Elsinosis: Living with Cystinosis
A real life account of beautiful Elsie and how she lives with cystinosis
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?
Elsinosis: Living with Cystinosis 