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our cranio story

Lucky To Live in Orlando: Our Craniosynostosis Story

I have never been happier to be an Orlando resident than when my sweet two-week-old baby was diagnosed with sagittal craniosynostosis.  It was a normal day for our new family of four, which of course means we were running late for my newborn’s checkup at the pediatrician’s office. These visits were mostly formalities in my […]

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How-Disney-World-won-me-over-for-our-family-getaways

How Disney World won me over for our family getaways

I love to travel. I’ve been to 22 countries, and relish the adventure of exploring new places. My idea of a personal dream vacation includes large mountains, lots of walking, a good stash of books to read and cozy coffee shops for relaxing.        But right now, we have three small children. Two of […]

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International-Angelman-Day

Loving someone rare

What is Angelman Syndrome? Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births. Angelman syndrome is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman syndrome […]

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The-best-gift-I-never-wanted

The best gift I never wanted

Two years ago this month, we received a call that changed our lives. After months of failed milestones and a barrage of testing, our fears and worry over our baby girl’s health received a name: Angelman Syndrome. Learning your child’s future is far from what you hoped is really hard. We cried, and we grieved. […]

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im-that-mom-posting-ponies-and-rainbows-on-social-media-but-this-is-whats-really-going-on2

I’m that mom posting ponies and rainbows on social media, but what was ACTUALLY happening?

  A couple weeks ago, I was that mom. The one filling your news feed with cute kid pictures, celebration (ala the world series), and general happiness…while actually having the worst week EVER. Now that the election is over, I think a lot of us are WISHING for more ponies and rainbows on Facebook. Today one of my […]

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When-I...Just.-Can't.-Even.-Anymore2

When I…Just. Can’t. Even. Anymore.

Let me clarify…I have a toddler. I could literally end this post now, because if you have a toddler, or have been through this weird twilight zone then you know what I’m talking about. Our daughter is three, and right in the thick of testing every single boundary possible. From wanting to sit on the potty, […]

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