Original Comments
14 comments:
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Marcus said...
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Interesting. Elles did spit up a lot, didn't she? I wonder if that's why.
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May 17, 2011 3:35 PM
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Emily said...
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I'm pretty stumped with "who is marcus today?" I'm going to guess
Haley, but it could be Amy. Whoever you are (even if you are indeed
Marcus)- yes, Elle used to puke A LOT. But it never seemed to hurt her,
in fact she seemed to barely notice. She lost at least half of her
meals for the first 6 months. Things got quite a bit better after 6
months, but she still spits up a fair amount. Rarely is it whole meals
now, but especially if it's just milk in her belly, she gives a little
back a few times a week.
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May 17, 2011 4:20 PM
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B said...
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Wow, that was really interesting. That's why she had the nice small head
too. I'd like to see what an older person with Angelman's looks like.
Sweet little thing, I love that she gets to be so happy. That makes the
rest of the diagnosis better.
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May 17, 2011 6:49 PM
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Cat said...
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I think Marcus=Haley today. And that was way interesting to watch. I love and miss Mystery Diagnois so much. Great show.
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May 17, 2011 7:08 PM
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Emily said...
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The head thing wasn't a concern to me until the last 6 months. Scout's
head size at 6 months was in the 10th percentile, so I wasn't shocked
that Elle's was low too. Primary Children's clocked her head at 44 cm,
which puts her below the 2nd percentile. It is growing every time it's
measured though. and was deemed "not disproportionate or strikingly so"
She was diagnosed with "some" brachycephaly, which is basically a flat
back of the head. It is nothing I have ever noticed, but the geneticist
must have thought so. (brachycephaly is a symptom of Angelman's).
Other then the head stuff I mentioned, and generalized hypotonia (low
muscle tone), she was not found to have any of the other physical
characteristics that can be present with angelman people. I watched a
little video from Denmark (which has a higher population of Angelman
patients) and it showed some adults and the man had what I would call
"coarse features" which is one of the things that can be present.
Another thing would be an especially wide mouth, I saw a pic of a little
girl in Australia that had a very wide mouth, like enough space for an
extra tooth in between all her teeth. Also the eyes don't always match
up. These are just all possible physical characteristics. I have no
idea if Elle will develop any of these things as she gets older or not.
And totally B- the happiness makes the diagnosis way better. Mom's just want their kids to be happy. I have an easy job there.
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May 17, 2011 8:20 PM
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Emily said...
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Oh, and just that way that baby moves totally reminds me of Elles.
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May 17, 2011 9:23 PM
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Amy said...
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I thought her movements looked so much like Elles, too. I enjoyed
watching these clips. Really interesting. Marcus did = Haley
yesterday. Marcus sure does like to butt in on these blogs a lot
lately.
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May 18, 2011 8:43 AM
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Haley said...
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Yep it was me. :) I just didn't feel like correcting myself after it posted as him. Annoying!
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May 18, 2011 8:56 AM
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Long Island Girl said...
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Interesting vids Em. I'm glad the happiness is there - Elinor is such a
cute little smiler! And I'm glad she hasn't had the eating problems
this baby had.
Ami
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May 19, 2011 7:55 AM
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Emily said...
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I had a dream last night that Elle all of a sudden spoke a sentence. Her little voice was so cute.
I'm super glad Elle hasn't had eating trouble too. A nice thing I haven't had to stress about. All of this baby's symptoms are a little more severe then Elinors, including the smiling. Elle is a happy kid, but it isn't constant- a feeling of contentment is however.
By the way, I added an apostrophe after "mom" in one of my last comments that shouldn't be there. It's bugging me.
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May 19, 2011 9:23 AM
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Sue said...
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I'm at work, so I cannot watch the videos, I'll watch them when I get home.
But I do have two words for Marcus: LOG OUT!
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May 19, 2011 10:43 AM
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Haley said...
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Haha it's not always his fault. I check his email sometimes and
sometimes I don't log out. Haha poor Marcus, he has no idea we are
talking about him. :)
Oh and I had a dream the other night and it was just a short snippet that I remember of Elles being about 3 years old. She ran into my arms and gave me a big hug and said, " I love you!" It was the cutest thing. Those two things, walking and talking, might be a struggle for her but I think she will. The dream gave me hope, it felt so real. Thought you would like to know that.
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May 19, 2011 7:21 PM
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megandjon said...
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This is really interesting, to help us know a little more about the
syndrome. Is it for sure yet, the diagnosis? It's awesome that the
therapy can help so much. I'm going to put another word in for the Baby
Signing Time Dvd's. Although it sounds like Elinor has a milder case
than the little baby in the video, it looks like any help she can get
with communicating would be good. Those Dvd's are so fun and work really
well for all babies, with lots of different "problems" (even the
problem of being a brat and needing to learn to communicate, lol!)
Anyway, I'm really glad, also, that this has been a little easier for you than the woman in the video. That Elinor's case hasn't been so bad. She really has an awesome spirit about her and I think we are all really glad we know her. Also, we need to hang out again sometime!
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May 23, 2011 11:01 AM
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Anil Rajanala said...
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Wow that was odd. I just wrote an very long comment but after I clicked
submit my comment didn’t appear. Grrrr… well I’m not writing all that
over again. Anyways, just wanted to say wonderful blog!
Website hostings
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June 9, 2011 10:28 PM
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