Finally time for an update...

Gosh - Has it really been nearly a year since my last post? It's definitely time for an update, so here goes...

First, I want to say a great big thank you to every who has been asking me for updates! It's heart-warming to know how many people are interested in watching Kaitlyn's progress and hearing about her struggles. I've always written this blog with a goal of sharing Kaitlyn's story of living with CP, the ups, the downs, and everything in between.

I'm one of those people who has a weird memory. I tend to forget the names and faces of people I went to high school with. I can't remember what I ate for breakfast. But I remember every number and date that made some kind of impact in my life. May 18, 2005 was exactly 10 years ago today. Chris and I brought Kaitlyn for a visit to the Special Infant Care Clinic at a hospital where she had been followed since her release from the NICU almost a year earlier.

We knew that she would soon be released from that program because they normally follow babies for about 1 year. I have to say that even though I knew she was clearly missing all of the milestones most babies hit (she was unable to roll over, sit up, or crawl at a year old), I still didn't worry that we were dealing with anything more than her progress being slow due to her prematurity. After all, the doctors told us at each previous visit "she'll catch up".

I call that first year "the honeymoon period". We were so happy that she survived some very serious medical challenges and made it out of the NICU that we just embraced every single second with her. So, when we were told on 5/18/2005 that Kaitlyn had a condition called Cerebral Palsy we were shocked. We were so surprised when we heard this that we didn't even know what questions to ask. We basically left there with a new diagnosis, a 1 page brochure on CP, and a complete lack of understanding about what this meant for Kaitlyn.

It's hard to admit that. It's hard to say that we didn't do all of the research on all of the conditions that Kaitlyn could be facing based solely on her prematurity and her low birth weight. It's hard to admit that we were oblivious to the fact that missing her milestones was a clear indicator that something was seriously wrong. However, I wouldn't change that year for anything. Having 1 year of her life believing that the worst was behind us and the best was yet to come was bliss. I embraced every smile, every snuggle, every moment with that precious baby.

Cut to 10 years later. Good grief - what a difference a decade makes. Chris and I could have probably gotten degrees in neurology, physiatry, orthopedics, neurosurgery and physical therapy with the amount of time we have spent researching Kaitlyn's condition and treatment options. We have spent hours upon hours driving to and from doctors appointments, therapy appointments, sitting in waiting rooms, asking questions, not understanding answers and asking again. Hours, upon hours, upon hours. We have seen doctors from North Carolina to Boston. We have made 3 trips to St. Louis so that she could have a surgery by a world-renowned surgeon. We have watched Kaitlyn struggle. We have witnessed her living with pain, enduring countless procedures, going through a major surgery, and put in more time in physical therapy than you can imagine. We have had to explain to a 3 year old why she couldn't walk. We have had to wipe away the tears of a 5 year old who couldn't understand why this happened to her, and we've had to tell a 7 year old that she was going to have to live with this for the rest of her life. Most recently we have been helping our now 11 year old prepare for the fact that she'll be going to middle school in a few months and there will be a huge group of new students that she doesn't know, and who don't know her. They'll stare, they'll ask inappropriate questions, and hopefully some of them will look past it all and want to get to know her for the awesome, silly, fun, smart, and talented person she is.

So, for those of you wondering how Kaitlyn is doing, I think the best way to explain it is through pictures. Enjoy!

She is now putting her braces on/off herself :)