Monthly Archives: June 2011

So I am laying in bed wondering where the day went, and I don’t want to wait another day to mention some people who are doing some amazing things for Stella (I am using my iPhone to post please excuse any typos). A very close friend of ours, Danielle who now lives in Calgary runs […]

So we are home and we are wiped out. We will post our thoughts on the conference in the coming days. Looking forward to connecting with all of the people we met. Don’t forget the Rebecca Run on July 9th. If you can’t come, head to the blog and click on the link to sponsor! […]

We had a great day today. In the morning we heard about all of the current research and science being done in the search of treatments or a cure for sma. The reality is that no matter how promising, the time it takes to do thorough drug testing and research means that Stella won’t see […]

Oh crap.

  Holy learning curve. Learning about clinical trials and drugs in the pipeline to create the first ever treatments for SMA.  

We are in information overload already but we are learning tons and already meeting specialists as well as families that have years of experience helping special little kids like ours and it is confirming that we are doing the right things with her and that there are lots of options for preventative care. Plus there […]

Just sitting at the airport in Toronto waiting to catch our plane to Orlando and wanted to take a moment to thank my sister, and Diane at Hip Hop Lollipop for throwing the Feathers for Stella event, and a big thanks to all those who came out to make it such a success. It is […]

Check in with us from Thursday through Sunday for updates from the conference. We are looking forward to meeting some families and absorbing as much info as we can. [sorry about the fuzzy photo :)]

Had an amazing fathers day! Stella and I hung out in the beautiful weather, then went shopping for a couple things for our trip to florida [I’ll post on that a bit later]. Stella was in fine form, lots of smiles and giggles for me all day….. but she turned into a monster last night!! […]

We spent the day at SickKids Pulmonary clinic today. It was great to meet another specialist for some perspective and info on Stella’s condition and SMA in general. Learned what to look out for in Stella’s breathing and discussed getting her into a sleep study to give us a benchmark moving forward. They also did […]