Early Years, Lifestyle, Medication / Medical Aides

The Year Ahead

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

Early Years, Medication / Medical Aides

New Year, New Medicine

  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

Early Years, Fun Stuff, Medication / Medical Aides

Step Up

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

Early Years, Medication / Medical Aides

The Importance of a Second Opinion

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

Early Years, Fun Stuff, Medication / Medical Aides

Everybody Look Out… She’s Walking!

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!