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JennCo
My greatest joy is my baby boy
Member since 1/07 2772 total posts
Name:
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Re: Today is the saddest day of my life so far
i am so sorry  i will pray for you and your sweet little girl
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Posted 8/25/10 2:46 PM  |
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Long Island Weddings
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Janice
Sweet Jessie Quinn
Member since 5/05 27567 total posts
Name:
Janice
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Re: Today is the saddest day of my life so far
I am so very sorry. Hopefully yesterday was the saddest and today is a little better.
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| Posted 8/25/10 3:03 PM |
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stayandjohn
Our life is complete
Member since 5/05 5909 total posts
Name:
Stacey
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 4:16 PM |
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~Colleen~
my loves...
Member since 5/05 9129 total posts
Name:
guess
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Re: Today is the saddest day of my life so far
I'm so sorry... 
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| Posted 8/25/10 4:21 PM |
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BMonster
:)
Member since 2/06 2959 total posts
Name:
Denise
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Re: Today is the saddest day of my life so far
I'm so sorry As someone who has been through a lot after finding out DS has a rare genetic condition, I understand. Also know that even though they'll know the genetic mutation, from what Drs have told me and from our experience, it's not a sentence. DS isn't supposed to be doing all he is right now based on his genetic mutation, so I guess his case is less severe than they thought it would be. I hope this is the case for your precious DD as well. I hope that makes sense.
Sending you lots of  &
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| Posted 8/25/10 4:35 PM |
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Re: Today is the saddest day of my life so far
I am so sorry. I promise to pray for you DD bc the power of prayer can turn this around
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| Posted 8/25/10 4:54 PM |
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nferrandi
too excited for words
Member since 10/05 18538 total posts
Name:
Nicole
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 5:06 PM |
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shazza211
My life is complete
Member since 9/07 1580 total posts
Name:
Sharon
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Re: Today is the saddest day of my life so far
so sorry!
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| Posted 8/25/10 5:35 PM |
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Phyl
R.I.P. Sweet Mia ♥
Member since 5/06 28918 total posts
Name:
The Mystical Azzhorse! ™
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 5:50 PM |
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MrsSpring
I'm a lucky mama
Member since 1/10 7585 total posts
Name:
L
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 5:52 PM |
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littlejoy06
Love
Member since 3/07 6944 total posts
Name:
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Re: Today is the saddest day of my life so far
I'm so sorry. Praying!!!!
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| Posted 8/25/10 6:01 PM |
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MrsScott
So in Love
Member since 1/09 3356 total posts
Name:
Shawna
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 6:02 PM |
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Kotka
Mom to two boys :)
Member since 5/05 3384 total posts
Name:
Jola
(pronounced Yola)
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 6:04 PM |
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an9elic
♥ HJ ♥
Member since 6/07 3331 total posts
Name:
kristen
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Re: Today is the saddest day of my life so far
i am so sorry to hear this, you are in my prayers...
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| Posted 8/25/10 6:09 PM |
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Moehick
Ready for the sun!
Member since 5/05 30339 total posts
Name:
Properly perfect™
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Re: Today is the saddest day of my life so far
Many prayers
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| Posted 8/25/10 6:40 PM |
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cjik
Welcome 2010!
Member since 2/06 8879 total posts
Name:
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Re: Today is the saddest day of my life so far
I am so sorry to hear you are dealing with such horrible news.
I hope they are wrong, or things aren't as bad as predicted so far.
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| Posted 8/25/10 8:27 PM |
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MsMBV
:P
Member since 5/05 28602 total posts
Name:
Me
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 10:46 PM |
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tiki03
*************
Member since 9/05 8660 total posts
Name:
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 11:22 PM |
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Blissful
Ultimate Expression of LOVE
Member since 6/08 4985 total posts
Name:
Maria
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Re: Today is the saddest day of my life so far
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| Posted 8/25/10 11:52 PM |
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LAMGAJ28
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Member since 10/05 6039 total posts
Name:
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Re: Today is the saddest day of my life so far
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| Posted 8/26/10 12:06 AM |
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ChaTTerBoX
LIF Infant
Member since 2/10 245 total posts
Name:
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Re: Today is the saddest day of my life so far
I am so sorry to hear about your sad news. I do have something to share. I have worked with children with Prader Willi.It is amazing what the various therapies can do! With time, these children were very successful.
FM me for more information!
WISHING YOU THE BEST!
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| Posted 8/26/10 12:09 AM |
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JennP
LIF Adult
Member since 10/06 3986 total posts
Name:
Jenn
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Re: Today is the saddest day of my life so far
I am so sorry to hear this. Sending lots of hugs and prayers.
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| Posted 8/26/10 12:34 AM |
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Ladybug3
Two is better than one!!!
Member since 12/07 4474 total posts
Name:
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Re: Today is the saddest day of my life so far
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| Posted 8/26/10 8:36 AM |
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pharmcat2000
Mom of 2 + 1
Member since 10/05 7395 total posts
Name:
Catherine
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Re: Today is the saddest day of my life so far
Posted by AimeeE2006
How did you find out? Was she showing signs that something might be wrong?
She has delays in gross and fine motor and speech delays. I've known since she was about 7 months old that something was not right. Everybody just kept telling me that she's just delayed...that she'll catch up with therapy. We started therapy when she was 7 months old. Now that she is 15 months old, she has made little progress. I've continued going to doctors looking for an answer. I finally got an appt. in August with a developmental pediatrician. She saw Erin for about 15 minutes and said that it is either the Angelman or Prader-Willi. The neurologist had already ordered a DNA microarray. When the results came back on Tuesday it said that there is definately the deletion, and further testing needs to be done to determine which it is. But I don't need further testing, I know which one it is. She has all the symptoms of Angelman Syndrome.
We have an appt. today with a different developmental pediatrician and on Monday with a geneticist. I'm hoping they can shed some light on whether it is a compete or partial deletion, which will say something about her prognosis. I'm also going to ask a million questions regarding how to best help her...what will work and what won't, etc. I think that now that we know what we're dealing with, the approach may change.
I know that this diagnosis isn't a "sentence" so to speak, but I do feel like I will never be truly happy again.
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| Posted 8/26/10 11:37 AM |
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pharmcat2000
Mom of 2 + 1
Member since 10/05 7395 total posts
Name:
Catherine
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Re: Today is the saddest day of my life so far
Posted by smdl
The amnio does NOT detect all the chromosone issues. Only the main one. There are about 1000 possible chromosone problems. Each one is to be done individually to be sure.
Well it should. They found this by running a simple DNA microarray...nothing specific.
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| Posted 8/26/10 11:39 AM |
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