testing... 1. 2. 3...

So we begin many test at the Spina Bifida clinic in April.

April 6th- CMG or cystometrogram This will be the test that tells us whether or not surgery is needed. They will be testing his bladder to see if there have been any significant changes since the last time that this same test was done, which was one year ago.

April 18th- CT Scan and MRI of the Spine. This test will be to determine if there are any cyst or other reasons for concern on the spine. Anytime a child has had a tethered cord, an CT Scan and MRI of the Spinal Cord will always then show that it is tethered so that is to be expected.

Also on the 18th...   bone age scan  This will show them at what age Karston will stop growing and exactly how tall he will be. Then they will be able to slow down the growth of his longer leg so that his shorter leg will catch up and he will once again be even. Yes, he will be shorter than he would if they didn't do this, but I believe it is well worth the inch to inch and a half that he would be shorter, just to be even.

Another test that will be done later is a Gait Analysis.

At the moment I need to go and get ready to drive into the city to pick up Karston's newest AFO (Ankle Foot Orthothoses (orthosis = brace.)  

These pictures are of the brace or AFO that he has been wearing. We will also be picking up his new Etnies shoes that the Orthotist put a one inch lift inside the sole of the shoe. This will give our Chameleon more stability and balance. I will post new pictures when we get home and can hopefully show you the difference it will make for him.

Blindside or Good side?

Yesterday was our annual check up at the Spina Bifida clinic. Just another trip downtown to see the doctors and know that he is growing and maturing.

We started with a muscle test. There was cause for concern...

His right foot, the good foot (the one that has not had any problems in the past) was not getting the same results as before. The arch in his foot was hyper extended and his toes were pulling up in a clawing fashion. These are all things we have noticed recently been didn't know it would be a concern. The Orthopedist is more concerned than the Muscle test therapist. He orders xrays of his legs and his back. Panic starts to set in for me.

The xrays came back clear. The Orthopedic Dr. says that if it is just these concerns with the foot that are going on, we can be concerned with that later or even just watch it and not be concerned at all, BUT if there are any other issues that arise with the other doctors than we will have an issue of Spinal Cord Retethering.

A tethered spinal cord is a disorder in which a child's spinal cord is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal.

As a child grows, the spinal cord must be able to move freely inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can permanently damage the spinal nerves.


So then we proceed to see more doctors, take a break for lunch and then come back for more doctors. When we finally see the Urologist we are excited to explain the Really Great things that have changed with his bladder. He is staying dry all day, (no leaking between caths.,) he is staying dry at night (no need for a pull up anymore,) He is able to know for himself when he needs to pee instead of just doing it because it is time to do it. We have been so proud of these improvements.  The Urologist then told us that while these may or may not be good changes, ANY changes at all are cause for concern. We also talked about the string of UTI's he seemed to have from October through Jan. Turns out those are not really infections but could possibly be symptoms of constapation. Apparently if you go to the Pediatrician and tell them we suspect a UTI and then the child gives a sample through a catheter, there will always be bacteria in the sample. Then because there is bacteria the Pediatrician will say, Yep looks like an infection and prescribe antibiotics. The Urologist asked us to next time try no antibiotics and see how long it takes for it to go away on it's own. I pray this doesn't happen again anytime soon, because the biggest symptom is intense pain and it is hard on all of us.

Then the Neurologist came in to tell us what she had discussed with the other doctors and their findings. She wants to order an MIR on his spine and a CMG which is a bladder test. These two test will determine whether or not he has a tethered cord again. If he does have a tethered cord we will go on to talking about surgery. In the meantime we are just waiting with uncertainty.

Our Chameleon was also devistated when he heard the Neurologist say that Football could be a much more dangerous sport for Karston than it would be for any other kid. If he got hit in the spine, he could have serious damage. Regardless of the other news we got during the day, this was the hardest news for him to hear.

Last night as we all hit the pillows, the devistation of the days news hit him hard. I layed on his bed with him and talked him through the process of surgery and recovery. I let him cry and tried to answer all of his questions calmly. I stroked his hair as he fell asleep. As I left the room, I noticed his brother in the next bed, also crying. I put my arms around him and spoke to him until he too was ready for sleep. All the while hearing my little girl in the next room crying in her bed. She was sad that mommy couldn't tuck her into bed because she had to be with the boys. By the time, I got to my Princess' room she had fallen asleep too.

It was a rough night but I know that God has us in his hands and we are right smack in the middle of God's plan.

a perfect fit...

So a few weeks ago we went to the city to see the Orthopedic doctor because Our Chameleon was having pain in his knee when he would run or when he would sit for a while and then stand up. We had to see a different doctor because our regular Orthopedic doctor was on vacation. She measured his legs and found a huge discrepancy. Yes his legs have been measured before, but the discrepancy has only been 1/4 of an inch or maybe 1/2 an inch. Sure a discrepancy is a discrepancy and still needs to be addressed, but before they have always given us a wedge to put inside of his shoe under his brace. Well, you can imagine how that works for a 9, 10, 11 year old boy. He kept forgetting to put it in his shoe and then before too long he had lost it. I could not drive an hour into the city and an hour back home just to pick up another wedge so we have been making do without it. Well, it seems that this last growth spurt had one leg growing at a slower rate than the other (which we knew about.) So now there is a large difference. The answer was to have a 1inch lift placed permanently on the outside of his shoes. Well, that requires NEW SHOES! YAY!

The Othopedic doctor then looked at the files and told us that the Orthotics department had been holding on to a brace for us for months and we should go there to pick it up. We walked over there and met with our usual Orthotist. He had a brace all right. I guess with dad's death and school starting and then winter setting in, the message had gotten lost along the way. Our chameleon tried on the brace and it fit. It needed some adjustments and then needed some padding and finally after an hour we walked out feeling confident.

One week later, our Chameleon told me that his foot had been hurting. He showed me two huge blisters and one had opened up already. We immediately switched back to the old brace. One blister went away, but the other caused a major whole in the side of his foot. I called the Orthostist right away. He said we will scrap that brace and start over. Apparently it was not as great of a fit as we had hoped.

So now they have molded his foot to make a brand new brace and he has chosen a skull design to have on the back of it. As for the 1inch lift? We are looking into getting him some Etnies and then the Orthotics department will put the lift on the bottom and then cover it in shoes tread so that it is not an obvious adjustment.

We go back to the City on March 15th to see ALL of the clinic doctors and to pick up his new brace and shoes with lift.

TO BE CONTINUED...

Such a relief...

I wanted to share with all of you some really great news! Because of the nature of this news we have had to be very subtle of our reactions and how we share this news, but everything in me wants to SHOUT it from the roof tops.

Our Chameleon's Spina Bifida has had many difficult challenges for us. We have had moments of frustration, sadness, and sheer exhaustion, but also some moments of teaching, learning, and building character within all of us. From the time that he was just a newborn and had to have surgery on his tiny little spine, the doctors told us to expect it to take much longer for him to potty train. Bathroom issues have been the biggest obstacle for him and for us as parents. We have found things that worked such as the suppository every morning, the catheter on a 2-3 hour schedule throughout the day, and the daily pills he takes to keep from having accidents between catheters.

He did potty train late, but has Always had to wear a pull up to bed. I have silently been concerned about his future. I have questioned (in my own head) 'will he have to wear pull ups when he is married one day?' So I started looking into options of cloth diapers for older kids and adults. Not much luck. The one or two places that I did find, they still look like a diaper and could still be embarrassing. This has been much more of a concern to me than I have let on, simply because there was really nothing we could do about it.

About two weeks ago, our son asked if he could try going to bed without a pull up that night. We made sure that he cathed right before bed and had nothing else to drink. Everyone was relieved when he woke up dry. The next night we tried it again with reluctance. Again he woke up dry. So our good news is that he has gone just over two weeks without wearing a pull up and has woke up dry every morning!!!! YAY!!! He is still on a schedule with his catheter and at times does have to be reminded when it is time, but I have been noticing for a while now that when he does miss a scheduled Cathe., he is still able to feel that he has to go before he has a major accident. He has several times gone to Cathe without being told or reminded to do so.

So the good news is that my little boy is not just growing up, but maturing inside and out! His body, his emotions, his attitude, everything about him is now PRE-TEEN. And I am so very proud of him. This may go without saying, but please don't mention this to him and there is no need to congratulate him on these improvements. I am basically letting you all know this so that my swelling heart doesn't explode with being so extremely proud of this progress.

"An All New Karston"

Karston has come a long way in the last several years and that was very evident when we went in for a urology appointment today. The nurse there had not seen Karston in 2 years and was shocked at how much he had matured. She commented that he was an all new Karston this time. The procedure we were having done today will tell us just how much Karston's bladder fills up before he has leaks. We go back in next week to talk to the doctor about his results and options.

We also went back to the Orthotics department at the Spina Bifida clinic today too. Our Orthotics guy, Brian, commented that it had been a long time since he had seen us. It has been only since September, but over the last year he got used to seeing us monthly. So why did we have to go back in today? Yep, you guessed it another broken brace. Karston's life has gotten a little more active now that he has started playing in a basketball league and is "training for boot camp" with his friends at school. This time Brian mentioned to us the possibility of a different kind of brace that will be more effective for a more active child. This new brace will have a spring in it to help him with lifting his foot and especially when he runs and jumps. When we go back to the clinic next week we will be picking it up and trying it out!

Karston is growing and maturing in many ways and we are so proud of the progress that he has made. I will try to post again next week after getting some more results.

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.