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Aimee

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@aimeeraeanne

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    Aimee replied to the topic Shoe preferences in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 7 months, 4 weeks ago

    No!!  I will look those up!  Thanks!

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    Aimee replied to the topic Shoe preferences in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 7 months, 4 weeks ago

    Those are great ideas!  I hadn’t thought about Crocs.  I have some comfy Skechers myself and had been wondering if they’d be comfortable for her.

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    Aimee started the topic Shoe preferences in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 7 months, 4 weeks ago

    Just wondering if anyone had suggestions for comfortable shoes for a tiny brittle feet. Callie is still in a toddler size 13 but even still in toddler sizes it’s hard to find shoes that are lightweight.  She usually prefers to just wear her AFOs, but I’d like for her to have at least one pair of regular shoes to throw on when needed.  I just got s…[Read more]

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    Aimee replied to the topic No Period…Period in the forum Adults ​With​ ​SMA 9 months ago

    I just talked to a friend that said she has a birth control implant in her arm and she hasn’t had a period in years! 🤷🏻‍♀️

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    Aimee changed their profile picture 9 months, 1 week ago

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    Aimee replied to the topic No Period…Period in the forum Adults ​With​ ​SMA 9 months, 1 week ago

    Can I hijack your thread and ask how to manage when you actually have a period?  I’ve been meaning to post about this!  My daughter with SMA is 11 and I think her period will be coming soon.  We’ve talked about it a lot, but I realized I’m completely unprepared for how to deal with bathroom trips, especially in public where we don’t have ac…[Read more]

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    Aimee replied to the topic The Dreaded Delta Variant in the forum Coronavirus (COVID-19) and SMA 10 months, 3 weeks ago

    As an SMA parent, I am feeling so discouraged too!  I was finally starting to feel better about things, especially seeing that kids seemed less likely to develop severe symptoms from covid.  Now the new variant is supposedly way worse on children? 😩 I did go ahead and put my non-SMA son in school this year.  Although it opens us up to exposure, I…[Read more]

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    Aimee replied to the topic Comfy clothes / vertigo in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 10 months, 3 weeks ago

    Thanks so much for the suggestions, Alyssa!

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    Aimee replied to the topic Comfy clothes / vertigo in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 10 months, 3 weeks ago

    That is a great suggestion!  She recently started using a silk pillowcase to help keep her hair from getting cray cray when she sleeps and asked if she could get a whole sheet set in that material.  I can’t stand the way it feels 😂 but it might be worth a try if it would help!  Thanks!

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    Aimee started the topic Comfy clothes / vertigo in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 10 months, 3 weeks ago

    My daughter Callie (11 years old, type 2) has recently been complaining about her clothes being uncomfortable when she’s trying to get to sleep.  She sleeps mainly on her side and is able to roll over independently, so she doesn’t have a night nurse to help with turning her or anything. She normally sleeps in a loose t-shirt and leggings. First…[Read more]

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    Aimee replied to the topic Would You Rather – Round 6 in the forum Would You Rather? 1 year, 1 month ago

    Oh this is good!  My mother in law always keeps her house so cold and I have to adjust the thermostat in the middle of the night so I can sleep!  But when she stays at my house I usually tell her to adjust as needed so that she can sleep!

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    Aimee replied to the topic Ghosted by the Wheelchair Guy in the forum SMA Assistive Technology/Equipment 1 year, 1 month ago

    One HUNDRED percent.  Our guys are sooo nice when we see them, but so hard to get in touch with and get anything done.  My daughter got a new chair in December and we’re still waiting on the correct seat cushion to come in.  Ghosted is a great word for it.  I hate calling the central office and usually try to text or call our guy directly, but sin…[Read more]

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    Aimee replied to the topic Going to a Chiropractor in the forum Adults ​With​ ​SMA 1 year, 5 months ago

    Hey!  I’m an SMA parent and I’ve wondered about taking my daughter to a chiropractor as well.  I haven’t so far because she has a lot of sensory issues and anxiety.  I would just say that if you decide to go, get some recommendations for a gentle chiropractor from people you know in your area.  They do adjustments on babies without having to…[Read more]

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    Aimee replied to the topic Spinal surgery recovery in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 1 year, 5 months ago

    Oh wow I just now saw these responses.  Thank you so much for the encouragement!

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    Aimee started the topic Spinal surgery recovery in the forum SMA​ ​Parents​ ​and​ ​Caregivers​ 1 year, 6 months ago

    Hey all!  We are 3 weeks post-op from my daughter Callie’s (10) spinal fusion.  It has been such a hard few weeks.  I’m trying to reassure Callie that the pain and struggle is temporary and that she will feel better soon, but at this point I’m having a hard time convincing myself of that as well.  She is a strong type 2 and this surgery has taken…[Read more]

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    Aimee replied to the topic Online Therapy in the forum SMA Assistive Technology/Equipment 2 years, 2 months ago

    Following… I’ve been wondering about the same thing!

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    Aimee replied to the topic To Schedule or Postpone Spinraza Amid Coronavirus Crisis in the forum Coronavirus (COVID-19) and SMA 2 years, 2 months ago

    I have felt the same way about my daughter’s treatment!  She was scheduled for last week and I kept wishing her doctor would just tell me exactly what to do.  She’s doing the SRK-015 trial and had that scheduled last week as well so we decided to go ahead with that one and postpone the Spinraza.  Like you said, it’s hard when we don’t know when it…[Read more]

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    Aimee became a registered member 2 years, 8 months ago

    • Profile picture of Kevin Schaefer
      Kevin Schaefer replied 2 years, 8 months ago

      Hey Aimee, welcome! I’m Kevin Schaefer, one of the forum moderators, and I have SMA Type 2. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!

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