I love photos, especially family photos. I am probably one of those parents you see at the playground taking a million pictures of their kid with their phone and you think to yourself "why can't they just enjoy the moment?" But I can't help myself, to me Elsie is the most adorable thing on the… Continue reading Our Tiny Light
The Dark Moments
For the most part I try to keep this blog as positive as possible, because even though cystinosis is a scary, lifelong disease it can be mostly managed by medications and I know that Elsie can still live a long, beautiful and fulfilling life. But sometimes I worry that I'm not accurately portraying the seriousness… Continue reading The Dark Moments
Baby #2
Hello, I am baby number 2 and I do not have cystinosis!!!
Genetic Testing
I'm slowly learning that just about everything related to a rare disease is more complicated than it should be, certainly more complicated than it would be if Elsie had a more common disease. Mostly it's been the struggles we had with getting her medications and coverage approval from our insurance company that caused the most… Continue reading Genetic Testing
We’re Expecting!
Dave and I are super excited to say that we are expecting our second child in April 2015! After months of agonizing over trying to have another baby or not (see my One in Four post) our decision was simply made for us. I don't want to freak anybody out who is currently using this… Continue reading We’re Expecting!
Roller Skating with Rickets
Recently I finished reading the excellent book Roller Skating with Rickets by Jessica Jondle, a woman in her thirties living with cystinosis. It recounts her life with the disease, her struggles, many accomplishments and unwavering determination to not let cystinosis define who she is or what she can do. As soon as I heard about this book… Continue reading Roller Skating with Rickets
She’s 2!
My little girl is now 2 years old! I can't believe how fast time is going, it feels like only yesterday Dave and I found out we were pregnant. I still remember the fear I felt on our first car ride home from the hospital. Does everyone in this city drive like a lunatic? Don't… Continue reading She’s 2!
Up, Up and Away
It's been 2 months since we started Elsie on growth hormones and so far we are super happy about it! She's currently 78.9cm (2.58 feet) tall and weighs 8.9kg (19.62 pounds)and is now just below the 3rd percentile for both height and weight. It's so exciting to see her pant legs start to get a… Continue reading Up, Up and Away
Dealing With Insurance
When it came to getting our insurance company to cover all of Elsie's medications it was pretty much a nightmare. And it seems to be that way for a lot of cystinosis families, due to the rareness of the disease and it's medications. After a couple months our insurance did finally cover all of… Continue reading Dealing With Insurance
Step Up
This Mother's Day we wanted to do something really special for Elsie's grandmas because they have been two of the most amazingly supportive, understanding and loving women not only throughout Dave and I's lives but also through this period of transition as we adjust to life with cystinosis. Although a gift can never really honour… Continue reading Step Up
Elsinosis: Living with Cystinosis 