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...
Thursday, January 22, 2009
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.
Saturday, January 3, 2009
New Year, New Goals
Well, we have started a new year and there are a couple of goals we have for 2009...
1. Getting a brace that won't brake (might not be achievable)
2. Understanding the importance of doing the catheter on time and when told
3. Transitioning into not having to be told but knowing his own schedule and when it is time.
Maybe that is enough for now. He is only 9yrs old and we can't overwhelm him. I am looking into a few ways to help his constant Urinary Tract Infections and his extremely dry skin (eczema.)
1. This coming week starting back to school for the first time in 2009, he may have a bit of difficulty blending in as usual. His new brace (the one with Carbon fibers in it so that it doesn't break,) well umm... it broke. So now when he walks there is a definite difference in his gait. He doesn't have very good support in his ankle and that can mess up his knee, so when he puts his foot down his ankle turns which causes his knee to turn. I am calling the Brace Place on Monday and setting up an appointment, but it could be a few weeks before we get there and then another week or so before they have a new brace ready. UHG! FRUSTRATING! Maybe this time we can have them make two braces in case the first one brakes again.
2. As he matures, and we constantly repeat ourselves, I am hoping that this can be the year when Karston realizes how important it is do the catheter when he is supposed to. The threat of having more and more accidents might help with this. He told me recently that a friend of his has decided not to talk to him anymore and is telling all of her friends that he smells bad all the time. He has rediscovered his cologne and is using it frequently. I think that is because of this friend. We may have to tone down the amount he uses considering how much of enclosed space the bus will be.
3.Transitioning into him knowing when it is time to cath. will definitely come with maturity, but I think that we may be able to help a little too. We are looking into finding him a watch that will have an alarm on it set to go off every two hours for him. Not a loud alarm, just a beep. Then we can make it a game and see if he can cath. before anyone has to tell him. Maybe we can even set up some sort of reward system for this.
Overall, I think that 2009 will be a year of improvement for him and for all of us.
1. Getting a brace that won't brake (might not be achievable)
2. Understanding the importance of doing the catheter on time and when told
3. Transitioning into not having to be told but knowing his own schedule and when it is time.
Maybe that is enough for now. He is only 9yrs old and we can't overwhelm him. I am looking into a few ways to help his constant Urinary Tract Infections and his extremely dry skin (eczema.)
1. This coming week starting back to school for the first time in 2009, he may have a bit of difficulty blending in as usual. His new brace (the one with Carbon fibers in it so that it doesn't break,) well umm... it broke. So now when he walks there is a definite difference in his gait. He doesn't have very good support in his ankle and that can mess up his knee, so when he puts his foot down his ankle turns which causes his knee to turn. I am calling the Brace Place on Monday and setting up an appointment, but it could be a few weeks before we get there and then another week or so before they have a new brace ready. UHG! FRUSTRATING! Maybe this time we can have them make two braces in case the first one brakes again.
2. As he matures, and we constantly repeat ourselves, I am hoping that this can be the year when Karston realizes how important it is do the catheter when he is supposed to. The threat of having more and more accidents might help with this. He told me recently that a friend of his has decided not to talk to him anymore and is telling all of her friends that he smells bad all the time. He has rediscovered his cologne and is using it frequently. I think that is because of this friend. We may have to tone down the amount he uses considering how much of enclosed space the bus will be.
3.Transitioning into him knowing when it is time to cath. will definitely come with maturity, but I think that we may be able to help a little too. We are looking into finding him a watch that will have an alarm on it set to go off every two hours for him. Not a loud alarm, just a beep. Then we can make it a game and see if he can cath. before anyone has to tell him. Maybe we can even set up some sort of reward system for this.
Overall, I think that 2009 will be a year of improvement for him and for all of us.
Wednesday, December 10, 2008
Covering the flaws?
Karston recently discovered a "bump" under his bottom lip. He was worried that it might be a pimple. I don't know if nine year olds get pimples, but I guess it is possible. We tried to let him know that it is normal and hardly visible, but he was so distraught over it as he went to bed.
As I have mentioned before, there are so many things about Karston that should stand out to everyone he meets, but somehow he has this uncanny way of blending in. Yes he does have a brace on his leg, he has a scar on his back that could cause anyone to think that he wears low ride pants too low, one of his front top teeth is chipped rather severely, and not to mention that his walk has a bit of different stride. Not to mention, he is pulled out of class at school every two hours to take his "Medicine." All of these things make him different, but not any less loved.
As much as these things could cause any person to have low self esteem, Karston takes them all in stride. He really is a strong kid. Yet this one little, nearly invisible, "bump" on his chin has caused him such stress. As I said he went to bed fretting over this blemish, and when I woke him up the next morning his first conversation with me was about a bad dream he had that nigt. Yep, he dreamed that he went to school and all of the kids laughed at him because of his "Pimple."
I guess it is time that we figure out how to be a Chameleon when hormones and natural change, starts to set in. This is a new one for us and just the beginning of how to deal with this stage of life in a child, er, little man that is growing in all kinds of ways.
As I have mentioned before, there are so many things about Karston that should stand out to everyone he meets, but somehow he has this uncanny way of blending in. Yes he does have a brace on his leg, he has a scar on his back that could cause anyone to think that he wears low ride pants too low, one of his front top teeth is chipped rather severely, and not to mention that his walk has a bit of different stride. Not to mention, he is pulled out of class at school every two hours to take his "Medicine." All of these things make him different, but not any less loved.
As much as these things could cause any person to have low self esteem, Karston takes them all in stride. He really is a strong kid. Yet this one little, nearly invisible, "bump" on his chin has caused him such stress. As I said he went to bed fretting over this blemish, and when I woke him up the next morning his first conversation with me was about a bad dream he had that nigt. Yep, he dreamed that he went to school and all of the kids laughed at him because of his "Pimple."
I guess it is time that we figure out how to be a Chameleon when hormones and natural change, starts to set in. This is a new one for us and just the beginning of how to deal with this stage of life in a child, er, little man that is growing in all kinds of ways.
Wednesday, December 3, 2008
I give Thanks...
I give thanks for my chameleon. There is a history in this family of trouble and heartache with sickness, birth defects or death with all of the first born in this family.
We all know God has a special plan for each of these first borns, even the babies that passed away. We are reminded of when Mary was pregnant with Jesus and Pharaoh declared that all of the first borns should be killed. I am not equating my son to Jesus, but I do know that God has a special plan for him that Satan does not want to happen.
We have expressed to our son how special he is and how Satan wants to steal the plan that God has for his life. We remind him of this when times get tough and it is hard to blend in with everyone else. He knows that he was never meant to blend in, he was never meant to be just like everyone else. He has the hand of God on his life and a special purpose for all of the difficulties that he will go through. He is a chameleon to most people that he will meet, but to God he stands out as one of his greatest creations.
So I am thankful for my Chameleon with special needs and a special purpose. I am thankful that God entrusted me with such a precious gift. I am thankful for all of my children and I know that God's plan for each of them is grand and full of Grace.
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