Hello and welcome. My name is Kaitlyn Anne and I have Spinal Muscular Atrophy Type 1. Children born with SMA 1 gradually lose strength in their nervous systems and die, usually by the age of two. There is no known cure or long-term treatment. SMA not only affects the muscles that help me move, but it also affects those that allow me to breathe, swallow and clear my airway.
Tuesday, March 31, 2009
Back to Baseline
Everything's been pretty quiet around here. Kaitlyn is back to her normal baseline!! Still having slightly slower digestion, but nothing serious. The rest of the family is finally healthy again. I like when everything is "normal" around here. Now we just have to try and keep the kids healthy until the end of the cold and flu season, which should be soon!! Come on summer! We have had people enter our home and tell us at the end of their visit that they have had illness in their home!! Our own families don't enter our house when there is a sick family member living under their roof or if they know that they have been exposed to illness!! This is just an example of how people don't understand what it means for us when Kaitlyn gets sick. It disrupts our whole family dynamic!! Not to mention the fear, pain and suffering that poor Kaitlyn is put through everytime she gets sick. Especially when she has to endure a visit to the hospital. Don't get me wrong, our children's hospital is hands down a wonderful place and Kaitlyn would not be alive without them, but some visits are definitely easier than others.
We've been taking our normal walks down to the lobby in our apartment building to get the mail. It's a family event and one the kids enjoy, a lot of weeks it is their only outing outside of our apartment....no kidding! Some pics of the outing.
Kaitlyn waiting to go for our walk.
Getting ready to go out the door.
The door opens...Kaitlyn gets excited!
Silly boys all grins too!
New favourite thing to do...crawl through the table in the lobby!