Happy 2nd birthday, sweet Kate!
I can definitely say that I found this birthday much more celebratory than last year. When Kate turned one, we were 2 days away from meeting our neurologist at Mac. I knew something was going on with her - I bought her toys for her 1st birthday that were suitable for a 3 month old. I still remember shopping on a Saturday afternoon in St. Jacobs at the toy store near the red caboose. Our doggie had just passed away from heart disease and cancer and there I was shopping for toys for Kate, wondering what would become of her in the next few days. Geeze, that was hard.
This year is a lot better. Kate is meeting milestones in a good sequential order, she's just really slow at reaching them. I feel like Kate is on the verge of something...she won't stay still. She's become so motivated to do things. When I carry her around outside, she actually tries to get out of my arms. I don't know where she thinks she could go, but I put her into a stand and she'll start taking what are now her trademark big, purposeful steps! Kate has come so far...farther than I ever expected.
Today was a day of mixed emotions. We said good-bye to our physiotherapist at Blue Balloon, who we met one year ago this very day. We couldn't have survived this year without her. She was more than just a therapist. When Kate was being tested for AS, my very good friend who lives in Washington DC started a Novena prayer for Kate. He prayed that the right people would be brought into our lives who could help Kate AND help us. For me, that person was Kate's physiotherapist. Kate wouldn't be where she is right now if it weren't for her. In the meantime, there is no PT available at Kid's Ability for Kate. She will go from receiving 3x/week PT to nothing. It will be quite the change, but we will use the time to take a break this summer. It's time for a "normal" summer for us. As Jeremy told me yesterday, it's our first summer in four years without a child under the age of 2! We are due for a good one - 2009 was horrible as Kate wouldn't sleep after I fed her and 2010 was no better as we waited for her diagnosis.
We went out for dinner to East Side Marios b/c that's Jamie and Kate's favourite. It's unbelievable what Kate can eat! After dinner, I took Kate for a walk in her new stroller/wheelchair that arrived on Saturday. She really likes it, but I'm still having a hard time accepting it. It's another cruel reminder of what's happened to Kate and our family life, but it's a necessity that will help her develop good posture and stronger muscles.
Thank you so much to all of you who have answered my plea for votes for the Vivint contest. FAST is competing well with another group called Team Sanfilippo Foundation. I read about them because FAST fluctuates a bit and I wanted to learn about our competitor. If there could be something more tragic than AS, this is a likely candidate. I checked out their website. At the bottom of the info section, it says life expectancy is 10-20 years. My heart dropped to the floor and I immediately remembered the first question out of my mouth when our Dr. at Mac told us he was testing Kate for AS: what will her life expectancy be? He told me he thought 40-50 years, which I now know is incorrect. But for a few heart-wrenching days last June, I actually thought that in all likelihood, Kate would definitely go before me. The worst nightmare for any parent has got to be seeing their child pass before them, so I can totally appreciate how the parents of Sanfilippo Syndrome children must feel. I lived with knowledge like that for a few days last year and it rocked me to my core - I am amazed at how some parents cope when presented with utter devastation. To any parent out their who faces any struggle with their child, you are amazing. Thank you for giving your children good lives. It's the most important thing you'll ever do.
With that, I'm off to bed. Kate is doing exceptionally well and we are looking forward to a fabulous summer! If any of you have pools, feel free to invite us over!! :-)
Hello friends and family!
First, let me say thank you for tolerating my daily reminders over the past month and continuing to vote and spread the word for Kate’s Kause. We will know the official results on June 29th. I will try not to go nuts in the mean time!
Secondly, I have yet another favour to ask of all of you. I apologize in advance if you find this a bit heavy and long-winded. I want to tell you about FAST. The Foundation for Angelman Syndrome Therapeutics (FAST) was started by a hard-working AS mom in Chicago. It gives 100% of its donations to AS research and is working hard to continue to fund Dr. Weeber of the University of South Florida as he tries to convert his “cured” AS mouse into a human reality. FAST has an opportunity to win $250 000 in the Vivint Gives back online voting competition that ends Aug 27th. Note well, Dr. Weeber’s AS mouse “cure” only cost $100 000. One of the other Angel moms did a quick count after the preliminary stage and determined that we need an extra 200 votes/day to catch up to the leader, provided the leader doesn’t garner more support. Kate’s Kause can surely supply these votes. We are strong, powerful, committed and supportive. So now I’m asking for some more of your time – about 15 seconds a day – so you can make a difference in my child’s life.
I can’t truly say in my heart of hearts that I wouldn’t take Kate any other way. But I WOULD be lost without her. There is no doubt that I need her in my life as much as she needs me. If you can believe this, there have actually been times where I thought I was the lucky mom (over neuro-typical moms) b/c my Kate shows her love for me like no other child would or could. However, I would do ANYTHING to make her better, or even lessen her symptoms, the big one being the seizures. In the early days of the unknown, the AS testing, and AS diagnosis (aka when I lived hell 2010), I pleaded every day and night for an exchange: please spare my daughter in turn for me. But life doesn’t work that way. I know that and as a result, I am witness to a miracle named Kate. So here we are, with a very rare neurogenetic disorder, fighting our asses off (well, not completely off as mine is clearly still there!) and still finding a way to enjoy life. How can you help? How can you make things better for Kate? You can participate in the Vivint contest. Angelman Syndrome is the only neurological condition that has even a glimmer of hope of a therapeutic in the very near future. All other neuro conditions are just too complex. FAST is currently funding the testing of 4 drugs that are already approved by the FDA! Already approved = huge decrease in waiting for the drugs to become available to the public. Research needs money and it doesn’t have to be yours – Vivint’s money will do just fine! So log on and start voting TUESDAY JUNE 14TH. Spread the word to all your friends who helped with the Keg Thanks a Million contest. Please, do this for my little girl who gives so much love and happiness to everyone she meets and asks for only one thing in return: life itself.
Thank you. Thank you for taking a brief moment out of your day for Kate. She so deserves it.
Here are the instructions:
FIRST TIME VOTERS: (login process only needs to be done once – then it gets even easier!)
1) Log into Facebook
2) Then go to: www.vivint.com/givesbackproject and click on “Log in” upper right corner. You may or may not have to select “Allow”.
3) Then, scoll down to “Top Charities” and:
Click on “Central” region
4) Click on “FAST.” If you have trouble finding FAST, you can probably use this direct link as well: http://www.vivint.com/givesbackproject/charity/43
5) Click near bottom to vote. (Note that if you do NOT want a message to appear on your facebook wall that you voted for FAST, you can check the box "no thanks" before voting, but if you do post the message to your facebook, it makes it easy for your friends to add a vote for FAST by following your link, so it helps to post this at least once in a while.)
6) If you did it correctly you will receive a “success” message.
SECOND TIME VOTERS:
1) Go to <span>http://www.vivint.com/givesbackproject/charity/43</span> (Bookmark this page for daily voting!)
2) If prompted, log into facebook, through theblue login button at the top right corner of the page
3) Vote as you did the first time, wait for the "success" message!
Thank you for your help and if you have any problems with the process please let me know and I will help you through it. (I am basing my instructions on the nomination phase, so hopefully it will all still be accurate tomorrow!)
To say June will be a tough month is an understatement. It was June 1st 2010 when Cooper started collapsing on a regular basis and had to go to OVC to find out he had dilated cardiomyopathy in addition to his cancer. He passed away on June 16th. A week later, Kate had her appointment with a pediatric neurologist and was tested for Angelman Syndrome. Our world was officially rocked. Life as we knew it changed forever.
But I think we've all come a long way since then, especially Kate. Her development was basically stagnant until the end of February, when she started army crawling. We are now getting to see our child hit physical developmental milestones. And for those who've ever thought their children grow up too fast, watching Kate grow is way more enjoyable than I ever thought it would be. Kate's slow but progressive development has made us appreciate what a little miracle she is! And of course, we draw strength from our family and friends who've been behind us since the beginning, and a community that continually lets us know we're not alone. I know Jeremy and I both feel empowered after last weekend's Kaps for Kate concert. It's truly an amazing feeling.
Yesterday, we took the kids to Bolender park here in Elmira. There’s a toddler/preschool section and a school-aged section. Kate went on the swings and then we sat her in the grass to crawl around b/c even at 5:00, it was scorching! After a bit of watching her in the grass with her Dad, I remembered what another parent told me about inclusion when I went to the Integration Action for Inclusion anniversary in April: even if Kate can only do 20% of an activity, I should help her to do it. So Jeremy brought her over to the toddler section where Jamie was playing. The structure forms a perfect square with a tunnel on one side and 3 bridges on the other. I helped Kate to walk to the tunnel. She put her hand on the railing and took a few steps with me holding her under her arms. After a few steps, she would lift her feet off the ground and I’d remind her that her feet stay down. We walked to the tunnel, where she crawled through to meet Jamie on the other side. Of course, I couldn’t fit through the tunnel so I had to go the long way around!! I got her to her feet and she walked all the way back to the start of the tunnel, lifting her feet with big, purposeful steps. We did this cycle at least 5x, with Kate keeping her feet on the ground more and more each time. Jamie would meet her halfway, cheering her on and giving her a hug when she reached him. It was the cutest, most amazing thing. Honestly, when this child walks by herself, it will be earth-shattering!! So, even though I know there’s a lot Kate can do, I won’t just assume she’s happy to sing and then be done at the park. She’s going to walk these structures!! She’s so much more motivated – we can see that it’s coming…it’s still probably far away, but it’s coming!
Keep voting for Kate’s Kause in the Keg's Thanks a Million contest – we’re going to build a spectacular park where no child will ever doubt their abilities or wonder if they belong.
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.