Today we received our care package from FSMA (Families of SMA). They are so incredibly generous. There were toys that Logan can play with, a bath pillow to make bath time easier as his muscles weaken more, a bubble blower, a beautiful quilt made by the grandma of Nora (www.goodentree.com) who also has SMA. Several foundations were involved in donating. I told Brett one day when we are able, I would love to contribute to the care package somehow.
We also opened up a donation account (and working on linking it to this site). All funds donated will go towards Logan’s medical bills and related expenses. Every little bit helps right now. We are starting to look into sleep assisting/oxygen machines for him to use during the night so aside from the STL trip, that looks to be the next big purchase.
Today was by far the hardest day. We took Lucas to gym and Brett brought him home so I could leave early with Logan. Logan started throwing a fit in the car though. He really does not care for his car seat…never has. I’m afraid we are going to have to go with the car bed sooner than originally thought. I cried towards the end of the ride as well. You could hear his cry get weaker but there was nothing I could do to stop it. Once we got home and he was out of his seat, he was just fine. Smiled, chatted, and acted like he didn’t have a care in the world. I broke down sobbing because it was so hard driving home. This isn’t the first time he has thrown a fit. However, this is the first time since finding out about SMA and his weak muscles it has happened.
I still question why this is happening to us. Why our beautiful baby boy is the 1 in 6,000 this time to go through this journey. I suppose as we keep pushing forward more will be revealed to us.