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.