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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 15 replies, 6 voices, and was last updated 11 months, 4 weeks ago by Crystal.

  • Author
    Posts
    • #20718
      Crystal
      Participant

      I used to wear jeans a lot but stopped cuz they were hurting my waist even when they were very loose. So now I wear leggings. They’ve always been comfortable and I have soo many colors and patterns that I love. But now they’re starting to hurt the left side of my waist as well. I know its cuz my scoliosis is so bad – my old doctor warned me of this. My nurse tried to stretch the waistband a bit but that didn’t help. Now I don’t know what to do. Any advice? Thank you

    • #20719
      Kelly Miller
      Participant

      I don’t know, do you think maybe one size bigger would help?

    • #20721
      Crystal
      Participant

      I don’t think so… I mean, if I go any higher, they won’t stay up when people pick me up.

    • #20723
      Kelly Miller
      Participant

      Gosh, that is a bad problem to have. I love my leggings also, but I’ve always been able to find ones that didn’t hurt me. Mine have elastic that stretch a little if I need it to (on those “fat” days). I also don’t have that bad scoliosis since I had my fusion very long time ago without the rods.

    • #20727
      DeAnn R
      Keymaster

      I just tried jeans from IZadaptive. Pricey, but if you find a sale it might be worth a try. They’re made for sitting. Not for me, but skirts or dresses may be an option to give your waist a break.

    • #20737
      Crystal
      Participant

      Dresses are so not me lol. Although, I may talk to my nurse about it… Idk.

      Christmas is right around the corner. Maybe I’ll ask for those adaptive jeans. The country girl in me really misses wearing jeans.

      I think in the meantime I might try putting some rolled up tissue where it hurts. My mom’s been doing that for wear the strap from my BiPap mask marks my forehead and its been working for that. Maybe it’ll work for my side…

      Thank you!

    • #20739
      Halsey Blocher
      Participant

      If the tissues don’t work, maybe you could try a small piece of soft foam? Something small enough that it won’t be visible, but could provide a bit of cushion. Like DeAnn, I would recommend trying dresses. You might find some you really like. I would imagine there are probably some out there that fit into the country girl style that you like. And really good thing about them would be that they don’t technically have a waist, so it wouldn’t really be able to dig into your body like the waistbands of pants can.

    • #20746
      DeAnn R
      Keymaster

      May I ask if it hurts where your skin folds? You could try something called InterDry in place of a tissue https://www.amazon.com/Coloplast-InterDry-Textile-Antimicrobial-Complex/dp/B00O5V7LFW/ref=sr_1_6?keywords=interdry&qid=1569511602&sr=8-6 It might be more comfortable than a tissue. If you notice more irritation during the warm summer months it may not be just your pants causing issues. Here’s the product description “Antimicrobial Silver Complex Specially designed to manage moisture, odor and inflammation in skin folds and other skin-to-skin contact areas Knitted 100% polyester woven textile that provides a soft and lubricious, friction reducing surface to reduce the risk of skin tears A proprietary polyurethane coating to allow for moisture translocation by wicking moisture within the fabric An ionic silver impregnated into the cloth to provide continuous and effective odor control” Again a bit pricey, but I’m pretty sure it’s washable and reusable.

      • This reply was modified 12 months ago by DeAnn R.
    • #20758
      Crystal
      Participant

      Thank you. Its not cuz of skin on skin contact, though, cuz it only happens when I wear pants/shorts.

      Weird thing though: I love jeans for the country feel, but I’m actually into more of the rock-ish/punk style. I love rock in all forms including heavy metal. I have a board on Pinterest with styles I like. I’ll try to link it here: https://pin.it/4ucdcwarjvdcpf

      Most of the short dresses I would love with like a leather jacket of shorts. But to be honest, my style is way too expensive for me.

      Also, another reason I’m not fond of dresses is that we use my pants to position me in my chair. We can’t do that with dresses.

    • #20760
      Angel
      Participant

      I used to wear a waist cincher when I was in my wheelchair for long hours. Even after spinal rod fusion I still have a bit of a curve and it would help me without wearing down my stomach muscles. Honestly, it did not hurt the look of my figure either. Long story short (too late), on my side that still curved in the girdle would try to bend in and flip up. Luckily my mom was a huge fan of shoulder pads in the 80’s and not a fan of throwing anything away. So like someone mentioned previously (small piece of malleable foam), the foam shoulder pad really did the trick. OK, and trick #2, maternity panel pants. If you love bluejeans and leather pants and all the other tight things that make your butt and legs look great but are killer on the waist when sitting down for hours and hours, they really work! It may take a bit of pride swollowing to try the first pair on and you will also want to make sure your shirt is long enough in the front to cover up the material change. But in the long run if it works, nobody else has to know what makes our lives doable and fashionable. You can buy plenty of pretty cute ones already made or a local seamstress can usually alter any pair of pants with the panels. But I would not try your favorite pair of jeans first. That is what thrift stores, and goodwill are for – trying new fashion alterations on the cheap. I hope any of that helps!

    • #20778
      Crystal
      Participant

      Thank you Angel. I’ll definitely look into it. Maternal pants sound comfy. But they’re probably all for women and I still wear junior clothes cuz I am really small. Lol. But you all are giving me ideas. I’ll try some out and try to let you all know how they worked. Thank you!

    • #20779
      Tracy Odell
      Participant

      Maybe try jegging? They have “give” all over.

    • #20780
      Tracy Odell
      Participant

      Maybe try jeggings? They have “give” all over. See examples at http://www.torrid.com – sizes range from 10-28.

    • #20785
      Crystal
      Participant

      Maybe. I’ll check them out. Thank you

    • #20803
      Angel
      Participant

      It is a good thing to be small when someone has to pick you up! I do not know how Junior you mean by junior sizes, like preteen (3, 5, 7) or smaller like (10, 12, 14). But being on the petite side myself (5′ 90 lbs). I can still usually find my size in the adult stores (petite section). But they do sell the panels to make your own maternity pants. One great crafty mom I knew just took tube tops and made her own panels. I am sure the right seamstress could hook you up unless someone in your circle can sew. We are not very gifted in the home economics department in my family, more accountants, writers, and engineers. But the good thing about being an accountant is you usually know someone who does what you need. Remember, act like a Chihuahua and never let your size stop you from getting what you need! Sorry my posts are always long!

      • This reply was modified 11 months, 4 weeks ago by Angel.
    • #20822
      Crystal
      Participant

      Your posts are long?! Girl, you’re talking to the queen of long posts! Lol.

      If using folded toilet paper works, then I don’t see the point in trying to find new clothes tbh. There’s too many other things I want. Lol. But when Aunt Flow visits (like now) I wear diapers to act as my pads anyway and they are actually pretty comfy. But as soon as Aunt Flow leaves me alone, I’ll try the folded toilet paper.

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