Wednesday, November 5, 2008

Recreation Links

Thank you to Michelle, Micah’s mother, for these great links.Gym Supply has these scooters like the ones they have in the gym at school. We found ours on Ebay. A home-made one was also used for years.

Plasma Car. This thing is AWESOME! Micah is on his second one and all the kids in the neighborhood have one now as well as all his cousins. Again, we bought our on Ebay but last Christmas I found them at Fry's Electronics cheaper than Ebay. I typically bought the 4-pack off Ebay just because I knew so many people that wanted one and we all went in together to split the shipping.

Micah also has a bike that he peddles with his hands. You can see a pic of that on his myspace page.The Ambucs give their hand-powered AmTrykes away for free. Ask your PT for a referral to them.

These are the Benik Knee Pads that we received at Texas Scottish Rite Hospital in Dallas. Micah used the XS for the longest until he developed his callus on his knees. Now he crawls on concrete with no problems. UGH!!!

His most prized possession is probably his 4-wheeler. It is a battery powered Power Wheels. My husband re-wired it so he would have a push button on the handle bars since he can't use the foot throttle. He goes everywhere on that thing.

I'd love to include more links/info from other parents of kids with CRS. Please send me your stuff!

Wednesday, September 24, 2008

Kurt Fearnley Wins the Marathon in the Paralympics

Kurt Fearnley ended up winning the marathon in the Paralympics after his bad luck in the earlier races (see Kurt Fearnley’s Week from Hell). I liked what he said after winning: "It was as if it was just building in tension and building in hype. I knew in myself every single bad thing that happened just meant the next good thing that happened was going to be twice as good.

Tuesday, September 16, 2008

Kurt Fearnley in the 2008 Paralympics

The Paralympics have been going on in China for quite some time now, and they aren't getting a fraction of the publicity the Olympics got. One of the big names in the news is Kurt Fearnley, who is ranked number one in the 1500 meter, the 5000 meter, and the marathon. He has been having some bad luck lately with first being assigned the wrong lane and then being hit from behind during the 1500 meter race yesterday: Kurt Fearnley's Rotten Luck.

Fearnley has sacral agenesis and is Australian. For more, see Athletes with CRS/SA.

Sunday, September 7, 2008

Wheelchair Ballroom Dancing

I saw this great story about a woman, JoAnne Fluke, who has CRS and is a wheelchair ballroom dancer: With Groovability, Wheelchair Dancers Dismiss Notions of Disability. In describing why she likes dancing, she says, "I get the opportunity to really express how I feel. It feels like it doesn’t matter that I have wheels instead of feet. It’s in the heart. It’s in the soul.”

Friday, August 29, 2008

You Know You’re the Parent of a Child with Caudal Regression When…

… you have explained to strangers that your baby did not break both his legs; he’s in casts for a different reason.
… you have walked out of doctors’ offices after hearing, “Caudal what?”
… you have imagined having your child’s legs removed to improve his quality of life.
… you know the names of several different methods of treating constipation—and how to use them.
… you have battled with neurosurgeons, urologists, and orthopedic surgeons and not let up until you got answers.
… you are best friends with the woman who does the referrals at the pediatrician’s office.
… you notice that half the hospital staff knows your child’s name.
… you have been frustrated trying to find pants that fit your child. And forget about the shoes! :)
… you have spent the day on the phone with the insurance company, the night standing next to your child’s bed after surgery, and the middle of the night wondering if it’s all your fault.
… you know the difference between an HKAFO, a KAFO, and an AFO and kind of get the difference between CRS and SA.
… you have shopped for stickers to put on a walker or crutches.
… you can be casual when talking about your child’s underformed spine, curved spine, or dislocated hips.
… you let your child walk with crutches knowing his hips are not in the sockets, let him walk on his hands knowing his spine is misaligned, and let him do stunts balancing on his walker or wheelchair that take your breath away.
… you have told relatives no, not all children potty train the “regular way.”
… you have worried that your child would be made fun of at school but then see how sociable and friendly she is and think maybe it will all be okay.
… you know all the best features in a wheelchair or forearm crutches or a walker.
... you have a whole stock of Velcro and shoe inserts in all different colors.
… you have cried your eyes out from sheer joy when your child crawled for the first time using only his arms, took one step with her walker, or walked on his hands.
… you have watched miracle upon miracle unfold before your eyes with a hilarious, active, creative, beautiful, and wonderful child, and you wouldn’t change him for the world.

Thursday, August 28, 2008

Miracle Buckley

I saw this story about a 19-year-old girl, Miracle Buckley, who has CRS/SA. She is studying to be a concert pianist. She says, “I would say there is a testimony to my name because somebody in my condition is not supposed to be here.”

Monday, May 19, 2008

Amputee Runner Wins Right to Try for Olympic Spot

An exciting new development: Amputee Runner Wins Right to Try for Olympic Spot. Of course, people are arguing about this, that using these prosthetics is somewhat like using performance-enhancing drugs. This is a strange new development, that having a disability makes you "advantaged" rather than disadvantaged. It pretty much blows the old pity thinking out of the water, don't you think?

Monday, April 21, 2008

Urinary Nerve Rewiring

Another exciting new development in urology: urinary nerve rewiring.

So far they are trying this for people with spina bifida and spinal cord injury. Of course it is also exciting for people with CRS/SA.

"The children previously required the insertion of a catheter to empty their bladder or endured significant incontinence. But as a result of the surgery, they are beginning to void on their own and are also seeing improvement in bowel function. Initially they signaled the bladder to urinate by scratching or pinching their leg or buttocks. But, remarkably, in most patients the brain was able to take over and control urination normally.

Another story on this can be found at Gaining Control.

Friday, April 18, 2008


I saw another news story today about a man with CRS. He is a computer teacher named Adam Holmes. He says, ""Admit your limitations so you can get around them." I think that's a good attitude for us parents to think about. We tell Jordan that he just has to try stuff and find a different way to do things sometimes. We don't want to admit that he has limitations. But maybe this is a good way to look at it--admit the limitations and then find ways to get around them.

Thursday, April 10, 2008

Kid with CRS on Dr. Phil Show

A woman I know through online message boards was on the Dr. Phil Show this week with her son and family. Her son, Jaya, is 1 month older than my son, Jordan, and like Jordan, he has CRS. He doesn't have feeling or movement in his legs, so they have been debating getting his legs disarticulated at the knee.

Click here and page down to A Heartwrenching Decision.

This is a very difficult decision that she has struggled with. I can see both sides of the argument. It is hard because it would be terrible if Jaya had this done and then blames his mother when he gets older and questions why she had it done. It's his body and maybe it should be his decision to make later in life. He won't be a child forever. And maybe there will be medical advances that could help Jaya someday, things that are unimaginable now. How many years ago could we not even imagine pacemakers, MRI, corneal implants, heart transplants? They can GROW BLADDERS now. It seems like nothing is impossible.

However, it's not that I think he should be "fixed." Walking is a big deal to most people. Seeing someone using a wheelchair conjures up a lot of feelings of pity--that poor person can't walk! When someone like Christopher Reeve says, "I will walk again someday," it inspires us. It is understandable that that person would want to walk again! Who wouldn't?

But that isn't how every wheelchair user actually feels. As Bad Cripple” writes: "I wish my teeth were straighter; I wish my son got better grades in school; I wish I could afford to do many things that are beyond my economic reach. What is not on this wish list is the desire to walk. What I wish for is something I have been working toward my entire life: to be treated equally and not be defined by my wheelchair."

Wheelchairs should be viewed as devices that create independence and mobility. The orthopedic surgeon we see has been trying to get us used to the idea of a wheelchair since Jordan was a baby. He stresses that we use cars every day as a way to get around--just another kind of wheelchair, he says. Really, there is no shame in using a wheelchair. Our son is about to undergo serial casting and might need to use a wheelchair. When I tell people about it, I can see them visibly flinch. It is going to take some getting used to, and it will probably be hard seeing him using it. But we just have to realize that it's a good thing to have one to get around in.

But back to Jaya: we don't need to wait to "fix" him with these great medical advances that might come along someday, with the ultimate goal of having him walk. The important thing is giving him a better quality of life. I know Kristi wants to do what's best for Jaya, and that is what is getting lost in the debate on the message board on the Dr. Phil site. She has researched it and is doing what she thinks is best for her child. She doesn't wish him any harm, only to improve his life. None of us should judge her for that.

Tuesday, March 25, 2008

Coolest Video Ever

This guy, who does the The Rolling Exhibition, never says that he has CRS/SA, but his condition must be somewhat similar. But this is the coolest video: Kevin Connolly Auto Bio

Tuesday, March 4, 2008

Urology Research: Growing Bladders

Some exciting research is being done on growing new bladders from people's own tissue! These are starting out being targeted to children with spina bifida, which is exciting because CRS/SA is very similar to SB in some ways, at least in its effects on the urology system.

The company, Tengion, that is working on this is actually located just a few miles from where I live! I'd love to get some kind of job there. Anyway, here is their site: Tengion. Some news stories about it can be found at:

Tengion Trying to Grow Human Organs

Tengion Inc. Presents Tengion Neo-Bladder

Cool Research: Walking Devices

I've seen a lot of very exciting new research lately about walking devices. First is Mini-generator Relies on the Power of the Walk. "Strapped to the knee, it could use energy generated by walking to run medical and other devices." I think if they could do this, they could surely use this on an orthotic or prosthetic to help in walking.

Then also, Prosthetic Limbs Give Wounded Soldiers New Life. This is another exciting development--these prosthetic limbs pretty much walk on their own!

Of course, I'm thinking about the way things like this could be used in people with CRS/SA. I do think there is too much emphasis on walking sometimes. If someone can get around in a wheelchair, with orthotics, or whatever, that's great. But if something like this can help people have more mobility and independence, that would be a good thing.

Tuesday, February 26, 2008

New Parents: Start Here!

Just like the purpose of this blog, this list is meant to be something I wish I would have had when my son was first diagnosed with CRS. On six ultrasounds when I was pregnant, they didn’t find anything unusual about him. But when he was born, it was clear that he had some issues with his legs and feet. My husband and I had no clue, and the sad part was, neither did the doctors! No one really ever told us anything; we had to go out and find the information on our own. It was a very stressful time, but somehow we managed to get him to the specialists he needed to see in a very short amount of time.

This list may vary, especially if your child is diagnosed in utero or later in life. But for me, this is the list I wish I would have had when Jordan was first born.

1. Schedule appointments. Your child needs to see a pediatric urologist, pediatric orthopedic surgeon, and pediatric neurosurgeon (not neurologist) as soon as possible.

The urologist will do studies to make sure your child’s kidneys are fine and that there is no reflux.

The neurosurgeon will probably have an MRI done to look at your child’s spine and get a baseline to compare with as your child grows.

The orthopedic surgeon will examine your child’s spine, feet, and legs and will address any issues. If your child has clubfeet, the doctor may try casting your child’s feet.

2. Schedule an evaluation for early intervention services. My son has received 2 hours per week of physical therapy since he was 2 weeks old. Early intervention can also provide occupational therapy and speech therapy.

3. Check into Medicaid. Pennsylvania has a loophole under which any child with a disability can receive Medicaid at no charge, and it's not based on the parents' income. I don't know about laws in other states, but you should check into it. We have Medicaid for our son's backup insurance, and it covers the primary insurance's copays. It has been a life saver for us!

4. While you’re waiting around for the appointments, gather information from trustworthy sources. CRS is such a rare condition that most doctors have never heard of it. Our son was diagnosed by a geneticist. You may have the same experience. The doctor may give you some information, but it will most likely be worst-case scenarios, and it most certainly will not be based on YOUR child. Your child has not been featured in any medical textbooks. Your child is not a statistic. Your child is an individual, and just like ANY individual on this earth, he or she will have accomplishments and failures. Some things will be more difficult for him, and some things will be easier than for other people. Don’t listen to any doctor who tries to lay out your child’s life for you when your child is a newborn! Or even when she is a toddler, or even a teenager! Keep this in mind: Your child is an individual.

When my son was about 1 year old, the orthopedic surgeon told us that our son would be in a wheelchair when he got older. Only 6 months later, the same doctor said our son would be out of braces someday and would not even use a walker or crutches to walk; he’d walk all on his own. It was then that it was truly confirmed for me that no doctor could ever lay out the course of our son’s life. Things may be predetermined by God—again, also debatable—but they are NEVER predetermined by anyone in the medical profession.

But back to gathering information. Look at the facts that you read on web sites (some starting links are to the right), but realize that these are broad “facts,” and that your child is an individual who has never before been seen here. The most valuable source for me has been other parents of kids with CRS and also adults with CRS. You can “meet” them on message boards. These parents and adults with CRS know more than any doctor can ever tell you about living day to day with the condition.

5. Start a binder or file to organize medical records. As time goes by, you’ll see what works best for you. I use an expanding file organized by specialty. I don’t like having to punch holes in papers and insert them in a binder. But if you enjoy binders, use them! Every 6 months, I ask for all of my son’s medical records. If you prefer, you can ask them at every visit to give you a copy. It is also helpful to order copies of all medical imaging is done. Most hospitals can give these to you on a CD at no cost! These are helpful for you to have on hand in case you ever want to get a second opinion; then you won’t have to wait for records to be sent. Also, it’s just nice to have the records on hand so you can review them at your leisure or when you feel like dealing with them!

6. RELAX and enjoy your new baby! You’ve done all you can for now, and you have to just celebrate the new little person in your life. Your baby will bring you more joy than you ever could imagine. You don’t know it right now, but you are in for the most wonderful adventure of your life. There will be hard times, times when you feel like giving up, when you blame yourself, when you think you can’t go on, but you will also have the complete opposite times—times when you cherish “the little things” more than other parents, times when your child makes you burst with pride you never knew you could have felt. Having a child with CRS is a life-changing event, with much more good than bad. As another mother of a child with a disability wrote on her blog, “My heart is breaking for you, but it also knows the joy that will come to you.”

“Amazing” sung by Janelle
The morning cold and raining,

dark before the dawn could come

How long in twilight waiting

longing for the rising sun

You came like crashing thunder

breaking through these walls of stone

You came with wide-eyed wonder

into all this great unknown

Hush now don’t you be afraid

I promise you I’ll always stay
I’ll never be that far away

I’m right here with you

You’re so amazing, you shine like the stars

You’re so amazing, the beauty you are

You came blazing right into my heart

You’re so amazing you are...

You are

You came from heaven
Breath of God still flows from you
The beating heart inside me

Crumbled at this one so new

No matter where how far you wander
For a thousand years or longer

I will always be there for you

Right here with you

I hope your tears are few and fast

I hope your dreams come true and last

I hope you find love that goes on and on and on and on and on

I hope you wish on every star

I hope you never fall too far
I hope this world can see how wonderful you are

You’re so amazing, you shine like the stars

You’re so amazing, the beauty you are

You came blazing right into my heart

You’re so amazing you are...

You are

Thursday, January 24, 2008

Athletes with CRS

Sometimes I worry because we have always told our son that there isn’t anything he can’t do, yet the doctors have said he shouldn’t do contact sports. This is because of his fused cervical vertebrae and also his kidneys, which are located lower than usual and therefore aren’t protected by his ribs. How are we going to break it to him that he can’t do some sports? However, I am seeing that there are tons of sports he can still do. I have already gotten him into swimming, but there is so much more! Anything is possible.

Kurt Fearnley from Australia has won several marathons, including last year’s New York City Marathon, in the wheelchair division. He also won at the 2004 Olympics for wheelchair racing. (This is not an official Olympic sport yet; this was just an exhibition event.)

Then there is Bobby Martin , who has no legs and plays college football.

Kevin Michael Connolly, is a photographer who also skis. (Note: Connolly never says he has CRS. In fact, he says he has a "spontaneous birth defect." However, I include him here because a lack of legs is sometimes characteristic of people with CRS, mainly from disarticulations.)

Tyler Walker also skis. He says, “I don't want to be viewed as a group of people who are missing limbs and are allowed to do an event just to make us feel good," Walker said. "I would feel really good to be an inspiration because I'm a good athlete or good at skiing, not because I'm in a wheelchair or I mono ski. There's a big difference there.

"When we achieve that, we'll be truly equal."

Monday, January 7, 2008

The Rolling Exhibition

Someone sent me info about this guy, Kevin Michael Connolly, who was born without legs. He has traveled the world taking photos of people staring at him. It doesn't say anywhere that he has CRS/SA, but it seems like he might. His photos are amazing: The Rolling Exhibition

And here is an ABC story about him: Man Without Legs Harnesses Public Gaze

He talks on his site about why people stare and why they want to create stories to explain his condition. The people in his photos all have a similar confused look on their faces. When people stare at Jordan, they usually smile and cheer him on. "You're doing great!" they shout. That can annoy me a lot of days, but I usually try to ignore it. No one has ever taken much notice of me, so it's hard going from that to seeing my son started at wherever we go. But I can imagine that it's hard, too, going through your whole life being stared at. I still can't understand why people do it, and especially why they feel the need to cheer on Jordan. How do they know he's "doing great?" Maybe last week he didn't need the walker, and he's doing WORSE. They have no clue. And as soon as I "handle" one of these starers, another one springs up in his or her place. I can't fight against it. It's just going to happen, and I have to accept it. But more than that, I have to make sure that he can accept it and deal with it in a healthy way. It's kind of hard when I have so many problems with it myself.

Tuesday, January 1, 2008

Starting a Foundation

I'd love to start a foundation for CRS/SA. If anyone knows anything about starting one, please get in touch with me at Also, if anyone is interested in getting involved in a CRS/SA foundation, also email me! I have met some great people on the message boards dedicated to CRS/SA, and I can see that kind of support continuing through a foundation. I think it's great for the kids to meet others who have the condition, and of course the support the parents get through other parents is also very helpful. I am going to look more into how to do put all of this together, but I don't know a thing about it, so I need help, please!

Happy new year!!!