Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
So it's been awhile since I posted an update on Elsie and that's mainly because she's been doing really well! Her weight and height have been following the growth curve at about the 15th percentile which is awesome. And for the most part her levels have been really good with the exception of her potassium… Continue reading How Things Are Going
That beautiful girl in the poster is Abbi, a fun loving soon to be 9 year old living with cystinosis. April 13th is her birthday and to celebrate for the past few years her school has done Sunglass Day, where kids could wear their sunglasses to school in honour of Abbi for a small donation,… Continue reading Cystinosis Sunglass Day
This past week Elsie became a big sister to her little brother Linden. Linden came early and unexpectedly (born at 36 1/2 weeks) but he is doing well and we are all so in love with him. Above is a picture of Elsie meeting him for the first time. The way she is with… Continue reading Welcome Baby Linden
Almost every person with cystinosis also has Fanconi's Syndrome (early diagnosis helps!), which causes, among other things, excessive urination. There's a great diagram in Jessica Jondle's book Roller Skating with Rickets (originally appeared in the Parent's Guide to Cystinosis) that depicts the kidneys as big water jugs missing a valve, where the cystinosis jugs are constantly emptying no matter… Continue reading Preventative Bed Wetting Measures
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
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
Hello, I am baby number 2 and I do not have cystinosis!!!
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
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!
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!
Elsinosis: Living with Cystinosis 