Spina Bifida Clinic

Yesterday we took Karston to the Spina Bifida Clinic, at Children's hospital downtown, for his annual check ups with the Neurologist, Urologist, and Orthopedic. If you need to catch up on the history of Karston's birth defects, you can click here and/or here.

In the early months of 2007, we were driving downtown everday for 5 days a week so that they could do therapy on his bladder and bowels. We were extremely dissapointed last year when we were told that the therapy was not helping his bladder and we needed to find another solution. We continued with the suppositories every morning for his bowels. We told at that time that we needed to start a routine of self catheters at home. We were all scared and not sure if this would work and stressful it might be on our family. The first couple of weeks was very stressful as we help Karston do the catheter. One day he decided that he wanted to try and do it himself. He did it and there was no pain, and no struggle. Suddenly it became the solution we had been waiting for. Over the last year we have had ups and downs and have had to also add a liquid medication three times a day.

We also had to have his brace replaced once during the year. As I have mentioned in previous post, he is really active and his brace tends to snap in half very easily. In an effort to make having a brace something fun and not a negative thing the brace company will transfer a character onto the brace. In the past he has had them transfer to it several super heroes and other fun animals. This time he got a flying dragon. He loved it! Well, when school was starting we went to get Karston some new tennis shoes we realized that his "new" brace was getting too small. We knew that we had appointments coming up at the Clinic so we decided to wait on making another appointment.

Every year we go to these appointments with a list of questions that we need answers for. This year was no different. The difference is that the questions this time were not about solutions to problems and there were no disappointing reports of failed solutions. Our questions this time were very limited to what kind of studies were advancing technology in Spina Bifida. We were asking questions about the future instead of the present, about future prevention instead of what we need to get through the present situations.

I think that in the past I have said over and over that I trust God and that if he chooses not to give us the miracle of a healing for Karston than we will look forward to his design and purpose for Karston's life. The truth is that inside I was still wrestling with the fact that God "chose to do nothing." Yesterday, for the first time, I saw the entire situation differently.

Instead of focusing on what God chose not to do for us, I could clearly see what God had done for us. He has helped all of us to grow and mature through this situation. He has helped us through the unknown and gotten us to a place where we are now able to see the future. Karston is now at an age and maturity level that he is able to care for himself. He is able to do what needs to be done and to see the consequences of "trying to get away with" not doing the necessary procedures. We can all see now a time in Karston's near future in which he feels more like a "normal" kid. Sure he may take a little longer getting ready in the bathroom in the mornings and he may have to go to the restroom on a timed schedule and he will continue to need a brace on his leg, but life will no longer have intrusive interruptions and questions of wonder surrounding each moment.

Anyway, I'm sure you all are wondering what we did find out at the doctor's office yesterday. First of all we got him fitted for a new brace and this time he got to fighter jet planes transfered onto it. He is very excited about going back in two weeks to pick it up. The Orthopedic doctor aslo ordered the brace to be made with carbon to keep it from braking as frequently. Karston had a large open wound on his foot from his skin being so dry and they were able to clean it up and start it's healing process. The Neurologist said that he looks great and that it is very important to keep a close eye on him over the next few years. Apparently his puberty years are a time that he could have a retethering of his spine. But, right now he looks great! The Urologist said that if the suppositories, liquid medication and catheters are working than there is no need to try anything new. She did give us some larger catheters to try and help him drain a little faster. He was so surprised when he used it this morning and saw the urine coming out so fast. His muscle test on his foot came back stable and they seemed to think he was doing great! So Good reports all the way around. It was a good day, until he got car sick on the way home. We pulled the car over to the side and let him puke for a little while, and the rest of the day was just as good as the first.

I know that this is a long report and I appreciate you sticking with me through it. You can continue to pray for him that as he grows physically his spine will not retether and that as he grows in maturity his self confidence will also grow with him. He is a great kid and I don't tell him near enough (even if I were to tell him everyday it wouldn't be enough) that I love him and I am very proud of him for all that he has had to go through in his almost 9 years.