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    A mother’s perspective: How our family measures progress since treatment

    You couldn’t picture a happier or more beautiful little boy than the one who came into our lives on January 4, 2019. Little did we know, this bundle of joy we named Slade was just starting a journey that was going to change our family’s life.

    About 2 weeks after Slade was born we started to notice that he appeared to be a bit floppy. Our pediatrician chalked it up to him being a calm baby and told us he’d eventually grow out of it. With my husband being a chiropractor and my background in early childhood development, we knew something was wrong–we could just feel it.


  • This topic has 0 replies, 1 voice, and was last updated 6 months, 1 week ago by Michael Morale.

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        Michael Morale
        Keymaster
        Monday, August 12, Through Sunday, August 18: 
        This week has been a crazy one, to say the least. A week ago, I was experiencing quite a bit of weakness in my right arm, and it persisted for some time. Luckily, my arm started to recover on Monday. My strength level then slowly improved throughout the week.
        I’m not sure why I experienced this weakness. I guess it’s something that those of us with SMA have to deal with from time to time. Aside from this, my caregivers are getting ready to go on vacation next week. I met with the lady who’s going to be their substitute, which went well. Plus. my work with BioNews Services is keeping me extremely busy.
         
        When I went for my workout with Emily on Tuesday, she had two physical therapy students with her. One of the students was hers, and the other was Laura’s. Laura will be returning next week from maternity leave.
        We did my core strengthening exercises, and the students got to do all of these exercises with me. It’s actually nice to work out with physical therapy students. I get to explain what SMA is, and why I’m taking physical therapy. They both seemed extremely comfortable with working with me. While Laura’s student will be working with her next week, Emily’s student will be working with me, and Emily will observe. 
         
        Emily’s next article for the SMA News Today HCP website will be published on Monday, August 26. After this article is published, I will provide a link in my journal entry. Her article for September will be about letting physical therapy students work with patients who have SMA.
         
        Something To Make You Laugh:
        Two weeks ago when I went to PT, I was having a really bad day. I was lethargic and fatigued. At the end of my workout, Emily said to me: You pooped? Well, Vikki and I didn’t hear the inflection of the question mark. We thought Emily said that I had actually pooped in my pants.
        Suffice it to say, after Emily realized what Vikki and I were laughing at, it took us all about five minutes to recover. The following Tuesday, I bought Emily a pooped emoticon pillow. I told her that every time that she looked at that poop pillow, she could think of me. (No matter how many times I say it out loud, it just doesn’t sound right.)
        I’ve updated the flash briefings that I do for BioNews Services. Click HERE to go to the flash briefings. Click HERE to view my pictures.
         
        I hope that all of you had a fantastic week. Do something for yourself this upcoming week that will make you a better person. God bless you and I’ll see you next week.
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