Aimee

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! 🤷🏻‍♀️

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]

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]

Thanks so much for the suggestions, Alyssa!

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!

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!

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]

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]

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

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

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]