A real life account of beautiful Elsie and how she lives with cystinosis
I am not a gambler. Dave and I have a one in four chance that our children will have cystinosis and this fact has been weighing on me ever since Elsie's diagnosis. We've always planned on having two children but we've really been struggling with the idea of bringing another child into the world knowing… Continue reading One in Four
This video was played during the Night of a Thousands Star's celebration last Saturday night. It was the perfect way to end the weekend Day of Hope conference put on by the Cystinosis Research Foundation and our family is so happy that we were able to be a part of it. Right away when Elsie was diagnosed… Continue reading The CRF Day of Hope Conference
After the whole NG tube business I had written an email to our renal clinic nurse saying that we were sick of not being listened to and in the future we needed to be better informed about why these decisions were being made. After some back and forth between us we had sorted everything out.… Continue reading The Importance of a Second Opinion
Our family saga with the NG tube is at an end. It was only in for a week but it felt like years and I have to say it was the most trying thing we've been through during this whole cystinosis thing. The insertion of the tube went pretty much as we thought. They swaddled… Continue reading And the NG Tube is Out
That is the oh so difficult question. We had our monthly check up at the renal clinic on Monday and they want Elsie to have a nasogastric tube (NG tube) placed while we wait for a G tube. Unfortunately we're unable to see the surgeon until the beginning on February and even then she… Continue reading To NG or not to NG?
This is the Christmas e-card I sent out to all of our friends and relatives and I just had to share it on here because her face is priceless! Usually she loves everyone that gives her attention and can charm the pants off of almost anyone but for some reason she is not a fan… Continue reading Happy Holidays!
No we weren't trying to recreate the famous Tom Cruise pantless dance scene, I was actually trying to get a "clean catch" urine sample from Elsie. Which was indeed risky business. We were at the renal clinic on Monday and her recent urine test came back with a large amount of white blood cells in… Continue reading Risky Business
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 🙂
Elsinosis: Living with Cystinosis 