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BMonster
:)
Member since 2/06 2959 total posts
Name:
Denise
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Re: DS is scheduled for surgery April 9th...
Posted by dm24angel
i dont know how you do it. You really stay positive all the time when faced iwth so much. I think of you often when I get upset over petty things and tell myself to be grateful .
I would be so scared, and Im sure you are too, but you have a ton of support, great Dr's and your sons such a fighter!
I wish I had info ont he surgery , I dont. But please give us an update if you can afterwards.
Thanks, that's so sweet  I guess I look at it as we can either lie down, be upset and pity us with all we've been through (if that makes sense), or just deal with it the best we can. I've learned over the years to not stress so much over things I can't control. He definitely has this and surgery is the only way he going to get better. I am nervous about the surgery, but we have no choice, so we deal.
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Posted 3/28/08 8:02 AM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
MyChip-n-Dales
lifes many lil twisted curves
Member since 10/07 5158 total posts
Name:
aeriell
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Re: DS is scheduled for surgery April 9th...
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| Posted 3/28/08 8:08 AM |
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jprimrose
I love my little munchkins!
Member since 10/05 3939 total posts
Name:
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Re: DS is scheduled for surgery April 9th...
Best of luck with the surgery.
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| Posted 3/28/08 8:45 AM |
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Diana1215
Living on a prayer!!!
Member since 10/05 29450 total posts
Name:
Diana
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Re: DS is scheduled for surgery April 9th...
Like Ang, Jack and I will add Ethan to our nightly prayers (and his mommy and daddy too! )
We'll be hoping he'll be all ready to celebrate his First Birthday too!!
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| Posted 3/28/08 8:48 AM |
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IrishTracy
Believe!!
Member since 5/05 15167 total posts
Name:
Tracy
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Re: DS is scheduled for surgery April 9th...
Tons of prayers for Ethan!! And some hugs for Mommy & Daddy!
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| Posted 3/28/08 8:52 AM |
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LuvMy2Girls
@>---------
Member since 5/05 11165 total posts
Name:
Mommy
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Re: DS is scheduled for surgery April 9th...
Best of luck
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| Posted 3/28/08 8:53 AM |
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Diane
Hope is Contagious....catch it
Member since 5/05 30683 total posts
Name:
D
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Re: DS is scheduled for surgery April 9th...
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| Posted 3/28/08 8:54 AM |
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SweetCin
My green-eyed boy
Member since 5/05 13499 total posts
Name:
Cin
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Re: DS is scheduled for surgery April 9th...
Best of luck!
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| Posted 3/28/08 8:55 AM |
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cgdg61606
Little Brother Christopher
Member since 2/07 6815 total posts
Name:
Christine
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Re: DS is scheduled for surgery April 9th...
He will be in my prayers!
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| Posted 3/28/08 9:10 AM |
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mommy2bella
Where does time go?
Member since 12/05 9747 total posts
Name:
Kelly
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Re: DS is scheduled for surgery April 9th...
Many hugs and prayers for ETHAN!!!!
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| Posted 3/28/08 9:26 AM |
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nferrandi
too excited for words
Member since 10/05 18538 total posts
Name:
Nicole
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Re: DS is scheduled for surgery April 9th...
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| Posted 3/28/08 9:28 AM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: DS is scheduled for surgery April 9th...
Posted by BMonster
Thanks everyone. All thoughts & prayers are much appreciated I'll let you know how it goes.
Posted by hbugal
None of my kids have/had Hirschsprung's Disease but I know a lot of parents who's children have had it...(That might sound a bit odd but my daughter has Down Syndrome and it's rather common in children with Down Syndrome.)
What procedure is he having done?
Thanks. Doesn't sound weird at all. I know it's commonly related to genetic disorders. DS has x-linked hydrocephalus, which is rare and now this, makes him even more rare. My Dr has only heard of 5 cases total in the US who have had this combo.
Anyway, he's having it all in one procedure. They'll be doing biopsies laparoscopically to figure out how much of the intestines to remove (they don't think it'll be much), then cut & reattach anally.
I sent out a couple of emails to my Down Sydnrome Mommies to see if they had any advice to you on the procedure...
One had the colostomy procedure first that much I know..the other 2 Im pretty sure had the whole procedure done at once. Im not sure exactly why Jared had the colostomy..I think b/c he was pretty sick and they didnt want to do it until he was better..
I'll FM you when they get back to me....
Ive never heard of x-linked hydrocephalus...I was originally going to school for Genetic Counceling so Im pretty well versed in Genetic Disorders but this was a new one for me...
Let's see if I cant put this the right way....it's those really rare little ones out there that are simply true miracles..their abilities never cease to amaze everyone around them..they bring people together..they restore faith to jaded doctors...they teach us..and are truly truly gifts..
My daughter is Mosaic which is only 1% of all children with Down Sydnrome..so she's pretty rare herself...
For Ethan....please keep us posted. We'll be thinking about you.
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| Posted 3/28/08 10:42 AM |
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Tah-wee-ZAH
Kisses
Member since 5/05 15952 total posts
Name:
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Re: DS is scheduled for surgery April 9th...
Many for Ethan.
Many to you and your DH. You are an AWESOME mom
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| Posted 3/28/08 10:51 AM |
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curley999
Family!
Member since 5/05 2314 total posts
Name:
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Re: DS is scheduled for surgery April 9th...
My oldest DD had lots of gastro issues and was thought to have hirshsprungs but it was later ruled out so I have read alot of about this. Just wanted to offer many and that everything goes smoothly and he is home quickly.
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| Posted 3/28/08 11:02 AM |
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juanvi
Get Out!
Member since 10/06 4463 total posts
Name:
Christina
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Re: DS is scheduled for surgery April 9th...
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| Posted 3/28/08 11:03 AM |
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BMonster
:)
Member since 2/06 2959 total posts
Name:
Denise
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
UPDATE:
Thanks for all the hugs, thoughts and prayers. We so appreciate it!
The doctors (and us too) were convinced that he has Hirschsprung's Disease. But we needed a 2nd biopsy to make sure (the first one wasn't conclusive). So we had to have another biopsy done Monday. Late Tuesday the surgeon told us that the test came back normal and the surgery is cancelled for Wed.
We are relieved that he doesn't need surgery, but disappointed that now we don't know what's going on. At least before we had an answer and a solution. We're extremely concerned bc DS has been gaining and losing weight for months that he right now weighs just over what he did in NOV We're praying we get an answer soon. For now it's about managing his issues so it doesn't get out of control until we know how to solve it.
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| Posted 4/11/08 11:36 AM |
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Ang-Rich
Beyond Compare
Member since 5/05 17988 total posts
Name:
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
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| Posted 4/11/08 11:38 AM |
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angelbear217
Mommy of 2
Member since 5/05 4313 total posts
Name:
Lisa
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
Oh Denise,
I am so sorry that you are going through all of this. I hope that you get some answers soon. Ethan is in my thoughts and prayers.
Hope he has a wonderful 1st birthday!
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| Posted 4/11/08 11:44 AM |
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nmp070106
My girls!!
Member since 8/06 5843 total posts
Name:
Nicole
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
 I hope you guys get answers soon....
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| Posted 4/11/08 11:47 AM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
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| Posted 4/11/08 11:52 AM |
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DUCKS2001
Then there was 2
Member since 3/06 5696 total posts
Name:
Christine
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
i pray you get your anwers soon
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| Posted 4/11/08 10:13 PM |
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Briannasmommy
Love her so much <3
Member since 5/05 15567 total posts
Name:
Christina
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
I pray u get some answers
How did his party go
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| Posted 4/11/08 10:53 PM |
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Janice
Sweet Jessie Quinn
Member since 5/05 27567 total posts
Name:
Janice
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
we love Ethan! I hope you find your answers
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| Posted 4/11/08 11:08 PM |
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alexlynn7
Big brother to be!
Member since 9/06 6314 total posts
Name:
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Re: DS is scheduled for surgery April 9th...UPDATE Surgery was cancelled
denise, i'm SO sorry that you guys are going through this. on one hand, thank goodness he doesn't need the surgery! on the other hand, it must be so hard to think you have the solution and then find out that you don't.
keeping all of you in my prayers... i hope you find some answers soon. FM if you want to talk
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| Posted 4/12/08 12:18 AM |
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