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Hi.

We are just two regular parents who had something unexpected happen to us: we were surprised to have a child with Down syndrome, and ended up getting a Sensory Processing Diagnosis for our son a year later. Our journey has been wild, but wonderful. We want to share our story, and hear yours too!

Episode 10 - Lulu's Winter of Drama, Part 2

In this episode, we discuss:

The effect of Lulu’s seizure medication, and her subsequent hospitalization several weeks later. We also discuss why her experience with RSV didn’t follow the normal progression, and what it felt like to be in the hospital for 10 days. Finally, we wrap up with some thoughts on how that experience shaped our perception of Lulu, and what our realization was after it was over.

Some before/after photos of Lulu on steroids:

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About a month before her Infantile Spasms. Note how small her face is!

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A few weeks pre-seizure, rolling off her mat!

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A few weeks pre-seizure. This smile was typical for Lulu at that time.

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In the hospital with RSV, while still on steroids for Infantile Spasms. This blank look was typical for that period.

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A few weeks after getting out the hospital.

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After several months, she regained enough strength to lift her head again, but this was the closest we got to a smile until about June of 2016.



Thanks for listening!

Thanks for tuning in! If you have something you would like to share (like your favorite stories from 2018!), you can leave a comment below, send me an email, or find me on Instagram at @specialstorey.

Also, please rate and review the show on iTunes here! It really helps others find the show, and we’ll give you a shout out on the podcast! It’s our little way of saying thank you.





Episode 11 - What That Crazy Winter Taught Us as Parents

Episode 09 - Lulu's Very Dramatic First Winter, Part 1