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Monthly Archives: April 2008
Spoken to the Mutant Family
I’d forgotten this until today, but the liver doc (who made us laugh) said something funny when referring to Gage’s current liver condition: “Actually, to me, this is pretty boring.” Which we readily agreed, we liked. You know, since it’s … Continue reading
Posted in Story telling
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Smooth
I just have to say that the NIH knows how to run a schedule. We spent most of the week in utter shock that every appointment for both kids was on time. I realize that the NIH isn’t a normal … Continue reading
Posted in Raising special needs kids
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Feeling normal except the stroller.
We had a good day Friday. We went sightseeing and the kids were mostly behaved. There was a time when Gage hit Quinnlin we were told, but we couldn’t get a straight answer from Quinn so chances are there was … Continue reading
Posted in Raising special needs kids
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Vision unmagnified.
I forgot to address the vision exam results for Gage (progressive eye disease) from our wrap up session. The (research) doctor assured me that the test showed a slight abnormal result. She said most of his test results were normal, … Continue reading
They're special. Magnified.
We had our wrap up session with the doctor. Discussions about the results, discussions on our mutant family, information specifically on MRI results with a fabulous liver doc (who made us laugh), and we received a stack of papers for … Continue reading
Mutant Genes Magnified.
Tuesday wasn’t a long day and it was a long day. Even short days at the NIH are long it seems as the information they are throwing at you is sometimes new, sometimes verification and sometimes it’s just the same … Continue reading
Crappy kidneys magnified.
click to enlarge to read a message from our Federal Government 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 … Continue reading
New.
We have moved our offices from our home and it is lovely space. It’s a bright, welcoming space that I know will be a good place to come everyday. It’s comfortable and because of that I think the trade off … Continue reading
Posted in Working through it.
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Good call.
About a month or more ago Gage had a not so good spell of behavior at school. It’s hard for me to remember what some of the notes and emails and discussions were about from his teacher but I can … Continue reading
