The Tilly Prescription


The NIH ( is unlike any hospital we have ever visited – and we have visited some pretty stellar hospitals. Every single patient is participating in research of some sort. That means that instead of sitting in waiting rooms vialssurrounded by children with colds and armchair athletes with sprained ankles, you are personally escorted from appointment to appointment (we had 2 escorts with us all day!) – and each event happens precisely at the time for which it is scheduled. Imagine that!

Today was LONG! We had 7 hours of back-to-back-to-back appointments. Due to one of the doctors being ill, we got a little discombobulated and ended up not even having time to stop and eat. They thoughtfully brought us a snack pack. Amy ate hers in a hospital gown while 3 people examined her skin!

Visits inclIMG_0685uded health history and dermatology (4 hours), and lab work for all of us (yes, all 14 of those vials are Amy’s, and yes, she did watch the drawing). Amy also had a Dexa scan, which measures bone density.

One thing that was interesting was that at multiple points as we talked, the researchers would glance at each other and nod in a pregnant-pause, full-of-meaning, knowing-kind-of-way. I couldn’t decide if this was refreshing (as in someone finally understood exactly what we’ve been dealing with for all these years)…or if it was disconcerting (in a “what are they thinking?” kind of way). Maybe it was a little bit of both. And, we should find out just what they are thinking in 3 days’ time!

TitaniumAmy lived up to her nickname and was a rock star throughout.That said, between the time difference, travel, lack of sleep, sensory overload, and the sheer amount of information…we were an exhausted and bedraggled little family when wbeach party.jpge returned to the Children’s Inn (

One thing our girl was really looking forward to was meeting Tilly, the Inn’s therapy dog. And when we got to the Inn, we found her out for a romp on the basketball court. It was just what Amy needed after a long, stressful day. She got to play fetch and was able to get in some good snuggles. It was the perfect transition to mark the end of a long testing day and the beginning of unwinding and de-stressing.

Afterwards, there was a beach party at the Inn. We stayed for an hour or so, but TitaniumAmy faded fast so we headed back to the room where she immediately fell asleep–it was 6:30 p.m.!

Tomorrow we are back at it bright and early. Lots of clinic visits scheduled…and hopefully some more Tilly time, too!

2 thoughts on “The Tilly Prescription

  1. Reblogged this on Adventures in Advocacy and commented:
    Having a child with special needs is an adventure, having one with extraordinary medical needs makes for an extraordinary and complex adventure. Follow this fantastic and beautiful young lady in her journey of discovery. Way to go Titanium Amy!

    Liked by 1 person

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