March is a big month in our family for birthdays. Happy birthday to all March babies, especially Grandma Leen who turned 90 on the 28th! We love you GG!
It's been an amazing month...so amazing I don't want March to end!
On Wednesday March 23rd (the crazy snow day), we drove to Toronto so Kate could have her first EEG at HSC. We fasted Kate in the event they would need to sedate her, but in true 'Kate fashion', she was able to do the EEG without sedation. The technician hooked up 25 leads to her head, wrapped her head in gauze so she couldn't pull them out, and then wrapped her body with one arm out so we could hold her hand. She did great! She is so brave and strong. It was harder on us than her...I just hated seeing her get hooked up. It was a cruel reminder of Kate's reality. We waited an extra 90 min after the procedure to see Dr. Minassian and learn the results. The EEG showed no seizures. More importantly, he was really pleased with Kate's progress and health and gave Jeremy and I a lot of credit for the excellent care and love she receives. It was music to a parent's ear! And so nice of him to say.
The very next day, Kate accomplished her first transition out of sitting and onto her tummy. Jeremy took her to physio and called me at work to tell me about it. It was super cool! He managed to video it on his BlackBerry. As Uncle KP put it, Kate works so hard for every little thing that comes so easily to everyone else. She really is a true miracle.
On Saturday March 26th, we attended Aaron Spurgeon's 9th birthday party in Drayton. Aaron is a local Elmira boy who decided he didn't need all the presents he would get from his birthday attendees - we wanted to donate them to Kate's Kause. Aaron raised over $400 from his family and friends and single-handedly promoted inclusion and acceptance. He is a wonderful new friend for our Katie-Kate! Both Kate and Jamie loved every moment at the party. Kate loved all the attention and proved how social and comfortable she is in big crowds. We were sad to leave, but felt a huge sense of elation and exhilaration at the new friends we'd met. We could feel the support and the message from Aaron, his family, and his friends was clear: we are not alone in this journey. Thank you so much Spurgeon family. We will never forget what a difference you made in our lives.
One last thing: I got a call from the volunteer group who runs the Pancake breakfast at the Elmira Maple Syrup Festival. Kate's Kause has been selected as one of the recipients of their fundraising efforts! So be sure to stop by Elmira on Saturday April 2nd (Christina and Liam's birthday!) and have a yummy pancake breakfast - it's for such a worthy kause!!
As a young child, I was fortunate enough to go to Disney World on our family vacations to Florida to visit my maternal grandparents. It always made me happy to be there - I loved the characters, the shows and parades, and the general feeling of euphoria found within the Disney gates. As I grew older, WDW was still one of the happiest places to visit. Now, I am even more appreciative of the Disney magic. Disney sure does it right! It is the place to be for anyone, but especially if you're a special family. It doesn't feel so bad or different to be a special family at Disney World. We are treated with so much kindness and respect. The staff go out of their way to make your visit as positive as possible. We will continue to vacation there while Kate's health permits us to - it is one of the few places we can vacation with a child who's needs are as special as Kate's!
We were so lucky to share this magical vacation with Grandma and Grandpa Meissner! Jeremy was so delighted to have his parents experience the magic that can only be created by Disney. I got Grandpa Fred a "First Visit" pin at guest services when I got Kate's stroller = wheelchair accessible card and he proudly wore it all day long! We were able to do 8 attractions and lunch in only 6 hours thanks to our "fast pass" Kate! What a wonderful family experience...we will never forget it. Thank you for living it with us, Grandma Terry and Grandpa Fred! We love you guys so, so much!
To my parents: I can't thank you enough for using your points and promo flights to get us to Disney. I don't know how I can ever thank you for your generosity. But please know that trips like this rejuvenate us, give us strength, and above all else, give us hope that our lives will always maintain some form of "normalcy" despite whatever AS can throw at us. Thank you - you two are amazing.
It was so nice to have a trip like this right now. A year ago right now, it was settling in that Kate's development wasn't where it should be. A year ago right now, as we faced the unknown, I lived in a constant state of turmoil and anguish. I remember thinking Kate would need a CT scan or an MRI to rule out brain atrophies and how awful it would be to see a 9 month infant face a huge MRI machine. I was so scared. It was a terrible feeling. In 2 days from now, Kate will be going for her first EEG to get a baseline and check and see if she's been seizing. I don't think she has been, but she's definitely shown signs of possible seizures. I am anxious and worried, but mostly I'm afraid of seeing my baby girl strapped to half a dozen leads to get this procedure done. That fact she needs it is tragic and breaks my heart. However, knowing Kate, she'll rock it b/c she's my tough cookie! It will be harder on mom and dad than her, I'm sure, or so I'm hoping!! I hope I can write with good news on Wednesday!
Take care and say a little prayer for our Kate.
Kelly is Kate's devoted, caring, Type-A mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003.