Ways to Pray...

If you are of the praying kind (and even if your not) here are somethings that we are asking our friends and family to pray for while we go through this tough time.

1. That the stress and worries of the unknown will not overcome us and take us down.

2. That the surgery will not affect the bladder at all. His bladder is finally at a normal size and has low pressure which has caused a great deal of relief and accomplishments for him.
The doctors say that there is no real way to know what will happen to the bladder after surgery. It could stay strong or it could get weak. This is a much bigger deal than I can explain in a blog. If you would like more details on how to pray for this one, just ask.

3. That in spite of spending the whole Summer recovering from Major Surgery, he won't miss out on Summer activities. That he will get to have a some Summer before having to go back in for his Orthopedic Surgery.

4.That his recovery in the hospital will go by quickly due to the fun that nurses and other hospital personnel bring to the patients and that he would not be in pain while recovering.


5.For his brother and his sister: His brother is very close to him and is also very scared of loosing his best friend. He is only 8yrs old so it is difficult for him to express to us exactly what he is thinking and feeling. His sister is much younger and doesn't even really know what is going on. Please pray that they don't feel less loved, left out, or any other kind feelings that could come from their parents giving their brother so much attention.

6. That our trip to Disney in late May, will be so memorable for him and his brother and sister and all of us as a family. That this trip will be more memorable to him in the future than the surgery that comes after it.

Thanks for all of your prayers, and support.

Double Edged Spine...

After a MRI, CT scan, CMG (bladder testing) and Bone Scan we got the news we have been waiting almost a month to get.

Surgery...

The testing showed that his bladder had doubled in size in the last year. This actually seemed like a good thing. The Urologist told us that if it had been the first time to ever see Karston he would be excited at the size and pressure of his bladder, BUT the drastic change so suddenly had him worried.

The worries of his feet remained the same and the CT test and Bone scan were done to determine what to do next. The Bone scan tells us what age he will stop growing and just how to slow down the growth of his longer leg to let the shorter leg catch up. The Bone scan says that his bones are age 13. What does that mean?  Well it means that our Chameleon would be about age 13 when he would reach his maximum height. So then that means we need to start now with slowing down the longer leg. This entails tiny incisions around his knee to scrape cartilage that is on the growth plates. That is the least invasive procedure that needs to be done. He also has the high arch and the clawed toes on his right foot. This is due to tendons in these areas being pulled really tight. The plan there is to make such small incisions (they won't even need stitches) to be able to loosen the tendons. That's not all, in looking at the foot that needs the orthotic (brace) the doctor was concerned that the foot turns inward and is becoming misshapen. This is the most invasive procedure that will need to be done. The Orthopedic Dr. will go into the foot through the heel and move the heel bone over to line up with the tibia bone. This will require a pin the back of the foot.  All of these surgeries and procedures will be done at one time so the plan is that after surgery he will be in non weight bearing cast on both legs for 3 weeks. Then we will go back in to have the pin removed from his left heel and then a second cast (this time weight bearing) will be put back on the left leg for another 3 weeks.

The changes to his feet and his bladder all indicate one thing: Spinal Re Tethering.

So the plan is Spinal UnTethering surgery for June 15th. He will then be in the hospital laying flat for 10 days with a spinal drain. Then he will come home and take it slow, but have 6 weeks of recovery time. That puts the foot surgery at the earliest being early August.

This has all been a huge deal for us to process and think about.  We have a trip to Disney World in Florida planned for late May through early June so we have decided to make the most of that trip and every moment up to the surgery dates so that we can give our Chameleon better things to think about. No worries until it is time to worry.