Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, June 26, 2008

Praying for Kennedy



Some kids have it rough, and then some kids have it ROUGH!!!! Meet Kennedy. She just turned 4 years old, and isn't she a doll? Well, here is what Kennedy has been up to in the last year.

Kennedy has Down syndrome. For parents of kids who have DS, the "L" word (Leukemia) is one of our biggest fears. We always feel like we're one blood test away from this horrible diagnosis. Well, a little over a year ago Kennedy was diagnosed with AML (this is a type of Leukemia) The treatment for AML is very aggressive chemotherapy. Thankfully, kids with DS have a higher cure rate than typical kids, but still...we loose many to this horrible disease. Kennedy and her family made it through her treatment. It was a rough road, but they made it. She's not completely out of the woods yet, but things are looking very good.

Just about the time Kennedy was finishing her treatment for AML, she needed to have her neck x-rayed. You see, kids with DS can also have this thing called Atlantoaxial Instability (or AAI) which is an instability in the neck. Only a small percentage of our kids have it, but it's still something they're routinely screened for around 3 years old. Apparently Kennedy didn't think life was interesting enough dragging mom and dad through the AML thing, so she popped up with another surprise. She doesn't just have AAI, she has AtlantoOccopital Instability (AOI) which is even worse. In Kennedy's case, hers was so bad that she was IMMEDIATELY put into a neck brace until they figured out what to do. To put it in very basic terms, Kennedy's head was just "resting" on top of her spine. One wrong move and she could be paralyzed for life. Kennedy's AOI is as bad as it gets.

But Kennedy's medical history is quite complicated, so it took the doctors awhile to figure out the who/what/why's and wheres of doing surgery to fix her neck. Tomorrow she'll be traveling from TN to Philadelphia, then next week she'll have surgery to have her neck permanently fused. She'll come out of surgery in a halo, then spend a week in the hospital, then a month in Philly before she can return home to TN. She'll be in her halo for the next six months!!!! and then they'll return to Philly to have her halo removed.

One has to find good things in everything. Kennedy's daddy has been serving our country in Afghanistan. (his second tour!) Tomorrow morning, as they get off the plane in Philly, Kennedy and her brothers and sister will see their daddy for the first time since December!!! He'll be here for her surgery, and stay until they return home to TN. I praise God that they have this opportunity to see their daddy, even if it's not for the best of reasons. They'll have the weekend together for some much needed family time, then Kennedy will be admitted on Tuesday, with surgery on Wednesday.

Please pray for Kennedy and her family. You can follow their story here on her mom's blog.

1 comment:

Mommy to those Special Ks said...

Thanks, Leah, for posting about Kennedy and your continued prayers! I can't wait until this is all behind us!