Visiting Abigail

We were excited to visit Abigail's (Grace's real name is Abigail Grace) family this weekend! We went out to try and refresh them, but we feel like they encouraged us more!

Abigail continues to improve. She's able to open her eyes as well as move her feet, hands, and head. It looks like the doctors have adjusted her food formula so as to control her weight a bit more than before. She can also move her hands on and off of things. She has one toy with a blue plastic plate. If you put Abigail's hand on the plate, the toy will begin vibrating. If Abbey gets tired of the vibrating, she's fully capable of moving her hand somewhere else.

Abbey also has a good sense of what's going on around her. Like a lot of girls, she HATES getting ready in the morning. She frequently wears a sensor hooked up to a machine that in a way acts as her voice. The sensor detects Abbey's heart rate. If something stresses Abbey out, her heart rate will increase, and the sensor will cause the machine to make a series of tones as if to say "Leave me alone, already!" :-) Those tones are a frequent occurance in the morning as Abbey goes through the motions.

They're just about to begin weaning her off of valium, which should help her to become even more responsive!

We were also glad to spend some time with Abigail's mom, dad, and 2 brothers. They live in a modest home, and it's rooms overflow with love. There's a 5 foot wall with openings on both sides that lead from the living room into the kitchen. Abbey's brothers never grow weary of chasing dad and/or mom around that wall. Laughter and life abound in this house in such a way that I'm amazed that the roof can contain it all.

Having maintained this blog for over half a year now, we've had decent head-knowledge of what's been going on, but spending some time there first hand amazed us all the more. They'd never say this themselves, but Abigail's mom and dad are running the equivalent of a pretty involved non-profit organization. They lead a team of medical professionals, occasionally having to confront and correct those who aren't dedicated enough or hopeful enough for Grace's needs. They employ a team of neurologists, doctors and other medical professionals. They also lead daytime and nighttime, and weekend shifts of nurses. They often interact with government organizations, and are well versed in the relevant rules and regulations. They've also done such vast, in-depth interviews and research that from what I can tell, they're probably nearing the level of expertise that a degree would bring.

I've never met any parent, much less a parent of 3 kids who will claim that it's easy. Abigail's care is understandably more involved than that of a typical 3-year old. Granted, there's the occasional frustration of kids asking for boundries in the way that only kids can. Still, this family strikes me as extraordinary.

They never complained.

We stayed there for the better part of a weekend. I feel humbled to have been let in the door.