I've been meaning to do this post for awhile, but have been putting it off for various reasons. A month ago yesterday I posted about Baby H, the PF's adorable little muffin. He is now a month old, and still adorable, but his little life has changed drastically since that last post. Baby H has been diagnosed with Spinal Muscular Atrophy Type 1, which untreated can shorten his life to around 8 months. There is a new drug that was just approved in December of last year that he has been approved for, and this has a good chance of not only extending his life but improving its quality. He had his first treatment last week, tolerated it well, and even showed some improvement. SMA often affects babies' abilities to breathe and feed, so he was put onto a feeding tube right away, and yesterday had more treatments for breathing and they got more equipment to help him at home. He's such a little fighter, and his mama is the most fierce mama I know. His daddy, too, but I don't know him as well, and can only speak about the PF really. She told me the other day that she just does what she has to. I told her that's enough, and pretty much the definition of a hero in my book. She jumps in and does whatever it takes to advocate for her boys, and she is amazing. I know she's tired, and I can't imagine everything she is going through, but she amazes and inspired me on a daily basis.
I tried to figure out what kind of shoes to put with this post. It seems kind of frivolous to talk about shoes when a baby's health is on the line. But life continues, and Baby H, like all of us, needs happiness, even if it is in the form of shoes that might make us smile. In fact, Baby H gave me the inspiration for the shoes. In a picture the PF posted on Facebook the other day H had his "new wubnub pacifier moose" that he'd gotten in a recent care package. How often do you ever get to use the phrase wubnub pacifier moose? Clearly his shoes needed to be moose:
Plus, moose are strong and fierce, just like Baby H and the PF.
If you want to know more about their story, you can go here, the link goes to their GoFundMe page. Please read his story and support them however you can. That might be money, that might be prayer, that might just be learning more about SMA and how it affects families.
