At the end of this last year in November we were fortunate enough to have an appointment with a biochemical disease doctor, Dr Galina Nesterova, who just so happens to have a lot of experience treating people with cystinosis. It was so amazing to finally be able to talk with an expert in the field… Continue reading The Year Ahead
With the New Year ringing in I had high hopes that this year would be our best year with cystinosis. We've been living with it now for just over 2 years, have had lots of time to research, ask questions, learn about what everyone else is doing and coming to terms with it ourselves.… Continue reading New Year, New Medicine
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
When it came to getting our insurance company to cover all of Elsie's medications it was pretty much a nightmare. And it seems to be that way for a lot of cystinosis families, due to the rareness of the disease and it's medications. After a couple months our insurance did finally cover all of… Continue reading Dealing With Insurance
This Mother's Day we wanted to do something really special for Elsie's grandmas because they have been two of the most amazingly supportive, understanding and loving women not only throughout Dave and I's lives but also through this period of transition as we adjust to life with cystinosis. Although a gift can never really honour… Continue reading Step Up
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?
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!