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.