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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 2 replies, 2 voices, and was last updated 1 month, 1 week ago by Alyssa Silva.

    • Author
      • #21124
        DeAnn R

        Let me start by saying I’m glad Spinraza injections are only every four months at this point.  As I said before, the actual injection for me is the easiest part of the process.  Scheduling has increasingly become a pain.

        When the call came in to schedule my next injection I was surprised when she said the word December.  I was expecting the end of November, but okay.  Then she said December 5th.  My neurology appointment and physical therapy assessment were already scheduled for December 4th.  Heaven forbid I could schedule it all the same day like I used to.  Briefly I considered an overnight hotel stay because the time she gave me was arrival 8 am for a 9 am injection.  With a 2 hour drive and the fact I have to schedule transportation I couldn’t see making 2 trips with departure on the second day being before 6 am.  For an overnight I need my shower chair and Hoyer, and I’m not getting those in the Care Cab.  Sigh.  My next option, December 12th at 2 pm.  Guess I have to take it despite driving home in rush hour.   December 5th is also the anniversary of my father’s death, so that would’ve stressed my Mom out anyway.

        Now that those appointments are confirmed, I have to call to schedule labs and then call the bus company to schedule the rides.  Fingers crossed the stars align and everything works out.  Then I have to pray there’s no blizzards to interfere.

        I know it could be worse, and it probably is for some of you.  There’s just so many things to consider when scheduling it can be overwhelming.  What is your scheduling process like?  Do you have a FAM?  Do they help with the process at all?

      • #21178
        DeAnn R

        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.

      • #21181
        Alyssa Silva

        Ugh, fingers crossed everything works out for you! Minus transportation, I’m in a similar boat. I get my injections in the OR as a precaution and surgery only calls the day before to give me a time. More often than not, it’s scheduled for 7:30am which means I have to get up at 4am just to sit in two hours of traffic. I do have a FAM but she usually checks in after the fact.

        The entire day is both physically and mentally exhausting, but even so, I’m grateful to have this opportunity.

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