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


abzta84 said...

Thank you for this, I too have been told that the likely hood of our son being born with CRS is more than likely as he is missing a vertabrae, his tail bone is malformed, and bilateral talipes.
Its reassuring to read this information, when all the docs can give u is the worst case scenerio.

Danielle said...

CRS affects the sacrum, so it would have to be more than just an upper vertebrae missing. But I'm glad you're finding the info helpful! If he is diagnosed with CRS, think about joining the message boards I have listed. The members are so knowledgeable! We'd love to have you.

Good luck!

Benedetta said...

hi! my name is Benedetta,from italy and i'm 23 years old...
I'm affected by CRS...
when i read this blog i'm really happy! with your words im not feel alone.
my doctor that saved me unfortunately he die. Now i don't know... i don't know if I one day can walk...
i hope...
with love...
bye Benedetta

Benedetta said...

can i have you contact??
benedetta deluca