September already?


“Where did August go?” I ask myself as I sit here and stare at my schedule for September which makes me want to schedule naps that I won’t be able to take until October. I’m super excited about everything that is planned for September, but I honestly don’t know how I’m going to survive it.

Oh my dear sweet Lumizyme, I'm counting on you to keep me energized during all of this.

I have three infusions in September along with trying to squeeze in as many physical therapy sessions as possible. I also have a couple of Pompe awareness events scheduled.

One of my sorority sisters is visiting Walt Disney World for a week. The day she leaves I fly to Washington DC to visit my best friend. Together we will cheer on another friend who is participating in the DC Short Film Festival. A few days after I return from DC I will head to the airport again for my annual father daughter trip. So I’ll have lots to update you on – when I get a chance.

I was so bogged down with pain for so long, while at the same time visiting multiple doctors trying to find out what the heck was wrong with me, this will be the first time I have really had the opportunity to travel in a very long time. I’ve had to schedule my infusions carefully around departures because my Lumizyme treatment is not something I care to miss. I will have to stick to my diet which could be a challenge away from home, but I’ll pack protein bars to help keep me on track. My physical therapist has been designing an exercise program I can take with me so I don’t fall behind. As difficult as it will be, the most important part is that my medical needs will be taken care of because they always take top priority.

With all of this going on, I will do my best to keep you posted on everything!


  1. Oh my dear sweet Lumizyme…oh my darlin’ Clementine…sounds like something that Brad could add to his repetoire of songs for the karaoke gig doesn’t it? lol

    It’s so great you have so much to look forward to this month Monique. So exciting. And a father daughter trip, how cool is that!

    Have a fabulous month, i look forward to hearing about your adventures 🙂

    Allyson xo

    1. Thanks Allyson, it will be nice to have some adventures to post about that aren’t totally based in the Pompe world.


  2. Wow, busy girl! Proof that Pompe doesn’t define who you are. But, thank you Lumizyme for letting that girl get out and play! Oh I know, there’s the PT and the eating right, and all that stuff,,, but you know what I mean!

    Brad 😉

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