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Archive for the ‘Boston’ Category

The last few days since my last post have been action-packed! Today, Keith and I went into Boston for my gastric emptying study, which is a precursor to the Antro-duodenal Motility test I’ll be having at the end of October. We confirmed what we already knew from endoscopy: my gastric emptying sucks. I arrived at 11am for the study, having fasted for about 10 hours. I was exhausted and just wanted to sleep – but more on the reason why below. I was sat down with 2 eggs scrambled with some yummy radioactivity goodness, a glass of water, and some toast. I warned the administrator I wasn’t very good with solid foods and then began choking them down. I asked if I could take some zofran after nearly losing the eggs on the floor, but was told “no.” I finished the eggs – barely – with 2 sips of water and no toast. I think the test ruined scrambled eggs for me permanently because I will forever associate them with a metallic taste.

I was then told that for the first hour I had to remain still on my back while a scanner took pictures every minute. If my stomach had cleared 50% of the food after 60 minutes, I could leave. I was told that 60 minutes is the average for a “normal” person. We laughed. He continued to say that after that I could sit up but we’d have to take more pictures every 30 minutes until I reached 50%. We were there 3 hours – usually, the test ends by 2 – and I still hadn’t reached 50%. Because the reading was exactly the same for the last 90 minutes, he said I could go as he didn’t see much happening soon after I kept steady at 44% emptied. I immediately took a zofran and drank some water as I couldn’t have anything for the last 3 hours. And that’s how I finished the 2nd of my 5 medical appointments this month.

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While tutoring last week, we took a trip to the Museum of Science. While there, we spent quite a bit of time in the Theater of Electricity. T seemed so enthusiastic about the technology that I joked she could be an engineer when she grew up.
“No. I want to be something else.”
“Well, what do you want to do when you grow up?”
“I want to cure mitochondrial disease.”

I do, too.

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The past few days have been action-packed for the Hertzog-Merrill household. As I had mentioned before, we spent Saturday at the first “Monthly Dose of Hope” with other mito families. This is incredibly important to us – and our emotional health – as we spend the entire afternoon celebrating life with people who truly understand our life. While our family and friends have been incredibly supportive and understanding, but it’s a different support from those that are living our life, dealing with the hospitals and doctors and the terminal nature of the disease. These families provide a form of support that no one else can replicate. At the party, we got to meet so many wonderful families and individuals and got to visit with some of our friends – including the newest addition to our “family,” Sophie! It was a peaceful day where we didn’t once have to explain anything, everyone just knew.

Saturday afternoon, however, totally wiped me out. In order to fully recover, I slept over 15 hours on Sunday. This isn’t too out of the blue for me, but it doesn’t happen everyday, either. Socializing takes work and energy for me; sleep is really the only way to replenish my energy. We ended up staying over at the Bush/Dalton house Sunday and Monday nights so we could watch the kids early the following mornings. It turns out that I’m only good for a few hours of babysitting when I’ve had a big weekend so I headed off to snooze each afternoon while Keith (aka “the most amazing husband in the world”) took up the post of #1 sitter. He rocks. Seriously. The kids got to swim, go to the park, play Wii, and get some homework done while I took my naps.

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