speech
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Communicating pain
Since being decannulated, and especially since her stoma was closed, Namine has a much easier time talking. We’re continuing to teach her signing as well, and she’s improving every day. Of course she still signs quite a bit, which helps when we don’t understand her words. She’s still working on those consonants, but we hear…
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Sitting up by herself
I had the opportunity to see Namine sit herself up all by herself last night.
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A trip to the pumpkin farm
While everybody else sat at home watching some boring game, we took Namine to a pumpkin farm. She got to pick out her own little pumpkins, we took a hay ride, got lost in a corn maze, and picked out some large pumpkins, too. I think it’s safe to say that we had more fun…
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From vacation to decannulation
It’s always hard to get back into the swing of the daily routine after a vacation, even a small one like a 3-day weekend. (Of course, the nature of Namine’s condition and medication needs still require a semblance of routine, even on vacation. But it was still nice to relax and to be able to…
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Namine’s trach/vent clinic visit
Today is the last day that Namine has to wear arm restraints! Yay! Nothing really much to report from Namine’s trach/vent clinic visit. Last time, they found that she had an infection in her right ear. That’s gone now. We should find out soon if we can get her decannulated this summer. Speaking of, we…
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Waw waw
I set Namine down in the kitchen so I could draw all her meds this morning, by a bunch of her toys and books. Then I went into the living room to set up her breathing treatments. She followed me there a little while later scooting along on her bottom, all the while clutching one…
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Namine: 2, Allergies: 1
Today Namine had an appointment at Children’s Hospital with the allergy people. (I don’t really know what the department is really called. I doubt they call themselves “allergy people.”) Last time, we found out that she was allergic to cheese (but we’ve stayed away from all dairy, just to be safe) and rice. Today, they…
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Poopiness
Well I don’t know where to begin. Namine started with just more secretions and a slight fever at the beginning of the which grew to no fever, but vomiting and diarrhea like crazy. She has had probably about 7 blowouts since Friday. We have talked with her pulmanologist and the regular pediatrician and now the…
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Holy crap, an update
Yes, kids, it’s been a while since our last update. I blame hospital visits for that one.
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Finally:)
Sorry everyone for not posting more often. It has been quite a hectic past couple of months. Namine has been home since March and doing great. We spent two days in the hospital for heart monitoring and they called it equipmentitis. She has been stating in the low 90’s to even 100% O2 stats at…
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Hospital
Hello Everyone, I just wanted to quickly update everyone. We had to bring Namine in on Sunday to the Hospital. She was having crazy heart rates. They still don’t know what was causing it and they sent us home today. If I get a video of her laughing and talking then I will have Paul…
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YAY for equipment changes.
Man oh man. If everyone were trained to make changes that would be exciting for us. We had a couple of doctors visits this past week and they made some vent changes. The first changes I could do myself, but the other changes neither Paul or myself could change so we have to wait for…