Our MRSA Saga

When we were in the emergency department for the broken femur in April, they did a routine nasal swab to look for MRSA. They do that now before every surgery. Oh, he had to have surgery on his femur, by the way. So, it turns out that he DID have MRSA! Before the surgery, they gave him vancomycin for the MRSA. They admitted that he probably got MRSA because of his many hospital visits!

Then when he was in the hospital, all the nurses and doctors who came into the room put on disposable gowns and gloves. The trash can in the room was full of these gowns and gloves by the time we left! But when we went home, I asked about it, and they said there was nothing we needed to do about MRSA. I then called and emailed a few people from the hospital when we were home, and both of them said that it wasn't a big deal, that many people have it, etc. I argued back and forth, and she even had someone from the group that developed the hospital's MRSA guidelines email me about it. All he did was copy and paste the same old information. But this didn't satisfy me because my son was about to have another surgery, this one with an external fixator around his foot. And basically 100% of these get an infection. What if he got MRSA in it???

The orthopedic surgeon did agree that we should try to make sure the MRSA was gone. So over the summer, I applied a nasal medication to both of his nostrils twice a day for 2 weeks. Then he was tested for MRSA again. The result was negative! He then had to be tested again at least 24 hours later to make sure it was really gone. This time rather than driving an hour each way to have him tested at the hospital, I tried to make it easy on us and took him to his pediatrician, which is only 15 minutes away. They had us go in the back red QUARANTINE door. It was kind of spooky going in there, wondering what other infectious diseases we would catch by being in that area of the hospital. I was not too pleased, either, that the entrance was not accessible, with a full flight of stairs we had to go up. Thankfully, Jordan can go up stairs on his crutches (although he did break his arm in four places a few years ago going up stairs!).

Well, it looked to me that the physicians assistant did not do the nasal swab correctly. But the pediatrician called within a few days and said the results were negative! I was so relieved! But sure enough, when the results appeared on the hospital's website, they looked strange, not at all like the previous results. After emailing the PA for the orthopedic surgeon's office, the PA told me that the pediatrician's office had ordered the wrong test! So it was back to the hospital for yet another test! Argggh!!!! Finally, after a few days, the results were in--negative for MRSA and MSSA. FINALLY! This took five months. But it goes to show you, make sure you or your child is tested for MRSA before surgery. Not all hospitals do this yet, but when they do, they say it cuts down on infections. I just wish they would treat each patient as an individual and not just copy and paste information that having MRSA is JUST FINE!

Introducing the International Sacral Agenesis Caudal Regression Association

I haven't blogged in quite a while, but in the meantime, the International Sacral Agenesis Caudal Regression Association (iSACRA) has been founded. I'm proud to say that I am a founding board member of iSACRA and helped get it started along with several wonderful, very dedicated people.

On June 6, we will be celebrating our second anniversary. Our Facebook group now has almost 650 members! And next week we are having our first really big fundraiser, a 5K in Virginia! I think there are exciting things ahead for iSACRA, and I look forward to continuing to get to know the members.

Great New Site on Caudal Regression Syndrome

Jessica, who has CRS, recently started her own site with information about CRS. It is a great site with lots of first-hand helpful information. She has a goal of forming an organization on CRS as well. Check out her site at Caudal Regression Syndrome Association.

I especially like her Recommended Articles, which include an article for parents that would really be helpful early on as well as articles on walking for kids with CRS, how to handle staring, having a support system, etc.

She also has information on sports, wheelchairs and other equipment, and how to meet other people with CRS. All around a very helpful and great site!

504 Plan for a Child with Caudal Regression Syndrome

When looking for info on preparing for my son's 504 Plan meeting, it was hard finding anything specific to caudal regression, of course, but also hard just finding example 504 Plans at all, especially for kids with orthopedic impairments. I thought I'd share the plan that was finally finalized as well as some links that were helpful in preparing it. I also used a template for parents, called the Parent Input Sheet, that was helpful. They used my info to put onto the plan, although they greatly shortened it.

Parent Input Sheet
1. What do you feel is your child’s disabling condition that necessitates that he or she have a 504 plan?

2. How does it impact his or her daily life activities?

3. How does it impact his or her educational program?

4. What necessary accommodations do you believe your child needs in order to be successful in school?

Sample 504 Plan for Caudal Regression Syndrome

CHAPTER 15 SERVICE AGREEMENT

Student Name:
Date of Agreement:
School:
Grade:
Birthdate:
Age:

Reason for Service
Student is transitioning into a school-aged program from preschool. His primary disability is Orthopedic Impairment. He has a medical diagnosis of caudal regression syndrome/sacral agenesis, which has affected his pelvis, legs, bladder and bowel function. In addition, Student has a hearing loss in his right ear. He cannot sit pretzel style and uses a cushion when sitting. Student ambulates with a rolling walker or crutches.

Student’s kidneys are low in the front of his body, not up in the back like in most people. Therefore, his kidneys are unprotected by his ribs and could be damaged if he has a blow to the abdomen. He plays normally with other kids but must avoid contact sports (being too rough, tackling, etc.).

Student also has some fused vertebrae in his neck, so it is like he doesn’t have some of the “padding” between the bones in his neck. He should not do any activities that will put stress on his neck, such as “heading” a ball or doing somersaults.

Because the nerves to Student’s bowel and bladder do not function reliably, he is not fully potty trained yet, and the urologist does not foresee continence for Student without surgical intervention (which would take place when Student is around 8 to 10 years old).

Latex Precautions
Because of his neural tube disorder and frequent surgeries, Student has a high risk of developing an allergy to latex and natural rubber and must avoid being in the same room with latex gloves, Band-Aids, balls, balloons, erasers, and so on.

Medical Accommodations

• Bathroom breaks: Student will have regular bathroom breaks spaced at preset intervals with times to be determined (especially after eating and after physical activity).
• He will go to the nurse’s room for assistance.
• He will have extra changes of clothes and Pull-Ups kept at school at all times kept in the nurse’s office.
• Student will be allowed to take extra bathroom breaks as needed.
• Student will not be exposed to or near latex, including gloves, Band-Aids, balls , balloons, erasers, and so on.

All adults working with Student will be notified of his latex sensitivity.

Parent and School Nurse will meet once the building Master Schedule has been determined to best support Student at the beginning of the school year, for his medical services.

Recommendations: Proposed Physical Therapy for Student is 90 minutes/week. Services will be a combination of push-in and pull-out with ongoing consultation between classroom teacher and staff. Fall reassessment will occur for PT services to be adjusted for the 2009-2010 school setting. The preschool school transition evaluation is attached.

School Accommodations

• Use of a walker or forearm crutches to ambulate the school environment
• Seat cushion provided by parents
• Seat cushion when attending performances, assemblies or prolonged periods of time (student chair when needed)
• Ongoing written communication between parents and teacher
• Preferential seating for hearing – teacher to face Student’s left side when speaking to him or delivering instructions
• Wheelchair provided by parents for field trips as needed
• Parents will provide written permission for Student to be lifted on and off a bus for any District provided transportation
• Avoid Contact Sports and any activities that put stress on his neck ex. “heading” balls and doing somersaults.

Transportation: Parents will provide transportation to and from school.

Note: Student’s full Preschool evaluation, Physical Therapy evaluation, Parent Input document, and article on Caudal Regression Syndrome are attached to this document.

Please indicate agreement to the above plan by signing the appropriate line below.


_____________________________________ ____________________
Parent(s) signature Date

_____________________________________ ____________________
Parent (s) signature Date

_____________________________________ ____________________
Principal’s signature Date

Additional Info on 504 Plans
Here are some helpful links on 504 Plans:

What is a 504 Plan
The Parental Advocate
Section 504 Information
Accommodations for Kids with Mobility Impairments
504 Plan

Universal Design
We debated with them back and forth about putting something about classroom accessibility into the plan. However, they kept coming back to their point that the classroom has to be accessible for ALL students, not just our son, so it's not an accommodation. When researching this, I did find some good links on universal design, though, which may be helpful if you do want to insist on something about classroom accessibility in the plan. These links include:

Applications of Universal Design
ADA Accessibility Guidelines
A Checklist for Designing Spaces That Are Welcoming, Accessible, and Usable
The Accessible Classroom

Medical Record Keeping and "New Symptom Log"

Keeping track of your child's medical records is a huge undertaking if your child sees a lot of specialists. I try to get copies of his records every 6 months. I write to the hospital and ask for certain dates of records. They charge you if it's over a certain page count, so it's good to keep up with them.

I try to keep the records filed by specialty rather than throwing them in a big cardboard box, which, admittedly, is where they've gone recently. I have an expanding file holder so I can put the papers in where they belong. Some people like to put their records in a binder, but I find that takes an extra step with punching the holes! Also, I'd need to have an entire binder on ortho, another one on uro, etc--they wouldn't all fit into one binder.

A new thing I've recently thought of is a "new symptom log." I started an Excel spreadsheet with columns: Date, Symptom, and Notes. I might add another column called Resolution or something like that. But this is really nice for keeping track of a new sign or symptom your child has.

My son recently started moving his neck in a strange way to the side, jerking it back and forth. He says his neck is "stiff." I opened the log, thinking this was the first time he'd complained of a stiff neck. But then I saw that there was an entry from a month before that he complained about a stiff neck after his PT class! I never would have remembered that, especially not the specific date it first showed up.

This log does make me feel like an obsessive mommy, but with the amount of strange things he has had--everything from tibial torsion to a lump on his rear end that turned out to be bursitis to a finger that stayed "stuck" that was diagnosed as a trigger finger--I feel like this symptom log is something good to have to keep track of the strange small things that might turn into something big but usually just happen to scare me half to death!

If you have any medical record-keeping ideas, post a comment and let me know!

Kids in the News

Two great kids with CRS were recently in the news. The first is Ganem Mohammad Al Muftah, who plays a lot of sports, including ice hockey.

The second is Cody McCasland, who was recently featured in several stories, including With five pairs of legs, I feel 10 feet tall! and Boy, 7, hopes to follow success of Bladerunner Oscar Pistorius.

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.”

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.

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.”

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.”

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.

Limitations

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.

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.

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

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.

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
shining 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

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."

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.

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 twxee@aol.com. 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!!!