Fall 2012

Fall 2012
[learning to live a perfectly imperfect life]

How You Look At It

I have always liked sayings... sayings about love, attitude, dreams & success, and life in general. Years ago, I started jotting down sayings I came across that I liked, and every now and then -- especially times like this -- I open up my notebook and read a few.

"I am convinced that life is 10% what happens to me and 90% how I react to it." Charles Swindoll

I agree. I really do. And most of the time, I can be thankful... see the glass as half-full... rise to a challenge and make the conscious effort to learn from it...

but sometimes, I just want to tape up lots of colorful streamers, blow up some balloons, bake a really fattening cake with an obscene amount of frosting, and have myself an all-out pity party.

And at my party, I want to let everyone who comes (probably not many) know that "It's not fair." I want to cry and stomp my feet, and declare myself as no longer an adult. I want to go back to being a kid when all I had to worry about was cleaning my room and making sure I didn't get a pink lunch tray (because if I did, it meant I was in love with the other person who had a pink lunch tray.)

And then I want to tell everyone that it's even MORE "not fair" when what's crappy is affecting someone else I love. Someone else that has already been through a lot... someone else who IS a kid and SHOULD only have to worry about cleaning her room. (I think they did away with pink lunch trays, so she's all clear there.)

And when I'm done crying and feel like I'm going to puke because I ate too much cake, I announce that my party is over. I look around and realize that there were quite a few more people there than I'd expected. I assumed no one would want to come to a party where someone who had lots in life to be thankful for was pouting and crying and feeling sorry for herself. But I was surrounded by my parents... my sister, my husband's family, and countless friends. They came. They supported me.

And then I realized that I was ok. My party was over. And after I took down the streamers, popped the balloons, and cleaned up, I was ready to rise to the challenge... to make a conscious effort to learn from it.

* * * * *

I have to give you some background first -- a little health lesson, if you will. (I want to add a disclaimer that I am definitely not an expert in this but am simply learning from doctors, the internet, and other families who have lived this. So, I'm just "Learning As I Go.")

Kids with Down syndrome have a higher risk (than "typical" kids) of having Atlantoaxial Instability (AAI), which is a gap between the C1 and C2 vertebrae in the neck. (10% of kids with Ds have this but only about 1% of those require surgery, so it's pretty rare.) There is also something called Atlanto-occipital Instability (AOI), which is even more rare. It is a gap between the occipital lobe and the C1 vertebrae.

AAI and AOI are often a-symptomatic, which means there are no symptoms to clue you in that your child has this condition. Therefore, it is recommended that all kids with Ds have C-spine x-ray dones at around age 3 to rule out both AAI and AOI.

Okay, health lesson complete. Now, on to Rylee...

We knew about these possible conditions with children with Ds, and had an x-ray done when Rylee was 3 years old. Her doctor told us that she did not have either AAI or AOI... that everything looked good and we were "all clear."

Recently, during a routine appointment with Rylee's Developmental Pediatrician, the topic of C-spine x-rays was casually brought up. I said we'd had those done at age 3 and were all clear there. Her doctor was curious about the x-rays, (as he was not the doctor that ordered them) and so he pulled her charts. Turns out the x-ray ordered was not one in which you could determine the presence or absence of AAI/AOI. *sigh* Feeling frustrated yet confident there was nothing to worry about, we scheduled a repeat x-ray.

A few weeks later, I took Rylee in for her x-rays. She was a total champ (doctors' visits are never easy for us) and I was pleasantly surprised at how cooperative she was! We celebrated with a stop at the park on the way home.

The doctor called later that afternoon with the results... AOI.

Wasn't expecting it at all.

Her doctor said we needed to watch Rylee's physical activity very carefully until we found out more. (We had to re-plan her upcoming Birthday Party at a local gymnastics academy, take down our trampoline, and let all of her teachers/therapists know what was going on.) We know now that if she were to hurt her neck or fall on her neck or anything like that, it would be much more serious than other kids. (Not to be an alarmist... but easy paralysis or worse.) He then referred us to a Pediatric Orthopedic Surgeon.

After meeting with the surgeon, it became obvious to us that it was more serious than we originally thought. Here's my simple description of it... (please remember my disclaimer about not being a doctor.) When the base of the spine and the 1st vertebrae bend (mostly when Rylee extends her neck up) they are not staying parallel but instead are shifting and becoming uneven. Therefore, the amount of space Rylee's spinal cord has is being reduced. To find out just how much space the spinal cord does have, and to get an even better look at what we're dealing with, an MRI is recommended.

And so, that is what we'll do. Rylee is scheduled to have a (sedated) MRI done next Thursday, November 4.

So then what?

Well, we're not sure. Or maybe we think we know but aren't willing to let our minds go ahead to that.

It's such a tough balance. Taking things one step at a time. Not getting ahead of things... not planning for things we don't know about... not researching things that may never happen. I want to be thinking positive thoughts about an MRI with baffling results. (You know, I wouldn't mind it if Rylee threw the doctors for a loop. "I swear I saw AOI on the x-rays, didn't you? But you see here? On the MRI? Nothing. Hmmm. She's a little miracle.")

But we want to be prepared. We want to be realists. If and when we need a 2nd opinion, we want to have determined where that will be, and maybe even have an appointment set up. We want to be researching where the best damn Pediatric Orthopedic Surgeon is in the country. We want the doctor who could do a spine fusion surgery in their sleep. (Okay, maybe not our surgery...) We want to know everything we need to know.

Someone I was talking to about this asked if I was really mad at the doctor who ordered the wrong type of x-ray and gave us "clearance" years ago. And you know, I could be. But I'm not. The doctor made a mistake, and though I will be sure this doctor knows about the mistake so it is not made again, I'm not mad. Instead, I'm incredibly thankful that Rylee is okay... that after years of jumping on our trampoline and taking gymnastics classes and tumbling around with her little brother, nothing has happened. I'm incredibly thankful we found out now so we can keep her safe and prevent anything from happening in the future. And I'm incredibly thankful that I can share our story with other families.

(So, for a quick, but very important sidebar: If you have a child with Ds, here's the scoop!
When you take your child in to be x-rayed, it is especially important to be sure the doctor writes the correct orders and the radiologist follows through and gets the right views of your child's neck. They should take 3 x-rays from the side... one in which your child is looking down (flexion), one looking straight ahead (lateral), and one looking up (extension).

* * * * *

Many of our family and friends (you know, the ones who came to my party mentioned above) who already know about this have asked what they can do... this is what we're asking:

If you know anything about AOI, please share! If you know where research is being done on this, or where the best doctors & surgeons are to treat & repair AOI in the country, please pass it along! And if you don't know anything about this, but know of someone who DOES, please pass along my blog and ask them to read this post! (You can also send good thoughts to us next Thursday for Rylee's MRI... and visualize some baffling MRI results!)

Thanks for supporting our family.

* * * * *

When we walked out into the Pumpkin Patch, we noticed all of the small pumpkins had already been picked. So, what was left for us were the really big pumpkins... you know, the ones that you grab underneath and then it starts to slip so one hand grabs for the stem to balance it and the stem breaks off and the pumpkin goes tumbling onto the ground and you realize that it got a little squashed during it's tumble so you leave it for someone who wants a squashed pumpkin because you're looking for a perfect pumpkin for carving? Yup, that's all that was left.

Rylee takes off in one direction and Carter in the other. Jeremy and I split up to help with these monstrous pumpkins, because they will certainly be too big for the kids to carry themselves.

"Challenges make you discover things about yourself that you never really knew." Unknown

Good thing I never told her she couldn't do it. Not sure why I doubted her.

We know she can handle anything. She's proved it time and time again.


Mommy to those Special Ks said...

Please call me!! I have LOTS of info! Kennedy had spine fusion surgery for AOI in 2008. I'll email you my number. Hang in there.

Nichole said...

Carin-- We are sending you all of our best wishes and positive thoughts. Love-Nichole, Chez, Stella and Lily.

Anonymous said...

Carin, I will keep you in my prayers. I hope you can find a solution for this for Rylee. Stay strong and ask lots of questions and remember your partners are behind you. Please let us know how you come out. Love, Shannon Dirk

Anonymous said...

Oh, Carin! We will be praying for Rylee and her family. We will pray for wisdom for her Dr.'s, and strength to handle the diagnosis, and courage to fight. May God bless you with all the graces you need.
Jodi R.

Anonymous said...


01 November, 2010


Thank you for sharing!

Please rest assured, that you and Rylee are in the thoughts and prayers of persons and
families, all over the world, and will be even more so, on 04 November.

In September 2008, our 7 year old daughter, Annebeth, had an MRI with very “positive” findings—we were overjoyed, and relieved. We can offer you only “encouragement” and hope.

We wish the same for Rylee on her “special” day—We believe God watches over the innocent, and the small children!


Anonymous said...

Sweet Carin!
Whenever I read your blog or think of you and your wonderful family I always think of how blessed you are to have Rylee and how blessed she is to have you! You are so insightful, so loving, and so upbeat in light of all you have all been through. You have my admiration, my prayers, and most of all my love and positive thoughts. I know nothing of what you are dealing with but would give everything in my power if I could make it go away.
Much love and many hugs to all of you my sweet friend -

Anonymous said...

I am the one in the background that is Praying~~~
Ongoing prayer...
My heart aches for you and know that I care and am Here...in the background, Praying.
Pam Strohm

Anonymous said...

I'm a year 18 Partners graduate and Sandy just passed your blog onto us in an email. I'm originally from Cleveland and I know that there are two possibilities in that city that you might want to check out.

Rainbow Babies and Childrens' Hospital is a world-class pediatric facility and I know that they've done orthopedic research in the past. I don't know the status of their research and methods of treatment today (it's been several years since I left OH and moved to SD), but it couldn't hurt to check.

You might want to check out the Cleveland Clinic, also, it is world-renowned in many areas and is usually up-to-date on current research and treatments. Again, it's been awhile since I've lived in the area so I don't know the current status, but it couldn't hurt to check.

I'm very sorry for what you're dealing with and I hope for the best for you and your daughter. Your strength and attitude are both really admirable and uplifting, especially since it must be hard to deal with.

Good luck and best wishes,
Lisa Lynott-Carroll

Becky Robinson said...

Carin and family, thanks so much for sharing. You are in our thoughts and prayers. You are an amazing Mom just as Rylee is an amazing kid. Take Care!!! Becky R