WELCOME!!

If you are reading this it's because you are family or a friend or someone who is suffering or has a loved one suffering from Chiari Malformation.

I hope that you can be educated and learn the strength and bravery that Kendall is showing throughout her journey...

Say a pray, give a thought, hug the ones you love....

Kendall Bug

Kendall Bug

Saturday, October 31, 2009

Happy Halloween


No news to report just wanted to share a picture of my rugrats doing their Halloweeny thing!!! 

Wednesday, October 28, 2009

10/28/09

As I'm sure you will all notice, this blog will be all over the place from time to time as my emotions are like a pinball game.  Some posts will be all about Kendall and her progress and some will be all about me.  Why?  Because it's good therapy and well, just BECAUSE! :)

Today has been a rough day.  Kendall stayed at her daddy's last night and I picked her and Peyton up after work tonight.  Her mood swings are so constant and jekyll and hyde anymore. I know it's the age and trying to grow up so fast but it still breaks my heart that a lot of the behavioral issues may be coming from the CM.

As I gave her a bath tonight I was rinsing the conditioner out of her hair and she looks up at me and says, "mommy, am I beautiful?"  It took back everything I had to swallow the lump that formed in my throat. My response, "Kendall, you are THE most beautiful 8 year old girl I have EVER seen".  What causes a child to ask that kind of question? LOL! Anyway, her innocence amazes me. She really has no idea how incredibly special she is. 

To be honest, she still does not know about the CM.  I am not prepared to tell her until after we see Dr. Bajwa on the 2nd.  I want to be able to answer her questions.  And a part of me is a little terrified of telling my baby girl that she has a condition that affects her brain and she is facing surgery.  She's a smart kid.  I am really asking for prayers for myself to gain the strength to be her rock as she goes through this.

I am positive that things will be ok. I am prepared for the worst and hoping for the best.

I am a mom. That is my FIRST and most important job. I am human.  I laugh, I cry, I hurt, I get angry. But most of all I understand.  I understand that my job as a mommy is to be there for my baby.  To love her and cuddle her and to be there to make her laugh and be a kid.  That is my goal.

Now if only I can continue to convince myself of this..........I feel so selfish with my emotions.

It WILL be ok.  It HAS to be ok.

Tuesday, October 27, 2009

The Beginning....

Little Miss Kendall had her school physical in the summer of '09 before going into 3rd grade. At her visit it was found that she had early onset of puberty so she was referred to an endocrinologist for further testing. In September she saw the endo and he scheduled an MRI to check her pituitary gland. I received a call on 10/9 with the results.....pituitary gland - NORMAL! YAY!!! Then came the bomb.....they found something else. A tumor. On the bottom of her cerebellum.


My heart sank. My throat closed. Every piece of me crumbled. The words no mother ever wants to hear. My baby. My little angel is sick.


Tears. Tears. And more Tears. Pull it together Kori.


10/16/09 - First visit to the neurosurgeon. NOT CANCER. Kendall has what is called Chiari Malformation. It's basically a herniation in her brain. Her brain is too big for her little skull so it's forcing itself to protrude outside of one of the cavities where the spinal cord connects tot he brain. Since the MRI she had was not intended for the Chiari, she was scheduled for a second one to check the flow of spinal cord fluid to and from her brain and to also measure the size of the malformation.


10/23/09 - Second MRI. What a trooper she is. She doesn't want to go inside the noisy machine again but sucks it up and does her thing. So grown up for an 8 year old. She argues a bit with the technician about what radio station to put on and finally gives up and tells him to "just shut the thing off then"! LOL! That's MY girl!!!


10/27/09 - Results. *****stomach falls to floor....again.***** The Chiari measures in at 1.3CM or 13MM. Based on my own research I know that the average size Chiari is about 7MM in children. Leave it to my child to do it BIG! Also the flow is severely restricted. Almost none at all. No wonder my munchkin butt has such bad migraines.


Next step...see neuro on 11/2. His statement: "Discuss our options. Surgery may be eminent" **gag**

What is Chiari Malformation?

Chiari Malformation (Arnold-Chiari) is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.



An excellent site that fully explains the symptoms, treatment and prognosis of Chiari is www.conquerchiari.org. Check it out! EDUCATE EDUCATE EDUCATE!