That’s great! Thanks for the YouTube recommendation!

That’s so good to hear! Thanks for sharing! Disney World really impressed me with how well trained their staff was on accessibility.

Hi! My family is talking about the possibility of going on a cruise, and I wondered if anyone has experience with them and could give me an idea about how accessibility is! I know the ships have to be ADA compliant, but that doesn’t necessarily mean comfortable or without its challenges. If anyone could point me to any kind of disabled travel…

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Hello! My 15 year old daughter (Callie, SMA 2) has been using a stander basically since her diagnosis. It’s never been fun for her but since she’s been a teen it’s been harder and harder. She transitioned from homeschool to public school this past year, so the school day took all her energy and we didn’t even try to get her in her…

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My daughter was in the first phase of the trial! She was also doing Spinraza and then switched to Evrysdi. We didn’t notice any major differences with the trial medicine and eventually dropped out because she had such a hard time getting IVs put in. However, we did notice a huge increase in tiredness/fatigue when she quit. That timing did…

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Hi! I’m a mom of a 13-year-old with SMA. Our family just got back from Disney so I thought I’d share my 2 cents! When we got there my mother in law was concerned that we hadn’t requested the DAS pass and made a few comments about it. So throughout the trip I wondered if I should have looked into it more. (My daughter also has autism so she…

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My daughter is 13 and weighs probably around 60 lbs. I posted on here a few months ago asking advice about period management. Since then she decided that she wanted to try the pill and she’s on Seasonale. She’s about a month in and doing ok. She’s a little queasy in the mornings and we’re not sure if the pill is what’s causing it. Hope…

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Just read the column! You put my thoughts into words perfectly! Interesting point about the movie adaptation, I hadn’t thought about it. Hopefully whoever is making it will be forward-thinking enough to portray Nesta Rose differently!

Hey everyone! I took my daughter to see Wicked tonight. It was my second time seeing it and I remember feeling sad with the disability portrayal when I saw it before. This time I was even more aware and uncomfortable since I had my daughter with me. It is cringey to the point where I’m almost surprised they haven’t changed it because……

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Thanks for the responses so far! She has MDA camp in a few weeks and is scheduled to be on her period then. I’m scrambling wondering if there’s any way we can put it off… I was actually going to try the Seasonale for a month or two but when I went to pick it up the pharmacy was out of stock, and now it’s too late in her cycle to start. Her…

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Thanks so much for your input! Hearing other individuals’ experiences with this is really helpful. I’m not opposed to birth control on any moral grounds and it doesn’t bother me that it’s contraceptive. I’ve taken it most of my life (started when I was young because of awful period cramps) and haven’t had many negative side effects. I have…

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Thank you for sharing your experience! I actually think it’s really cool that she’s starting to be old enough to make decisions like that. It takes a lot of pressure off me as a mom when I can just ask her things like “do you feel like wearing your AFOs?” Or “Do you need some ibuprofen?”. Making decisions is not my strong suit,…

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She has some that she uses on lighter days (still with a pad or pantiliners). Thank you for the recommendation!

I can’t believe I’m just now asking for advice on this now that we’re several months into the game, but how do y’all handle menstrual cycles? My daughter’s pediatrician suggested the Seasonale birth control pill so that she’ll only have a few a year, but I don’t really want to start that right now (she’s only 12). So far what seems to work…

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No!!  I will look those up!  Thanks!

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.

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… Read more

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… 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,… 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!

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.… Read more

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… 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… Read more

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

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… Read more

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… Read more