The New AFO

Ok. so these pictures may not show you the differences that are so obvious when looking at him in person.

One difference that most people will probably not notice is the that there is less padding but will be much easier on his skin. No more sores and blisters from wearing the brace. Why? Because there is a silicone boot on the inside that softens the edges and the harshness of the brace itself.

Another difference is the lift in the shoe. Notice that the sole of the right shoe is much thicker than the sole of the left shoe. This is because there is a length difference in his legs. In the past, walking gave him the sensation of stepping down into a hole with each step. When he put these

new shoes on today, we had to laugh because it took some getting used to for him. He loved it!

His hips are much more even and he is feeling taller. The orthotist kept mentioning that this will be alot easier on his knees as well. It will take some getting used to, but we are all grateful to having him straighter and stronger.

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.