Somewhere over the rainbow…
So…two weeks into JK and Stella got Rhinovirus. We tried to battle it out at home but were having trouble keeping her stable so we had to take her into Sick Kids. She was a total trooper. Lots of pokes, x-rays, bi-pap, oxygen and the dreaded deep nasal suctioning. The team at Sick Kids is fantastic and there is nowhere else I’d rather be when she is so sick.
PICU is hell on us though as they don’t have parent beds in the room and sleeping in a chair is brutal. A drop in the bucket compared to what our girl goes through, but it’s hard to be at your best for her when you’re so tired and sore.
We are so grateful for the team of friends and family that pick up the slack during these crazy times at home and help us out with Oliver and George.
We can’t say enough good things about how Stella has transitioned to JK. She’s a total natural. Loves getting on the bus in the morning. Loves her teachers and EA’s. Loves her friends. And the best part, they love her. Everyone is taking such great care of our girl we couldn’t be more thrilled…or relieved.
Everyday she asks to go to school. We can only hope she keeps up this enthusiasm through high school!
After months of planning and lots of hard work we rolled out the first SMA family camp in Ontario! We had a great location just north of Toronto and we hosted 15 families (70+ people!!!) for four days in August.
We had a great time enjoying the pond (although it was way too cold to swim!), the beach, and the little park. But mostly we just loved being together.
We had some nicer weather our second day and played some giant soccer, adaptive bowling, and (finally) got to test out the drive through sprinkler that we’ve been planning and building. Kids and parents alike had an awesome time and we are happy to report that no power chairs were fried! Success!
We also got to enjoy a wonderful campfire with sparklers, singing, and of course smores!
Our third day we held the much-anticipated obstacle course. This event has every member of the family in a power chair trying to navigate the teeter-totter, bubble blast, bubble wrap and safety cones in a race for best time. Surprise, surprise, the kids kicked our butts. But it was heaps of fun and very humbling for the parents and siblings!
We also had time for crafts that afternoon. Tie dye, rock creature painting, beading and cards.
That night we had our camp-themed luau. We had a great time all dressing up, dancing, and even some karaoke. We also participated in the National SMA awareness candle lighting ceremony which was held that evening across Canada.
Our last day we did some super fun photo booths with the kids. The pictures turned out great and the kids had a blast being super heroes and princesses! Our niece Jessica did a great job organizing and supplying all the costumes and backgrounds!
We ended our fabulous weekend with a group photo. We are so grateful to all the families that came out for our first year. We are also forever indebted to our wonderful volunteers who worked so hard and helped so much! And lastly, the whole event wouldn’t have been possible if it weren’t for our sponsors. Because of their generous donations we were able to dramatically subsidize the cost for families.
I can’t believe that we have a school-aged little girl! Where has the time gone?
When Stella was first diagnosed as a coping mechanism, we forgot all the milestones and lifelong dreams we once had for her. And we lived in the present. Every day on its own. With our precious girl and how she was doing at the time. And slowly, as the days turned into weeks, and the months turned into years we now are occasionally caught off guard by how far we’ve come. How far Stella has come.
To say that the idea of sending Stella to full day junior kindergarten is daunting and the amount of work involved that has gone on to make this a reality has required a small army of people is an understatement. To say we are beyond excited for Stella in this new adventure of friendship, learning and independence is also an understatement. Worth every email, phone call, school meeting, follow up email, reminder phone call, observation meeting, report findings, case conference, repeat, repeat, repeat. You get the idea.
We have had a very positive case meeting at the school with the key players including CCAC who will be co-ordinating her nursing support and equipment needs, as well as the Peel District School Board Special Education Liaison who will ensure Stella’s ongoing needs are met and supported, and the school administration, teachers and support staff who have been warm, inviting and very accommodating. We have also had the added work of co-ordinating before and after school care as both Myles and I work hours beyond the school day. Again we have been (surprisingly) happy with their acceptance of Stella in their programs and their willingness to acquire the extra help Stella will need.
We know there will be bumps in this road, but we are keeping our eye on the prize of one very happy little girl who couldn’t be more thrilled to be heading off to “big girl school” in September! We are in awe of our beautiful girl and all her accomplishments. We also know how lucky we truly are. And how far away this goal seemed just three years ago. It gives us so much hope to dream of the future.
A few weekends ago we headed out Ottawa way, to Perth Ontario for the 3rd annual Cure SMA at Little Rock Farm event hosted by Jenna, Eddie and Mason Stewart. Mason was diagnosed with SMA type 3 in the spring of 2011 and the family has been raising money and awareness ever since. We had a great time joining the walk, enjoying the delicious BBQ, music and dancing. Stella loved giving Mason rides on the back of her wheelchair and these two have been having Skype dates ever since! Thanks Stewart family for your hospitality and for raising an astounding $30,000 for SMA!
Happy Birthday beautiful girl!
Miss Stella you know what you want, you’re sassy, and you’re sweet as pie! We are so proud of you and all the accomplishments you have mastered in your short four years. You are so smart and quick to learn new things. You’re inquisitive and ask one million questions every day. You have such a kind heart, sympathizing with others, despite your own obstacles. When you put your little arm on my should and say “its okay mama” it makes me smile and weep all in the same instant. You love your family and friends and we were so happy to get to celebrate our amazing girl with most of them over a number of days at the end of April.
Stella really wanted a rainbow sprinkle princess party. And so that’s what she got! Myles outdid himself with the cake. There may have been a crazy run on food colouring and sprinkles at our local Loblaws! And I hit the computer, getting my digital craft on. Its hard in the era of Pinterest not to go overboard, but we do have so. much. fun. putting it all together. And Stella actually does appreciate the effort, noting in a hushed voice “its soooooo beautiful”. melt. We hired in a princess who was AMAZING. Stella was speechless for a few minute. A rarity. And then wouldn’t stop talking to Rapunzel. They sang, they did makeup and nails and then we blew out the candles on Stella’s wickedly yummy and uber gorgeous cake. And we all had a fabulous time!
Help us celebrate Stella turning 4 by helping us to fight SMA!The annual Rebecca Run in Newmarket is July 5th this year and we will be doing the 3km walk/run/roll.If you are interested in joining us, please sign up online by clicking here:http://www.events.runningroom.com/site/?raceId=10062 and join “Team Stella”. You do not have to pick up the race kit ahead of time as long as you arrive early enough the day of – you can register then. If you are new to the race, please email me firstname.lastname@example.org with your size preference as we have custom shirts available for everyone. The event is rain or shine. And we’ve had both! Please make sure to dress accordingly. Lunch is provided for every registered participant.If you are unable to join us physically, you can donate to finding a cure, treatment, and supporting families with SMA, through a monetary donation by clicking here: http://www.giving.runningroom.com/hm/ and pledge an athlete – Myles Bartlett with your contribution.We thank you for your continued to support of Stella, our family, and to one day finding a cure for SMA!XO S+M+s+o
We had a great time taking Stella bowling for the first time in a social we planned for the Ontario Chapter of FSMA! It was so much fun!!!