Kailey's Updates

Well, as you all already know, there is never a dull moment with Kailey. Just when we start to get comfortable, something else gets thrown into the mix.


The newest installment of drama with Kailey involves seizures. I mentioned it briefly on my last blog, but at that point they had not escalated to the point they are at now.


Here is the whole ugly tale.


On Jan 28 I was getting Kailey ready for a cardiology appointment. My mother in law was over to watch the two younger kids while I took Kailey to the doctor. Mom was sitting in the chair next to Kailey, I was on the floor putting her shoes on. Suddenly Kailey's arms shook (well twitched) as did her head (think parkinsons shaking) and her eyes were fixed. I called her name a few times and she didn't answer. Finally after the third or fourth time of my calling her, she looked at me and said "WHAT? My arms keep shaking!" I looked at mom and asked "Did you see that? It looked like a seizure!?" Sort of questioning myself, thinking I'm being paranoid. Mom said well maybe she had a chill.


With in the next few hours Kailey had 3 more episodes like that. Two of them in the cardiology office, luckily in front of the nurse. Both times she got another nurse to come and check on Kailey. I asked them if they felt they were seizures and they agreed with me that they were.


I took Kailey to the Emergency room that afternoon where they chose NOT to do an CT scan or EEG, but to medicate her with Keppra to treat the seizures.


Over the two weeks following we noticed that Kailey's attention improved both in school and at home. She was sleeping better and complaining less and less about the constant nagging headaches that have been haunting her for the past year.


On Monday 2/11 my mother in law (God bless that woman!) watched Kailey for me while I took the two little ones to the doctor for the flu. By the time I came home mom mentioned that she thought Kailey was getting warm. I agreed, and went upstairs to get changed before giving her any tylenol. When I came downstairs Kailey was starting to have a seizure. It quickly escalated from mild to Grand Mal. It lasted longer than 5 minutes. And for the first time (amazingly) I had to call 911 for Kailey.


The Ambulance arrived in record time. The EMTs and firefighters who arrived were very comforting to us. This was an incredibly scary situation for us, and they were wonderfully reassuring.


Kailey was taken to the hospital where a CT scan was done. We are happy to know that these seizures have nothing to do with her shunt or her chairi malformation. And so, is there a reason for them? Not really. Just add epilepsy to Kailey long list of diagnosis.

Every time I think of this birthday, this big milestone, five years old, I end up in tears. I never thought we would see the day that my baby girl was a big kid. In my mind, five starts the big kid years. No more baby, as they come into their own. From the begining we were told she would have a compromised life. I personally never thought that she would reach a five year mark. For years and years I would never allow anybody to buy her clothes in larger sizes, for fear that one day I would have a closet filled with clothes that were never worn. All of that started to change two years ago.


After Kailey's last valve replacement we saw her start to blossom. She started growing like a weed. She started to thrive. As the days went on, we relaxed more and more. Accepting that there is no time limit on her precious life. We started to take her life one day at a time, with out the looming thought that it could all end at any moment. I mean, life is life... of course anybody's life could end at any moment, but somehow we don't live our lives wondering if today is dooms day. And so, as Kailey thrived, our fears fell to the wayside, and life became as normal and routine as it could be. Her closet has clothes one or two sizes larger then she is now. We dream of upcoming birthdays, vacations, and the future. She says things like "When Kevin is 16, I will be 15 right mom?" and I don't cringe! Because surely... when Kevin is 16... kailey will be 15!


This past year we faced a lot of ups and downs, but none that weren't tackled by Kailey in her championship way. Atrial flutters, mysterious stomach issues, leg surgery, chronic headaches, and most recently petite mal type seizures. But each new challenge that was brought on, was just a fleeting issue for Kailey. Thanks of course to wonderful doctors, nurses, teachers, and friends. Kailey tackles these things with out a second thought, and she never ever looks back. She never gets down. She is triumphant in all she does.


I can't help but get emotional as this birthday approaches. As I hear people sing Happy Birthday, I nearly fall apart. So many emotions that are just beyond words. I am filled with pride. I am filled with gratitude. I am filled with awe, and wonder, a bit of sadness, and a whole lot of love.


Each and every one of you who reads this has been touched by Kailey's amazing life story. A story that is still being written, but that has already inspired faith and hope and love in all that hears it. And each and every one of you that reads this, that knows of Kailey's journey, that sends prayers and positive thoughts our way, every one of you have touched our lives, even if we never spoke or met. For you are all the ones who hold us up when we are weak. You send us support, faith, prayer through distances unkown, and you empower us to stand tall and look forward not back. When we are filled with fear and uncertainty, you have all carried us through, helped us find solid ground, and given us the support we needed to help this child grow!


So, as this year five milestone approaches, I want to thank you... all of you for all of your love. From the begining when I was carrying her, to today I thank you for thinking of her, loving her, praying for her. I thank you for checking in on her progress, and for telling others about our wonder child. I thank you for spreading her message of faith, of miracles and of hope. I thank you for lending us the strength to make heart breaking decisions that worked out in glorious ways.


To my many friends across the internet, across the world, my stranger friends... I thank you for reaching out and not allowing distance and time to turn a blind eye to the journey Kailey has been on. I thank you all for your friendships and your support. You may be strangers to us, but your support has been felt from day one!


To my family, my friends, all those who have touched us in person, especially those who I am able to rely on with Kailey personally, with out all of you... I would really be a train wreck. I know that my controlling personality is a lot to deal with at times, and I thank you for standing strong by our sides.


Five years ago I had no idea how much others would mean in our lives. Five years ago, I had no idea I would ever feel the way I do today. Our lives are rich, and we are blessed. Thank you.

Kailey is doing amazingly well. She is in physical therapy 2x a week now and she improves in leaps and bounds. She loves therapy and school. She is quite the social girl these days. I see her blossoming more and more socially.

Its hard to believe that 5 years ago we were preparing for her birth and never expecting her to live. Now I can't imagine life with out her.

Kailey is a proud big sister once again, and she just loves her little sister Alison, even if she does cry a whole lot

**On a side note I would like to apologize for all of the spam that has found its way into the comments section of this blog. I will be working on deleting them a little at a time, but as there are thousands of them... it may take a while**