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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 4 replies, 4 voices, and was last updated 7 months, 3 weeks ago by DeAnn R.

  • Author
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    • #22151
      DeAnn R
      Keymaster

      I just spent the last half hour trying to unplug my iPad. Something that takes most people 2 seconds. For goodness sake, I plugged it in myself, I should be able to unplug it. Besides I’ve done it before. I proceeded to wedge my nail between the device and the cord. Apparently my nails aren’t as strong as they used to be either because my nail broke. Next I grabbed a nail file figuring it would be strong enough to pop the cord out. Plus I have to file my broken nail anyway. Nope, the connection is too tight I couldn’t even work it in there. Probably for the best considering the file was metal, and I don’t need to get zapped. Did I get it unplugged? Continue reading to find out.

      For the most part I consider myself a determined person. If I set my mind to it, I usually accomplish it. Of course there are exceptions. When I know I can’t do something I don’t bother with it. For example I know I can’t lift the phone to my ear, so I automatically use speaker phone. I’d rather not waste my time. What I’m struggling with is deciding what the line is between determination and a waste of time. Is continuing to try to unplug my iPad a waste of time? How do you decide if something is worth the hassle?

      Currently my iPad is still plugged in. Although I feel slightly defeated, I decided I have better things to do with my time at the moment. That doesn’t mean I won’t try again. Who knows, maybe I’ll come up with an ingenious hack to get it unplugged before my PCA gets here? I’m open to ideas if you have any!

    • #22173
      Halsey Blocher
      Participant

      It can be really hard to decide where that line. In this case, I think I would say it’s worth the effort if you really need it, then it’s worth effort even if it doesn’t work. Otherwise probably not. I can’t really think of a good way to unplug it. I think I would have gone for the fingernail approach as well.

    • #22179
      Alyssa Silva
      Keymaster

      I often put way too much pressure on myself and I’d say it’s probably, in part, due to the fact that I don’t want SMA to have the upper hand in my life. In the case of the plug, I would’ve felt defeated too. It sounds silly because it’s just a plug, but it’s more than that to someone like us.

    • #22185
      Adnan Hafizovic
      Participant

      DeAnn, I use my teeth a lot in these situations, you generally have to find the right tactic, move the cable left to right. Of course when we can’t do something, it annoys us, very important thing for us is patience.

    • #22207
      DeAnn R
      Keymaster

      Adnan, I use my teeth to open stuff all the time!  Just don’t tell my dentist.

      My PCA ended up unplugging it for me.  Better luck next time.

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