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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 0 replies, 1 voice, and was last updated 1 year, 7 months ago by Kevin Schaefer.

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      • #11906
        Kevin Schaefer

        Yesterday I went in for my first maintenance dose (so my fifth injection). Overall it went well, though it did take a little more time than the previous injections.

        The most time-consuming part was getting the needle in the right place. In this scenario, a millimeter makes all the difference. It took several tries for the doctors to get the little thing in just the right spot for the injection. During this, I pretty much just closed my eyes and daydreamed. It wasn’t super painful or anything, just annoying.

        Then by the time my neurologist put the medicine in it was over before I knew it. I rested in the hospital for about an hour, and was then let home. After eating a late lunch I just took it easy in bed the rest of the day. I also drank a lot of soda to reduce my chances of a spinal headache. Praise the Lord I have yet to deal with that nightmare.

        Overall I have no complaints. The injections have gone smooth so far, and even if the effects of the drug are small I’ll take them. Feel free to ask me questions about the process, the effects I’ve seen, etc.

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