Not The Only Chameleon in the neighborhood...

A week and a half ago we had a neighborhood party and got the chance to meet many neighbors we had just never met before, while at the same time enjoyed seeing our neighbors that we see everyday. We have a really friendly neighborhood that is full of great people.

One couple that we know has a little girl that they just adopted from China in the last year. She was born with a birth defect in her foot and has spent her first two years in a leg brace much like the one that my son wears. A few months ago she had surgery to amputate her leg and foot and now has a prosthetic. I watched this little 3yr. old girl as she played with my daughter and her sister and many of the other kids. She ran, she jumped in the bouncy house, she rode her bike, she had just as much fun as the other little girls. She was a true chameleon.

We also got to meet a family that my boys have known, but I had never had the opportunity to meet. This family has 4 children, two boys and twin girls. Their second son was born with a spinal condition (similar to my son's) that caused atrophy in all of his muscles. He is in a wheelchair and probably will never know what it is like to walk. Now how could a child in a wheelchair blend in with his surroundings? Well, while I stood in the park talking with his mom, she looked around with curiosity. Then she asked the question that all mom's ask from time to time... "where is my child?" I looked with her, scanning the crowd, looking everywhere for that very recognizable chair on wheels. He had done it. He had blended in with his surroundings. We found him right in the middle of a group of adults sitting in lawn chairs and talking. Later I looked over and saw all the kids racing on foot, on scooters, on bikes and then the one boy was racing his wheelchair. I noticed that this young boy often came in last while racing and I wondered how that made him feel. The next time that I looked he was way ahead of the other kids and about to cross the finish line. His dad had gotten behind him and was pushing him while running as fast as he could. He was once again blending in with the other kids.

The next time you notice a child with a disability, look for ways that this child may be blending in and enjoying life as they know it.

No longer blending in at the hospital!

My dad went for a check up with the specialist the other day and came home with some wonderful news! NO Cancer is detected in the Liver or Bladder. YAY! There is still some rements in the scar tissue near the appendix. Possibly one more treatment and he could be cancer free. He also tells me that he is daily gaining his strength back. I look foward to seeing him in a few months and spending some quality (not sick in the hospital) time with him.

Blending into 4th grade...

Today was the first day of 4th grade and the first time that we got the chance to meet Karston's teacher. This is Karston's last year at Elementary school and considering he has been at the same school since 1st grade, I really don't think that there will be much of an adjustment period. Most of the kids in his class have been in his class at one time or another and know how well he Blends in. The teacher is the only New Element to the New year.

When we met Mrs. Lett, she told us of how she had already spoken with his 3rd grade teachers about how his schedule had worked last year. She also informed us of how she had already looked at the schedule and found the perfect times for Karston to leave class for his needs. It was all worked out and the timings were perfect.

I think that she really set us at ease most when she admitted that she had never had a child in her class with Spina Bifida and then asked if she could call us anytime she has questions. I was amazed. No teacher had ever been so honest with us. Usually it seems that the teachers are scarred or intimidated by his "disabilities," which means that Heath and I have to initiate any conversations about his "Needs." We always forget to tell them something, which causes a problem at some point during the year. It is so nice to know that this teacher is interested and Wants to be involved in helping my son be the Chameleon that knows how to be.

And the Doctor Says....

This just in from my dad via F.B.: "After I was re-tested, I was told that I have made great improvement. The cancer has actually receded and many other things that tested negative last time, tested positive this time. I questioned why the C.E.A. levels were higher when they tested me at the hospital and she postulated that the breakup of the cancer cells could be causing the higher levels. My treatment formulas have changed now because while there has been much healing, there is still much to accomplish. Overall it is a good report. "

Thank you to everyone for your prayers and support. Please continue to pray for more improvements towards healing and for the family's hearts and souls to be filled with Peace and comfort. God is Good.

Not Giving Up...

Well it was a short stay. Dad went home from the hospital tonight, but not without getting some news from the Oncologist about his blood work. It is not the news we have all been hoping for or even praying for. The news is that the Cancer seems to have doubled in size.
Dad is still determined to fight and is not giving up. He is going to B'ham next week to follow up with the kinesiologist (herbalist.)

This has been very hard for all of our family. Please continue to pray for him and for all of us as we continue to fight with him and for him. I was reminded tonight that God can still work a miracle here. So while you continue to pray that God would extend his healing power into my father's body, don't forget to also pray that his Mercy and Compassion would reach to each of our hearts and souls and keep our faith charged so that we can KEEP UP THE FIGHT!

Exodus 14:14
Deuteronomy 3:22 and 20:4

Grump Chameleon

Dad was admitted to the hospital after he passed out at devotions this morning --Ambulance to Gulf Breeze Baptist hosp. --found blood clot in right leg. The doctors will be putting in a filter to keep the blood clots from hitting the heart or the brain.

My Aunt tells me that he is in good spirits today and that she told the doctors that he is unable to stay long at the hospital becuase it just make him more sick. Dad is eating organic foods and taking meds from the kinesiologist (herbalist) since he can't eat the hospital food. Should be a very short stay this time.

An example to follow...

If you read my other blog than you know that my dad has recently been diagnosed with Colon Cancer has been in and out of the hospital several times. He was given a colostomy bag in the hospital and told that it would be a permanent situation. Upon coming home and trying to live life normally we discovered that the colostomy bag was too small and he needed to be fit for one that would fit him. Because it was too small there were many challenges that came along with it. It was very frustrating for my dad to have to deal with this learning curve.

Now I know you are saying I thought this blog is about your son, why are you using this forum to tell us about your dad? Here is why...

My family has always been so supportive when my Chameleon has had challenges that we have had to overcome. They understand that it has not been an easy road for us and try to be there for us in any way that they can, even if all that they can do is give us words of encouragement. My family is great at supporting and encouraging each other in a crisis or emergency situation. My Aunt Beanie has been one of those family members that has a big heart for my son and what we go through. She often sends me messages to let me know that the family is supporting us with prayer.

Several weeks ago we were in Florida (where the family lives) trying to help out where and when we could. My Aunt explained to me that my dad was having a rough day with the colostomy bag and was getting very discouraged. She told me that she explained to my dad that if his grandson could do it so could he. She told him that he should look to my son as his role model during this situation. It is very sweet to think that my son's way of life could be an encouragement, especially at a very difficult time in his grandfather's life.

I told my son that my Aunt had told his "Grump" to look to him as a role model. His 9 year old response was this... "Um... I don't think that is such a good idea mom. He really shouldn't be running and climbing trees and stuff right now." I love it! It is the Chameleon part of him that made him think only of his "normal" abilities rather than the differences that he and "Grump" now share with each other and no one else.

Watchin' the clock

A couple of weeks ago I bought Karston a watch. The reason is that we wanted to be able to set the alarm so that he can better know how to keep to his own schedule.

It has worked nicely. Everytime it goes off he knows to go to the bathroom and I set it again for the next time. As long as I am around to set the watch he does very well. Our next step is to teach him how to set the watch and then go on his own. He is growing up fast and taking so much more responsibility for himself. I am so proud of him. It is so nice to finally be able to see that one day he will be able to completely care for himself and not have to rely only on mom and dad. We now set his watch for his cath. every two hours and also for his "potty meds" that he does for 30 min. daily. This couldn't have come at a better time, since I am now in Florida trying to help out with my dad (has been in hospital with kidney problems and Cancer of the colon.) I am not always the adult athority with him and the watchis helping other family memebers to be able to also care for him.

The watch has helped in other ways too. When he first got the watch he was still in school. I got a note home from his teacher saying that she was really pleased with how well his watch has helped him to stay on task with his classroom assignments. When I asked Karston about this he told me that he timed himself to see how long it would take him to do the work. His watch also has a stop watch on it and he is loving that feature of it.

His younger brother also got a similar watch, and is loving that he not only has what his brother has but that he is also able to check the time. He constantly wants to know what time we will be leaving here, or what time will be going there, or what time will be doing this or what time will we be... etc. I am proud of both of my little buddies for growing up but now that we are timing the whole growing up process I hope that it slows down and they are not teenagers before I am ready!

Growing Pains bring Mature fruit...

The other day I sat down and cried...

I got a call at 10:00am. The school secretary told me that I needed to bring Karston a change of clothes because he had an accident. I told her that I don't have a car at home, but would try to figure something out. I was expecting one of my friends to bring her 2yr old to my house within the hour so that I could babysit. Frantically, I called my friend and asked her to come a little early so that she could run me up to the school to take care of Karston. She agreed and told me that she would stay at my house with the girls and let me take her car. What a great friend.

I got another call from the school... She said that they found some shorts for Karston to put on, but he told them that he needs a shower and he won't come out of the bathroom. I told her I would be there shortly...

I got to the school and stepped into the bathroom to find Karston covered in fecal matter, from his ribs down to his toes. The floor was covered and his clothes were piled up in a brown mess on the floor. I was near tears but knew that I couldn't cry in front of him and the school staff. I had him put his snow pants on and gathered up his clothes into a bag. The staff said they would clean the bathroom and I brought him home right away. He showered off and got clean clothes on and stayed home the rest of the day.

I haven't seen a mess like that since before Karston started doing a suppository everymorning. So our first thought was that he didn't do it when he said that he did. I spoke to him about it and he was insistant that he did do it. So my other thought is that he may not have stayed on the potty long enough coupled with the stomach bug that his little sister may have passed on to him.

Karston is growing up and with that growth he has decided to be a bit more
independent and do things for himself. This includes getting ready for school in the mornings. He no longer wants his mom or dad coming to his room to get him up, he wants to set his alarm and do it himself. That is the reason he may have not done the suppository long enough that morning. We have come up with a solution of doing the suppository at night before bed and that gives him the morning to do for himself.

Each time that we go through one of these new growing periods, we have to go through some trial and error of how that is going to work with his challenges. I know that each time is a good sign of him growing and maturing, but it also brings frustration and emotional conflicts. We are figuring this out and one day he will be totally on his own and self sufficient and it will be all worth it. On the one hand it is hard for me to let him grow into such a mature boy, but on the other hand I am so relieved to see that one day he will no longer NEED my help.

It's the brace again!

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!

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....

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.

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...

"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.

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.

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.

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.