clinic
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Cardiology appointment
Nearly a year after completing the Fontan, Namine’s doctor cut back her medication as a response to her healthy heart.
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One puff less
Namine had an appointment with her pulmonologist yesterday morning. It was just a routine visit, but even so, we came away with some fantastic news.
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Wheelchair appointment
A while ago, Jessica and Namine met with a wheelchair person. (Specialist? I don’t know the official title.) Reason being: Namine’s legs have begun to dangle over the seat.
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Frustrations
The good news, kids, is that the state has determined that Namine still qualifies to receive disability benefits. The bad news is that she still has not received her speech prior authorizations, and likely never will. This means that she can’t receive speech therapy.
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Today was a waste of time
Namine continues her current prescription to treat this mysterious abdominal pain. This can’t go on indefinitely, however; so Jessica took her in to see the urologist for more tests and, possibly, an answer as to why this has happened at all. It did not go well, and we know just as much now as we…
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Ignoring the observer effect
As you may or may not recall, Namine recently had a sleep study at the hospital last week. The techs stuck wires and glue in her hair and told her to go to sleep, with the hope that this would be a decent indication of how she sleeps at home. And I can’t help but…
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Dermatology appointment
It’s always a bit frustrating for us when we have to deal with doctors who feel they know Namine better than we do. Imagine how maddening it is, then, when we meet a doctor for the first time and she is convinced that we are doing everything wrong.
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Speaking a new way
On Thursday I took Namine to the speech pathologist at Children’s. He wanted to see and hear Namine speak with the prosthetic and without it. I had not put the prosthetic in because it makes Namine throw up. So we went without it, I still had it in my purse. Namine did her talking into…
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Celebrating a healthy heart
Six months after completing the Fontan, Namine’s heart is doing phenomenally well.
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Sick
I’ve lost count of how many times Namine has thrown up today. It was supposed to be a fairly normal appointment day, with Jessica taking her mom to get a blood draw, then one for herself and for Namine. How strange it must seem that that constitutes “normal” for us, but the day ended up…
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Cookie day 2013
Jessica and her sisters had been planning today for some time. Today was cookie day… or perhaps, as I think of it, Cookie Day. We estimate a number of greater than six hundred cookies were made in the course of six hours. That’s not bad for having a single oven.
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ENT and therapy
We took Namine in to see her ENT doctor today. She’s been complaining of her ear bothering her, so we feared the worst: an ear infection. Fortunately, that turned out to not be the case.