A Mother’s Musings

Emma’s Mom, Erin, contributed the following post on the eve of Emma’s 7th Spinraza dose.

Enjoy.

Bath time… a daily favorite!

Emma and I have had a fun week so far. We stopped by my old work at the Thompson Hotel in Downtown Seattle to say hello to the team. Emma amazed them all wheeling around the lobby in her wheelchair, all while snagging a sequined reindeer off their lobby Christmas tree. With Big Boss Amanda’s blessing, we were on our way to see the gingerbread houses at the Sheraton.

Auntie Isabel met us where we saw 6 foot gingerbread villages created by local chefs and architecture firms. Emma made a few attempts to break through the velvet rope to sneak a bite, but was pacified with her own cookie. Emma and I then got to surprise Daddy at work with some cheeseburgers and milkshakes. Everyone’s favorites!

Tuesday was another busy day with a stop at Chihuly Garden and Glass to have lunch with my former Director, Kathy Gerke. A few gifts from Kathy, including Wheedle on the Needle EARMUFFS kept Emma entertained, along with a tater tot every few minutes. She really loved seeing the Space Needle and wishing everyone she met a Merry Christmas.

Wednesday we had our weekly in home PT session with Nicole and worked on a secret holiday art project. Then Auntie JJ and baby Georgie, Emma’s most favorite baby, came for a visit.

Thursday night, with doctor’s approval, we are off to Enchant – a magical light and Christmas display at Safeco field (Editor’s note: Now known as T-Mobile Park).

Friday is the big day. Spinraza #7! As we get further away from her last injection we inevitably see an increase in muscle weakness. These last few weeks Emma has been struggling with her core and torso strength, really preferring to lay down and play instead of sitting, even with assistance. Her little body gets so tired quickly. This shot of muscle juice is just what she needs and she will continue to get them every 4 months indefinitely.

We are asked often if Spinraza is working and the answer is clear on our end: this little love would not be here without it. It is saving her life. It is working. The next question is usually delicately asking about her prognosis. The answer is always: we don’t really know, no one knows. Children who are diagnosed at birth and receiving Spinraza within the first week of life are thriving, they are like any typical child. Emma was diagnosed at 8 months, and that is honestly a little late in the game for a Type 1 child. But, Emma is STRONG and determined and so are we.

Every few weeks we hear of babies and children with SMA that have passed away – no matter how often it happens, it is always a staggering loss for our SMA community. It makes it harder that it seems to come out of nowhere – an aspiration, a quick virus, a respiratory failure. We grieve for these families. And the message they push forward is to not fear the end, to embrace the life you have now. And that is what we are doing. We are not letting fear steal our joy.