Saturday, August 23, 2014

Viral Challenges...

I hate Prader-Willi syndrome. I hate everything that it does to Ellie, and the stress it causes our family. It interferes with our holidays, with going out, with every meal time. It means I can’t sleep if we don’t have a nurse, and that needles and pills will be top of mind in our household until I’m old and grey. I think about it when I wake up, and I think of it while I try, and fail, to fall asleep.

PWS is everywhere in my life.
I have been thinking, a lot, about what we can do to change things, and it really is all in the research. My cookie sales are decent, and it’s creatively rewarding for me to be able to do something I love, while contributing to research at the same time. Of course, it’s getting harder and harder to maintain order in my kitchen, with Ellie’s increasing demands around food.

Our walk this year was a success. But, despite having raised almost $29,000, I feel like the wind has been taken out of my sails.

It takes everything I have to ask friends to donate, to spread the word that PWS needs funding. We’ve been fortunate, and are very, very grateful, to have many people support us, but more choose to do nothing. At the end of every walk, I’m left feeling completely drained. The research into PWS treatments is far-reaching, and would have a huge impact on the general population. Did you know that more than 1.4 BILLION people in the world are overweight*? If a cure could be found for the Hunger of PWS, the treatments could undoubtedly be passed on to the rest of the world, reducing all the secondary diseases caused by obesity.
There’s a craze sweeping the internet: The ALS Ice Bucket Challenge. To date, the challenge has resulted in donations of over $62.5 MILLION dollars. My Facebook newsfeed shows little other than videos of everyone dumping ice buckets on their heads. I’m flabbergasted at how many people are participating. Don’t get me wrong, ALS is a horrendous disease. It is one association I have supported through cookie and cash donations. Our family tries to support as many research foundations as possible, especially for the diseases that affect our friends and family. We don’t have a lot, but everything we can, we give.

ALS affects only 1-2 in 100,000 people. PWS affects 1:15,000.
ALS funding in the last month is at $62.5 million. PWS funding for the whole of 2014 is $789,000.

I will never forget being told that for every $100 we raise for PWS research, we are 1 hour closer to a cure. $62.5 million translates to 70 years closer to a cure.
Are all these people donating just because it’s the cool thing to do? I don’t understand the trend for viral activities. I think it’s great people are acting, I just wish the payout were spread out so that all rare diseases stood to benefit.

It makes me sad that I don’t have a “cool” idea that everyone wants to spread around, to help me  fix the stupid syndrome that rules our household. And, I
 wish more people would give so generously without a showy gimmick like the bucket challenge.



Wednesday, June 4, 2014

A little DIY, and a little outsourcing!

I have this problem: I start projects, and life happens, and I lose focus and stop before they're finished. It doesn't always happen, but when it does, it really bothers me!!

Take for example, the chaise longue recovering project. I had every intention of finishing that thing off myself. But, I don't have the workspace, or the time, and well... poor chaise has been sitting in my garage for going on a year.
Poor chaise longue :(

 *sad face* I have also had to stare at an ugly covered chair, for going on as long as well.
Not a good look!
So, I am outsourcing!! I found a local girl, who does amazing upholstery work, and I'm just going for it! Dropping everything off in two weeks from now, and poof! the work will be done. *happy face!*

A project I will NOT quit, is my cabinet refinishing project. Ooh, boy, did I ever dive in the deep end. But, it's going to rock.
No going back now!
Already, it's awesome. Sand, wash, prime, paint, paint, paint...
Sparkly Knobs!
Did I mention I hate painting? Well, it's actually not that bad, since I am working in tiny sections at a time.

It's going to be so bright!
By the time June is over, my cabinets will be like new. In the fall, we're getting new counters, which have already been measured out. Why so long? Well, a)it's nice to be able to pay for things in cash, and b)we have a handy family member who is going to install the counters for us. Waiting is a win-win situation!

Also going to be ripping out the old tile, and replacing it with white subway tile.

Lots on the go, and thankfully cookies have slowed so I can actually focus :) Of course, I really should be planning that walk!!

Sunday, May 18, 2014

Everything changes as it grows...

Mint, cucumber, chocolate mint, chives, thai basil, roma tomatoes and rosemary!
Bleeding hearts, and one of the cool painted rocks from the previous homeowners.
Jason's favourite painted leaf plant
The location of our soon-to-be-built fairy garden

Azaleas in bloom
The bees love these little flowers
My ever-changing veggie bed
The purple cabbage is going to be massive
The blackberry bush survived transplant!!!
Planted Irish Moss to eventually fill in between the pavers
Blueberries and the beginning sprouts from my Pollinator seed blend
We will definitely have blueberries this year
He does all the work
Strawberry patch #1
Strawberry patch #2
Starting to plug up their tubes! Happy little bees :)
This bush smells AMAZING
We have flowers of practically every colour
Deep purple...
...even blue!
These little flowers are my favourite
Another popular bee hangout
Who knew that our boring ground cover would explode in bloom?!
And that's what May has brought to our garden.

Wednesday, May 14, 2014

Another surgery down. Another night in ICU before we go home. I am so thankful it is over.

Ellie got her adenoids out today, and new tubes. Surgery went really well, but it took about three hours for her to wake up. Three long hours, of brief moments of Ellie wailing and flailing and being miserable.
Then, she woke, and she was happy. Happy until she realized she was connected to an iv pole, and had been reunited with all her probes. She's sleeping, it's 6:30pm. Dinner was terrible, but she ate it without complaint.

Home tomorrow. Please, please don't let her catch watch the people around us in "isolation" have.

Monday, April 28, 2014

Ellie is three!!

Ellie and Elsa

 The past couple months have been so full of cookies,  I am overwhelmed at the support and response they have gotten! I really love decorating them, but I'm finally past Easter,  and ready for a break!
This was only half of the orders I did!!
 I have a couple orders every month in my calendar,  and plan to do a bunch of prep work in my downtime, like stocking up on royal icing transfers,  and making a rainbow of sanding sugar colours.
I am going to host a few beginners decorating classes,  which I am sure will be lots of fun! 
These were so fun to do
Adult Paint-a-Cookies
Engagement Cookies!
Looking a couple weeks ahead to Mother's Day, I am not taking custom orders. I am going to have some sets available,  all depending on how much time I have that week. I enjoy the decorating most when I have free reign over the designs.

In non-cookie news, my garden is thriving! 
It is so lovely, watching everything growing. I have thinned my beets, chard, carrots, and radishes.  In two weeks my radishes will be ready for harvest!! I have already been enjoying bowls of spinach and arugula.
So yummy.
  I have learned only to plant one seed per hole, because almost all of them sprout! I tested it out after being disappointed in having to choose between which beet colour I would leave in the ground.  Haha, the silly things that stress me out. Well, 15 of the 16 seeds I planted in my second sowing sprouted! No thinning,  no deciding.  It's all good!
Yesterday,  I planted the kombucha seeds from that awesome pumpkin I bought last year. Excited to see if they grow. I also planted some random squash seeds from the kids' great-grandpa! I only planted enough to grow three plants if they sprout. We can only eat so much squash!
At the beach with Daddy
Ellie had her third birthday! How did I miss that?? Ha, that's kind of a big update.  We didn't really have a birthday party, Easter and dh's birthday were on the weekend and we were partied out. We just had a little grandparents dinner, and that was that. Next year! 
Ellie's "cake"

On her actual birthday,  she had appointments with ENT and audiology. She is scheduled for surgery on May 14th. Tubes and adenoids.Here's hoping that the surgery goes well, and that her apnea is improved. I know it won't affect her central apnea, but maybe she's on her way to outgrowing that! 
She's so excited to be starting school in the fall, you wouldn't believe how much she enjoys just the drop in preschool!
That's about it for this update :)