This blog is our my way of keeping up with friends and family since the birth of our daughter on 30 March 2009.  As first time parents, we are really being put through our paces as Julia was born with a rare metabolic disorder called Smith Lemli Optiz (SLO) syndrome.  She has feeding issues & developmental delays - but more importantly, she is the most tender, beautiful, darling little girl - Mommy & daddy love her to bits!    Read on for an insight into our corner of the world. 

our journey so far....

little Julia was born by c-section 30.03.09.  For the first 6 months of her life, we were in and out of doctor's offices trying to figure out why she couldn’t suck and was developmentally delayed.  Julia is fed through a little tube into her tummy now and was finally diagnosed as having a very rare metabolic disorder called Smith-Lemli-Opitz Syndrome  - click here for more information. 

The really good news is that SLO babies can be treated by giving them cholesterol supplements and other treatments as they get older - we have been so excited to see her progress over the last few months!