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 Blood Oxygen and Lung X-Rays and everything was A-OK.
While we were there we bumped in to Tori Lacey, the young woman with SMA that received a signed guitar from Justin Bieber at a concert in Tampa Bay and recently auctioned it off to raise money for SMA research. She and her mother were gracious enough to say hello to us and Stella was as bright eyed as usual. We exchanged contacts and we look forward to talking with Tori’s mother about getting involved in local fundraising efforts.
Participate in the run, enjoy an amazing post run bbq and enjoy activities for kids.
There are lots of ways to participate. Sarah, Stella and I will be doing the 3k run/walk/roll and invite all those interested to join “Team Stella” at the event. Go here to register and make sure to join “Team Stella”. [Last year the event sold out so if you would like to join us register ASAP]
For those who are unable to join us, you can sponsor the team here. Every little bit helps, all proceeds go to help find a cure!
Together, we will find a cure for SMA. We look forward to seeing you at the start line!
We had a visit in house from CCAC today. They will be assisting us in finding services that might help with Stella. Not much is available to us because they have a gross income cut-off which we exceed. It is super frustrating because they don’t take cost of living or where you live into account.
After our visit with the case worker, we had a nice stroll around the neighbourhood. It was the first really “nice” day of the summer and we took advantage of time between appointments to get out and about.
Dr Sgro just took Stella’s weight and measurements today to chart her progress. She has plateaued a bit but he says that is normal so we are not so worried about that.
That was it for today. We are still waiting to get information and appointments from all of our [Stella’s] other Dr’s and case workers.
As we learn more about SMA and how it will affect Stella’s body, we have heard over and over from other families how beneficial they think an iPad is to their children. Because of the touch screen it doesn’t require much strength to operate. A whole new world is open to Stella who can now do puzzles, play an instrument, read books, and even play games including a virtual doll house!
There is a fantastic organization called The Gwendolyn Strong Foundation who is raising money for SMA families to provide iPads to those who cannot afford them due to the staggering financial costs of medical equipment/therapy. You can check out their campaign here http://thegsf.org/campaigns/detail/projectmariposa/