Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
Oh no, the day has come that she's officially walking! Since she's been able to roll and crawl we've known that the day she started walking was going to be trouble. Unless the mesmerizing t.v. is on she is constantly moving, dancing and getting into trouble and now we're really in for it. It's so… Continue reading Everybody Look Out… She’s Walking!
One of the things that has made a huge difference for Dave and I when it comes to coping with Elsie's diagnosis is the overwhelming support that we've received from our friends and family. After being told that Elsie had Cystinosis we were a little hesitant to talk to anyone about it. She wasn't yet… Continue reading Finding Support
This is all the medication that Elsie has been prescribed and now takes daily since being diagnosed with cystinosis. From left to right it's Cystagon, calcium, cysteamine eye drops, potassium and sodium. Seems like a lot for a little toddler to take doesn't it? I have to say though we have been really impressed with… Continue reading Welcome to the Rest of Your Medicated Life 🙂
Cystinosis? What the hell is cystinosis? Elsie was born a bright, beautiful and large baby girl (8lbs 11oz) who immediately made everyone that met her fall in love. As our first child, Dave and I were in for a sharp learning curve. You mean she needs help to fall asleep? But by 2 months we… Continue reading Finding Out About Cystinosis
Elsinosis: Living with Cystinosis 