Day by Day
TimeNicoleTomorrow will be 6 months without Arrowen. Time is this thing that we measure so much by. Yet time cannot measure love, truth, timelessness. My time with Arrowen was so timeless, so immeasurable...
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Longer away than with usNicoleFriday was 3 months since you died. It seems like an eternity. When I think about the time you were with us, it seems like a blink of an eye. Time has little logic...
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Merry Christmas, AngelNicoleJust thinking about what would be Arrowen's first Christmas. I hope she is getting showered with gifts where ever she is.Jingle tickles to you. ...
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MIssing my little girlNicoleI was just looking at the Trisomy18.org website and reading about the struggles and joys that parents have with their Trisomy babies. I remember writing to get support, answers, help. Now I read about new parents going through the same types of things Gregor and I went through while she was alive...
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Arrowen's CeremonyNicoleArrowen's ceremony was last Saturday. Gregor and I went to the temple to give alms to the monks in the morning. We made a vegetable stir fry for the monks, along with some other food. They did some prayers and chanting...
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Funeral CeremonyGregorNicole and I have just returned from the Wat where her funeral service wil be held. A week from today, Saturday the 8th of November at 8pm (please arrive by 7:30) there will be a service at Wat Pasee on Ekkamai Soi 23. This would have been the date we would have been celebrating her having lived 3 months. The service will consist of monks chanting and then we will eulogize her after...
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Prettiest StarGregorThis song, Prettiest Star, by David Bowie is our song for her: I have gone very low tech with this to keep it off the RIAA radar. So Click Here To Play It will take a bit to start playing (once it has fully loaded)
Recently we had been listening to these songs, which are appropriate at this time.....
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Her Struggle Is OverGregorArrowen died in her sleep this morning, Thursday, October 30th, 2008, shortly before 6am. She had gone for her second cast on Tuesday and was miserable all day Tuesday. Her toes were getting swollen and she was obviously in a lot of pain, so we removed the cast Tuesday afternoon.After a long night for her, she seemed better on Wednesday, but by the evening she seemed fairly out of it...
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The StruggleGregorEvery day our little fighter, Arrowen, struggles on. She has been dealing with what could best be described as spastic fits. These consist of her entire body stiffening, muscles become incredibly tight, her nose and throat get blocked with snot and thick ropey saliva, and she gets extremely annoyed/angry. The onset of these episodes seem varied...
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Almost 8 weeksNicoleWell, Arrowen is puttin' on the pounds, or at least lots of ounces. She is filling out nicely and has that baby cherubim look now. With getting lots of love and Gregor's special veg oil supplements, she is looking good.She spends more chunks of time awake...
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Stone Cold Chillin'GregorSuch is the life of Arrowen. Laze about waiting for the next feeding.Not a lot to report. That sums it up...
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1 Month OldGregorArrowen has hit the one month mark in fine style. There has not been much to report on since she has come home as everything is going along as normally as is possible. She's getting her feedings regularly and no longer gets royally pissed off from hunger as the next one approaches. Supplementing her feedings with about 1 ml of vegetable oil has really done the trick...
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Settling InGregorArrowen has been home now for four days and she is settling in just fine. She is awake a lot more than it seemed she was at the hospital. That is probably because she is now getting attention whenever she is awake. We are also seeing that she is definitely processing information, putting things together, and trying to work that to her advantage...
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First Day HomeGregorArrowen's first day at home has come and gone. All went smoothly except her scaring us witless at 3:00am this morning when she was apoplectic with rage over her empty stomach. Well, I guess that was the cause, as she calmed down once about 20 ml had made it down the tube. She really can work herself into a state: beet red all over, muscles tight, lungs belting out her displeasure...
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Free At Last! Free At Last!GregorThe day we have been waiting and waiting for has finally arrived: Arrowen came home with us about 15 minutes ago. She is now crashed out on the couch enjoying a bit of free-limb sleep. However, it was not as simple as we thought as before we could take her home we had to pass one final test. The test consisted of us not going mental waiting around to be escorted from the NICU...
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