DeAnn R

Sorry to hear you’ve been under the weather. Hope you feel better soon. If I get sick it’s usually around Christmas, so maybe it’s a good thing you’re getting it over with before the holidays.

It’s kind of funny, even though I like to plan ahead I don’t make lists and I’m not a calendar person. Probably contradictory, but so far it works ok.…[Read more]

Glad to hear you’re feeling better.

I don’t really have the option of having mandatory days off for illness. They know that if they’re sick or not feeling well I’d prefer them not to come though. Unfortunately I think some take advantage of that. Then I have ones that come sniffling and sneezing that swear they’re “fine.” As far as make up time my general rule is that if they…[Read more]

I think these scenarios run through our minds a lot. One time I had a PCA leave in the middle of her overnight shift. I didn’t know where she went or if she was coming back. Turns out she just ran to the gas station down the road to grab a snack. I informed her that was unacceptable. Honestly though, I’ve never had much anxiety about it.…[Read more]

I can’t imagine being homeschooled actually. Awesome that it worked out for you. I know a lot of people who do it, and not even for SMA reasons. My parents were more apt to keep me home if there was inclement weather as they knew recess would probably be indoors and be a cesspool of germs.

I’ve always loved the idea of journaling but find it difficult to do. In my mind I think journals should be written by hand in a book you tuck under your pillow. None of which I can manage myself. For some reason it seems less personal if I have to have someone go get it for me. Kind of the same with a computer screen, not very personal.…[Read more]

Finally got all the appointments lined up and go to call the transportation company and they won’t schedule further than a month in advance.  So I’ll be calling next week. Ugh.

Welcome!  I look forward to working with you.

Don’t be a stranger!  We enjoy getting your unique perspective on things.  Best of luck with your future endeavors.

I think I read somewhere you could do it with a feeding tube, but of course I can’t find where I read it.

I’ve been checking out the seasons from my local library. They have 6 seasons. Are there more than that? I haven’t googled it yet. It’s a little slow paced for me, but the science aspect keeps me watching. That and some of the quirky characters along the time period being fun to see.

Definitely interesting to consider genetic history. The…[Read more]

Yes, it’s nice when you know people who will stick with you through thick & thin. This kind of made me think though of some of my hospital stays. Sometimes the only time I see some people is when they visit me in the hospital. On one hand it’s nice they’re concerned, but on the other why bother visiting me there when they can’t visit me at my home.

To be honest I’m not sure if there are studies looking at a Spinraza/Risdiplam combination. I’m doubtful though because from my understanding the two drugs have a similar function even though they do it differently. I have heard of a combo of Spinraza/Zolgensma but since Zolgensma is only approved for infants I haven’t been following results.…[Read more]