Tuesday, May 17, 2011

When you have a minute (or 13)

I came across this on youtube and I used to watch this show all the time (when we had Discovery Health) and this is one about a baby with Angelman's. It was so interesting to watch and I saw so many similarities to Elles. Although this little girl has had more trouble eating then Elles. Also Elle doesn't or didn't scream a lot. Once in a while she cries without any real symptom wrong, but never for long. I would guess this baby was crying because she had a harder time eating and was hungry or in pain. Anyway, you guys should watch it, it's very interesting. I didn't include the first clip cause it is labeled differently and is hard to find, plus it's just about her long crying jags and puking (it does talk about her smiling all the time at 2 weeks old!) anyway, her first few months are different enough to Elles that you really aren't missing much.


14 comments:

Marcus said...

Interesting. Elles did spit up a lot, didn't she? I wonder if that's why.

Emily said...

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.

B said...

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.

Cat said...

I think Marcus=Haley today. And that was way interesting to watch. I love and miss Mystery Diagnois so much. Great show.

Emily said...

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.

Emily said...

Oh, and just that way that baby moves totally reminds me of Elles.

Amy said...

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.

Haley said...

Yep it was me. :) I just didn't feel like correcting myself after it posted as him. Annoying!

Long Island Girl said...

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

Emily said...

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.

Sue said...

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!

Haley said...

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.

megandjon said...

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!

Anil Rajanala said...

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!
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