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The importance of newborn screening for SMA

Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.


This topic has 0 replies, 1 voice, and was last updated 1 year, 11 months ago by Kevin Schaefer.

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    • #14432
      Kevin Schaefer
      Keymaster

      I posted yesterday about how my pulmonary levels have been strong lately, and part of this is due to me using the vest and cough assist regularly. I just wanted to share a quick tip for using the vest.

      Of the two devices, the vest is the more time-consuming. It’s not particularly difficult to use, but each session is 20 minutes. I used to neglect it because I just had trouble finding time in the day to do a vest session. Recently though, I started putting my vest machine in my bathroom and doing vest sessions while I’m on the toilet. It may seem weird, but I have to say it saves me a lot of time. Going to the bathroom at night or in the morning is already a time-consuming process, so I may as well knock out a vest session while I’m there. Plus, if I need to cough up while I’m on the vest, it’s easier to do so in the bathroom than it is in my room with my caregiver holding a spit cup.

      I also like to take care of all my medical and hygiene needs in one place. Getting all of that stuff taken care of in the bathroom is nice. Then in my Bat-Cave (which is what I call my room/home office), I am free to work, read, relax, watch movies, etc.

      I just wanted to share this little tip with you all. Hope everyone has a great weekend.

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