Early Years

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

Early Years, Lifestyle, Medication / Medical Aides

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