First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.
The 2nd was with immediate family members where Kaelyn was a princess for the day.
Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids.
I think for them to wake up and breath everyday is a miracle for them.
The simplest task of swallowing water could choke them.
The suit of Darth Vader probably don’t help much.
There are ups and downs. The bad days life threatening, while the the ups are simply having fun days that puts a smile on K’s face (and without any choking or mucus pluggin episodes) and we treasure that.
The highlight of last year was of course the trip on the cruise. Kaelyn absolutely loved it. It sure took quite an effort on the logistics part.
We were also faced with literal life or death decisions yet again in the wards of the ICU, where we contemplated hard about Kaelyn’s life, death, quality of care and comfort.
We are thankful that we didn’t have to go through with our worst case scenario decisions.
Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.
We made it through another year. But we have to be realistic. But as much as we want to, for now, we cannot beat SMA.
In fact at any time, if a mucus plugs her airways or she aspirates her feeds, her life will be in danger if we are unable to clear it in time for her to breathe.
But for now, we celebrate the days. We try to lead an inclusive life with Kaelyn with the support of friends and family (even strangers for that matter) and face the challenges of a special kid.