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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 6 replies, 2 voices, and was last updated 2 years, 4 months ago by DeAnn R.

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    • #12078
      DeAnn R
      Keymaster

      In the latest episode of  Dose of DeAnn: A Glimpse Into My Life With SMA, I talk about hiring personal care assistants (PCAs) and living independently. Though the policies for how many caregiving hours a person is allotted varies based on where you live, I talk about what the process has been like for me and how I divide up my PCA hours.

      To start off, I talk about what qualities I look for in a PCA and how the hiring process works. From there, I discuss what a typical day for me looks like and what hours I use PCAs for. I also talk a little bit about the good, the bad, and the ugly experiences I’ve had working with care assistants over the years.

      Finally, I wrap up this video with the latest edition of the Alexa vs. Roy challenge. This week’s challenge is to see who can turn on the lights in my house the best. I think both Roy and my Echo Show do a pretty good job, but I’ll let you be the judge. I also use this as an opportunity to share tips for using the Amazon Alexa technology for controlling household devices.

      Check out the SMA News Today YouTube channel, where you can find all episodes of Dose of DeAnn: A Glimpse into my Life with SMA. You can also connect with DeAnn directly, right here on the forums page.

      How do you stay independent? Which tips and tricks do you have of your own?

    • #12105
      Kevin Schaefer
      Keymaster

      Great video DeAnn! Currently I live at home with my parents and my caregiver works with me throughout the week. I’m trying to hire someone for Saturday mornings, but the agency I’m talking with doesn’t have enough people on staff at the moment. I really like this specific agency though, so I’m kind of just waiting until they hire more PCAs.

      Ultimately I do want to move out eventually, and seeing you make it work does encourage me. Thanks for sharing!

      • #12132
        DeAnn R
        Keymaster

        Thanks Kevin! It does seem like staffing shortages are a common problem.  For weekends I’ve found if I alternate weekends I find staff easier.  They’re more apt to take a job when they know it’s every other weekend instead of every weekend.

        • #12133
          Kevin Schaefer
          Keymaster

          Yeah Saturdays especially are hard to fill. It’s only one day a week my parents have to get me up and ready in the morning, so it’s not bad. But still I’d like to fill that spot.

          At one point I had three great caregivers, including the one I have now, and I had all days of the week covered. However, one of them left for the military and the other went to grad school in a different state. That’s the thing about it being such a temporary job.

        • #12144
          DeAnn R
          Keymaster

          It seems like the good ones always tend to move on to bigger and better things.  Although I’m happy for them I hate to see them leave.

        • #12148
          Kevin Schaefer
          Keymaster

          So true. Rarely do you meet someone who wants to remain a CNA until they retire, and are good at it. I’ve just been fortunate enough to have some great ones over the past few years.

    • #12270
      DeAnn R
      Keymaster

      So far the new PCA is working out well. Not only is she prompt for her shifts, she likes to keep busy so we get a lot done.  The main downfall is that she can only work until October.  Might need to start looking now as it seems to take some time to find good ones.  How do you all go about finding caregivers?

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