston's friend from school called the other day to ask if Karston could come to his house to play, I held my breath as I said yes. This is something that Heath and I have been concerned about for a while now. We have just gotten to the point with Karston that we all know the routine and help remind him of when he needs to cath. or take medicine. To send him straight from school to a friend's house for several hours is going to be a test for him to see if he can remember what to do when. My heart feels heavy just thinking about what might happen if he forgets.
I will be on pins and needles until he makes it home dry and happy. If all goes well, we may be able to trust him to do this more and then eventually have fun sleep overs. So with my fingers crossed, my heart in prayer and my mind full of worry, I have to wait
I will let you know when the test results come in...
Friday, January 16, 2009
"Brace" yourself...
Karston's appointment with the Orthotist went well, just like we knew it would. We discussed the possibility of making two braces so that the next time (and there will be a next time) we will have a second one for the in between stage.
The OT said that he is not sure that insurance will allow us to do two, but that he thinks it might be something worth looking into. We are set to pick up the new brace on the 29th of January so in the next two weeks we will need to continue being cautious.
He also wrapped his leg (where the frost bite burns were) with a Vaseline covered gauze and an ace bandage. There was three major spots of burn around his leg and only one is still open and oozing. We have reapplied ointment and re wrapped his leg. I will be keeping an eye on it, but it looks to be healing up. My biggest worry is whether or not he will have scars on his leg, although he is a boy so he probably thinks that would be Awesome.
The OT said that he is not sure that insurance will allow us to do two, but that he thinks it might be something worth looking into. We are set to pick up the new brace on the 29th of January so in the next two weeks we will need to continue being cautious.
He also wrapped his leg (where the frost bite burns were) with a Vaseline covered gauze and an ace bandage. There was three major spots of burn around his leg and only one is still open and oozing. We have reapplied ointment and re wrapped his leg. I will be keeping an eye on it, but it looks to be healing up. My biggest worry is whether or not he will have scars on his leg, although he is a boy so he probably thinks that would be Awesome.
Thursday, January 15, 2009
Frost bites...
I don't know if I have ever mentioned before that Karston has limited feeling in his right leg. One night Karston sat on the floor and played a game with his brother. After a while he thought his leg felt different and turned to look at it. That was when he notice a burn spot on his leg. He had been sitting with his leg up against the radiator and it had caused a small burn. Thank goodness he noticed it before it got any worse. We were able to treat it with a minor burn ointment and he was better within a day or two.
Yesterday Karston and his brother were out playing in the snow at a neighbor's house. When he came home (10 -15 min after his brother) he was crying because he had gotten snow down in his boot and his socks were wet. I told him to immediatley get his boots and socks off so that they could warm up. I had to help him with his right boot because his foot and ankle had swelled a bit in his boot. When I finally got the boot off (with much screaming from Karston) I noticed that his foot and ankle were bright red and I was worried. I gave him some warm socks and told him to stay off of his foot until it thawed out a bit.
When his dad got home we quickly did a swap (he got the kids, I got the car.) I totally forgot to mention Karston's leg, so there was not much more done for him. When I got home Karston was in bed and I had totally forgotten about the circumstances. Then today he went to school and when one of the teachers saw his leg they sent him to the nurse. When he got home he told me that the nurse told him that he had some frost bite on his leg. My immediate thought was that the nurse or Karston had over reacted and it wasn't that bad. I looked at his leg and saw what the nurse had seen earlier in the day. He had several places that looked like 1st or 2nd degree burns and they ooze coming out of them. His first layer of skin was peeling off and it did look bad. I immediatley found my ointment and put on the burns. Later in the evening he was showing his wounds to his grandparents and I got another look at them. They were no longer oozing, but still looked bad. We now have more ointment on them and his leg is wrapped in gauze.
Tomorrow, (well, technically later today) we go to the Spina Bifida clinic to get his leg measured for his brace. I will talk to them then about ways to prevent this from happening in the future. I will also try and post another blog tomorrow to let you know all about our visit with the Orthotist.
Yesterday Karston and his brother were out playing in the snow at a neighbor's house. When he came home (10 -15 min after his brother) he was crying because he had gotten snow down in his boot and his socks were wet. I told him to immediatley get his boots and socks off so that they could warm up. I had to help him with his right boot because his foot and ankle had swelled a bit in his boot. When I finally got the boot off (with much screaming from Karston) I noticed that his foot and ankle were bright red and I was worried. I gave him some warm socks and told him to stay off of his foot until it thawed out a bit.
When his dad got home we quickly did a swap (he got the kids, I got the car.) I totally forgot to mention Karston's leg, so there was not much more done for him. When I got home Karston was in bed and I had totally forgotten about the circumstances. Then today he went to school and when one of the teachers saw his leg they sent him to the nurse. When he got home he told me that the nurse told him that he had some frost bite on his leg. My immediate thought was that the nurse or Karston had over reacted and it wasn't that bad. I looked at his leg and saw what the nurse had seen earlier in the day. He had several places that looked like 1st or 2nd degree burns and they ooze coming out of them. His first layer of skin was peeling off and it did look bad. I immediatley found my ointment and put on the burns. Later in the evening he was showing his wounds to his grandparents and I got another look at them. They were no longer oozing, but still looked bad. We now have more ointment on them and his leg is wrapped in gauze.
Tomorrow, (well, technically later today) we go to the Spina Bifida clinic to get his leg measured for his brace. I will talk to them then about ways to prevent this from happening in the future. I will also try and post another blog tomorrow to let you know all about our visit with the Orthotist.
Thursday, January 8, 2009
a brace update
So I have talked to the orthotist at the place that makes Karston's brace. We are going in for an appointment on the 15th of January, that is next Thursday. This appointment is just for making a mold of his leg/foot and then we go back to pick up the brace a week or two later. When I spoke to them to make this appointment I suggested (per Heath's idea) that this time they make two braces so that when he does brake one it is not such an emergency to get back in to see them again. They seem to think that was a good idea, we just have to make sure that the doctor is ok with it and that insurance will cover two at the same time.
That is our biggest irritation with the Spina Bifida clinic, that nothing can actually be done until it goes through everyone first. Karston has three doctors, the brace people, physical therapist, and occasionally other specialist that we see when we go to the clinic. Thank goodness this trip will only be seeing the brace people and getting permissions from the Orthotics doctor. I will keep you all posted on how it goes.
When I told Karston that I made the appointment to get his brace, he was dissapointed. He told me that he liked not having to run in gym class, ha ha ha. That is so funny that he doesn't mind being different if it gets him out of what he doesn't want to do. That's a typical 9 year old for ya.
That is our biggest irritation with the Spina Bifida clinic, that nothing can actually be done until it goes through everyone first. Karston has three doctors, the brace people, physical therapist, and occasionally other specialist that we see when we go to the clinic. Thank goodness this trip will only be seeing the brace people and getting permissions from the Orthotics doctor. I will keep you all posted on how it goes.
When I told Karston that I made the appointment to get his brace, he was dissapointed. He told me that he liked not having to run in gym class, ha ha ha. That is so funny that he doesn't mind being different if it gets him out of what he doesn't want to do. That's a typical 9 year old for ya.
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