We are at the National Institute of Health for a research study with Gage and Quinn. It’s largely a self-service hotel with perks where sometimes organizations bring in loads of food for dinner and a free pantry is full of food for the taking. There are activities for the kids, wide open hallways for running around in, fast friends to chase and be chased, girl scout cookies (I hear 50 boxes were donated) at the entrance, and our family suffers a little bit in one room. It’s not even about the space either. But Gage and Quinn aren’t used to having us in the room, or playing wide open until bedtime. Gage just fell asleep at 10:20, which is almost 2 hours past his normal routine. You can imagine how charming he can be after a night of less sleep than usual.
We got in around 5:30p Sunday evening, ate a quick dinner provided by a church (complete with teddy bears for patients!) and got to bed around 10:00, where we promptly missed the 2:00am pull up change and woke up to soggy pads. Opps! We parents were rested though, and that was a nice change.
I registered us at the NIH/Hospital Sunday night (admissions is open 24 hours) which saved about an hour Monday morning. We had breakfast at the hospital this morning and started at about 8 with the docs/nurses. The schedule was largely kept on time. A couple of appointments were cancelled which left Gage done around 10:30am and Quinn around 1:00. We spent the afternoon in DC (NIH is in Bethesda) at the Spy Museum and then back here for play and dinner, kidlet shower/bath and bed. A quick load of laundry and meds and so there.
On the schedule today? The beginning of a 48 hour urine collection for both kids. Which is interesting when you try to get out and about.
Tuesday it looks like we finished up at noon. Includes a blood draw for all of us. Gage thinks that is fantastic. Wednesday and Thursday look to be HELL days of back to back appointments. Friday is left open in case any tests of consultations need to happen then. It’s our overflow day. It will be the day we hope to get to the Mall to see some of the monuments.
We are here with some 40 families that I see that include any and all types of childhood illnesses/conditions. There is one other family here for the study we are in and they are a little bit like us – a thought to be undocumented syndrome. Won’t go into details because of their privacy, but their child is quite the charmer that Gage and Quinn have enjoyed meeting.
This doctor who is in charge of this study has courted our family for quite some time. We were reluctant to be in the study early on because it was limited to ARPKD. When it opened up last year to include all cystic kidney diseases and variations we felt ready to contribute to the information. Because we have two kids, she’d been pleased that we decided to participate.
I need to write about how it feels to be here, but I haven’t quite wrapped my head around it yet. I will tell you that it doesn’t involve the testing or study, but more how we qualify.
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I take it only Mutant families qualify? LOL
As far as the sign, I can’t make out the two words after “consumption” on the bottom row.
Just think, when you get home your whole house, yard, cars, everything on your property will be a nice shade of yellowish-green!!!!!
You might want to bring back a shovel to clear a path to your front door
Hey, are there FUN ACTIVITIES for the kids at the hotel?
I just got back from DC yesterday, weirdly enough, and I desperately wanted to go to the Spy Museum, but thought it might be a little old for my five year-old. Did Gage and Quinn like it? We’re planning a trip back in September, since we’re so close, and it should be less busy.
Also, and this is really weird, her favorite museum was–seriously–the National Postal Museum. There was a great big truck that she could pretend to drive, and that just rocked her world. The museum is also literally across the street from Union Station, so it’s not as much walking for tired feet.