DeAnn R

Thanks, I’ll probably dilute it with water for now and keep the Liquid Hope in the back of my mind. When you do the bolus with the syringe do you just dump it into the syringe, or do you suck it up and push it in with the plunger? New to this method, so clueless.

Thanks ladies!

Kelly, we have talked about RFB before, and I’ve kept that bug in my ear. I’m hopeful it will help with my digestive issues. I’m fairly certain it’s a combination of the formula and Evrysdi. Now that I’ve given the dietitian’s recommendations a shot it’s time to go rogue.

Yvette, I appreciate the recommendations. It’ll be…[Read more]

I have the 12 Mini. On one hand I love that everything is reachable, but I have to admit I miss the visual aspect of the bigger screen. More often than not I’ll save a project till I can have access to my laptop with the bigger screen. Shopping is a pain too. I want to see what i’m buying, lol. Maybe it’ll save money in the long run?

My body already sucks, so I’d like to keep my mental faculties please.

Thanks for the “political-free” (at least enough for me,) info. Do you know if there’s a timeline on the rollout? I just thought initially it was an individual organizations decision. Guess not anymore. There’s a clinic here requiring their employees be vaccinated and yes, employees have left because of it. At the moment there’s plenty of job…[Read more]

First of all, sounds like a fun outing. I also appreciate when parents foster acceptance by allowing their kids to ask questions. Typically I just say my muscles aren’t strong like theirs so I can’t walk. Then try to turn the focus on them. My last interaction involved a snake slithering under my wheelchair so needless to say my wheelchair…[Read more]

Pretty certain these medications won’t affect the number of SMN copies as they’re not gene therapies like Zolgensma (which replaces the SMN1 gene.) They can however increase the amount of protein being produced. Maybe that’s what you’re thinking? Both Spinraza and Evrysdi target the faulty SMN2 gene to correct the glitch so they can produce…[Read more]

A procedure to get rid of the ingrown part or get rid of the nail? I’ve struggled with this issue as well. Three times they’ve needed to cut out the ingrown part. It’s usually good for a long time but eventually grows back and causes problems for me. I’m currently having issues with one now. Haven’t heard of a more permanent solution, so I’m al…[Read more]

I recently gave up one of my side gigs as well. It was a tough decision but I felt I didn’t have the time to do it the way it needed to be done. Usually everything works out in the end. To be honest it’s been refreshing not having it on my plate. No one can do it all, so give yourself credit for the things you do get done, including taking…[Read more]

Thanks Lupa! Your comment about physical therapists reminded me of when so many people tried to get me to change how I gripped a pencil. In the end it was a waste of their time and effort. Yes, in the overall scheme of things we need to do what we think is best for us.

Thanks for letting me know about the missing link. It should be active now.