Info for friends and family

Our Chameleon's surgery will be this coming Wednesday, July 20th. (not sure what time yet) We will begin staying at The Ronald McDonald House in Chicago on Monday night since he is scheduled for labs and Dr. visits all day Tuesday at the clinic.

Many people have been asking what we need. 

Most importantly we need prayer. Prayer for him, and for all of us. 

Due to the fact that this surgery had to be rescheduled and my mom had already made arrangements to be here the first time, it turns out that my mom won't be able to make it here a second time. This means that we could be asking for help with one or both of the other kids during the next 2 weeks. We will be able to have them downtown in the city with us, but there will be times that they will need a break. 

Also our dogs, Romeo and Juliette will need to be looked in on a few times a day. Romeo will Need to get outside for some exercise, but won't be able to do much. Juliette on the other hand would love for anyone to come by and take her to a park or on a trail for a walk. They are good dogs and have a very good nature, unless you show up in a mail delivery uniform. All they ever really want is some love and attention. 

Some people have also asked what kinds of things our Chameleon can have while at the hospital, so I have compiled a list of things that would be helpful.

follow this link to Send a free card


Things you can bring or send to Karston at the hospital:
Activity books with crosswords, wordsearches, and puzzles
Madlibs
a stress ball to squeeze while in pain
small snacks such as cookies
small stuffed animals
small plants
balloons
cards
or just call and ask what else he might need or want


Here is also a list of things that could also be helpful when planning a visit or call to the hospital.

Children's Memorial Hospital
2300 Children's Plaza (Fullerton and Lincoln Avenues)
Chicago, Illinois 60614-3363
To reach the main hospital: 773.880.4000

Visits by family and friends help the healing process but please note that our policies and hours vary by floor. For example, Critical Care (Pediatric Intensive Care Unit) and Neonatology (Neonatal Intensive Care Unit) have more specific visiting guidelines

.

General hours: 10 a.m. to 8:30 p.m. everyday

• Up to four people, including parents or guardians, are permitted at the child's bedside
• Per the Illinois Department of Public Health, children under 12 cannot visit patients in isolation
• To ensure the health and safety of patients and staff, visitors who have the following symptoms will not be allowed to visit:
  • Runny nose or nasal congestion
  • Sore throat
  • Cough
  • Fever or 100° 
• Please contact the charge nurse on your child's floor about cases that may need exceptions.

Sending a gift is easy through our hospital Gift Shop

Books, balloons, favorite furry friends and more are among the gifts available to order online for in-room delivery. Available Mondays through Fridays, the hospital Gift Shop delivers gifts within the hour and includes a free card with your personal message.

To speak to the Gift Shop, call 773.880.4601:

Before placing your gift order, confirm with the family that the child is still in the hospital. Unfortunately, gifts cannot be shipped to a child's home. So if a gift cannot be delivered, the Gift Shop will contact you and provide a refund.

• 8:15 a.m. to 7 p.m. Monday through Thursday
• 8:15 a.m. through 4 p.m. Friday
• 11 a.m. to 3 p.m. Saturday; and
• Noon to 4 p.m. Sunday.

Thank you to all of our friends, family, and neighbors that want to contribute to helping our Chameleon and our whole family through difficult times. 

Surgery Update...

So if you follow us on Facebook, then you probably are aware of our Chameleon's surgery details. Just in case I have readers that are not Facebook friends, allow me to fill you in on the happenings of the last month...

The surgery date was set for June the 15th. As the time quickly approached we were all working hard on getting ready physically and emotionally for the journey.

On May 27th we were able to take all of our amazing kids to Disney for a celebration vacation. We were celebrating two birthdays and for our Chameleon we were there for a last hoorah before a very slow Summer. We had so much fun and were so relaxed the entire time. We were all able to stay in the moment and just enjoy being together and having fun.
On the plane to Orlando I found myself humming a tune. I thought how nice it would be to have a theme song that would keep us relaxed and focused on what a great time we were having then instead of what will happen when we get home. I looked up the song that had been in my head and found that it was the perfect theme song for us. It was "Powerful Stuff" by Sean Hayes...
I sang this song anytime we were waiting for anything. Which we didn't really have to do much because we had gotten a wheelchair for our chameleon. By the end of the week, even my kids were singing this song, it was so helpful to all of us.

When we got home we started to get prepared. My mom came to town and we celebrated with a birthday party for Chameleon's brother. We also had a big backyard bbq with neighbors and friends. We had our pastor pray for Karston and his upcoming surgery.
Then two days before surgery was scheduled, Chameleon came down with a fever of 103 degrees in the middle of the night. It was a bit frightening and we contacted doctors as soon as possible. Sure enough the Surgery had to be rescheduled and test had to be done to find out if there was any kind of infection. The pediatrician put him on antibiotics right away and sent off for a urine test.

Two days later the test were all negative and most importantly Chameleon was all better. No more fever, he was playing outside and no longer in any kind of pain. Regardless the surgery had to be rescheduled and we were now in limbo and had little idea of what dates we would be looking at agian. There were a couple of dates tossed around, but the doctor's schedule was not really open until August and it was really up to her when it would be rescheduled for.

Just about a week went by and we were trying to make plans without knowing when our plans would be haulted with news of surgery. The call came today. The new date of surgery is July 20th. He will be in the hospital for 10days (approx. 'till July 30th) and then we will have 6 weeks at home of recovery with limited mobility.

So here we are again trying to get through the next couple of weeks, focusing on doing things as a family and making sure that we enjoy Summer activities as much as possible. We have three weeks to make plans and once again get prepared for what is ahead.

Our strength is in God. We know that He has a plan and that there must be a reason (that we may possibly never know) for having to postpone the surgery. This is all in God's hands and God's timing and we are learning every day to put our trust in Him. 

11yr old dreams...

So anytime we have asked Our Chameleon what he is worried about with his upcoming surgery, his first response is that he won't ever be a part of the football team. He has been concerned about this even before the words surgery came up. He wants to play football just like his teenage cousin and many of his friends.

Way back before we saw the doctors and realized that there could be a problem, We signed him up for football for the first time. We paid the money and went to the meetings and he was so very excited! Then he got the word that the doctors were not fans of their patients playing football. He was disappointed.
We talked about maybe finding a way to let him play and find a way to protect his back more than usual.

That was when we went back to the doctors and got the news that he would need Surgery. Football was out of the question. He was heartbroken. He had a hard time focusing on any worries of surgery because all he could think about was his football dreams ending before they started.

Well, last week we got a call from the football board members. They told us that they had taken a vote and unanimously decided to keep Our Chameleon on the team. They will give him a uniform and he will attend every practice and sit with the team during every game. On top of all that... they want to refund our money to us. Whew Finally some GOOD NEWS in a sea of worries. Our Chameleon was so pumped when he got the news.

He will get home from the hospital 2 weeks before football camp and we are hoping that his recovery has him moving around enough by then to make it to the camp and observe. In the meantime, we have a trip to Disney, his brother's Obstacle Course birthday, and a pre-surgery party to get ready for. Maybe our Summer won't be so bad after all!

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.

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.

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.