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#1395378 - 05/24/10 09:12 PM Re: A Happy Update... Busy Bee, CRCM
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
Thanks!

And Pale your comments were lovely, thank you too.

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#1395403 - 05/24/10 11:24 PM Re: A Happy Update... QCL
Princess Romeo Offline

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Princess Romeo
Joined: Jun 2001
Posts: 8,272
Where the heart is
Congratulations! I think my daughter's Kindergarten graduation was more emotional for me than her high school graduation. My best wishes for your and her continued strength and health.
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#1396644 - 05/26/10 07:51 PM Re: A Happy Update... Princess Romeo
East Texas Offline
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East Texas
Joined: Apr 2006
Posts: 1,117
And God's blessings keep flowing! Congratulations!!
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Romans 12: Read it...Live it...Don't blend in!!! smile

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#1426231 - 08/09/10 09:00 PM Re: A Happy Update... East Texas
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
And in happy Nataliebear news...I signed her up for swim-team today!!!

Prayers work. Thank to all of you that prayed for my miracle.

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#1426250 - 08/09/10 09:16 PM Re: A Happy Update... QCL
Skittles Offline
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Skittles
Joined: Sep 2002
Posts: 13,965
TN
She's now on a swim team? How cool is that. Congratulations MamaBear!!
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#1426286 - 08/09/10 09:59 PM Re: A Happy Update... Skittles
corkygirl Offline
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Posts: 4,241
middle of the country
I was blessed to spend part of Sunday with Natalie and she is a little waterbug -- a really cute one at that grin
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#1426326 - 08/09/10 11:00 PM Re: A Happy Update... corkygirl
Tigg Offline
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Tigg
Joined: Jan 2008
Posts: 6,389
Looking for My Happy Place....
Yay for Natalie!
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What would you do if you knew you could not fail? ~ Dr. R Schuller

My opinion only.

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#1426397 - 08/10/10 01:24 PM Re: A Happy Update... corkygirl
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
Originally Posted By: corkygirl
I was blessed to spend part of Sunday with Natalie and she is a little waterbug -- a really cute one at that grin


laugh We were blessed to spend it with you too!

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#1426625 - 08/10/10 04:19 PM Re: A Happy Update... QCL
pjs Offline
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pjs
Joined: Aug 2004
Posts: 10,321
oHiO
She's a beautiful girl and an amazing one at that.

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#1432464 - 08/20/10 10:06 PM Re: A Happy Update... pjs
Busy Bee, CRCM Offline
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Joined: Feb 2004
Posts: 1,089
PacificNW
Wednesday's first day of school post on Natalie's webpage has me sitting here with tears in my eyes! God is good!

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#1432624 - 08/23/10 02:13 PM Re: A Happy Update... Busy Bee, CRCM
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
Yes, He is.
Thanks!

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#1450086 - 09/30/10 02:12 PM Birthdays are a blessing. QCL
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
Today I am blessed. My little bear is now 7 years old today! laugh

For years you have prayed with us, supported us, bought our cookbooks (of which we still have some wink ), sent us care packages to the hospital, sent cards to the hospital, etc. For all of these years you have held me up to help me be a better mom. And for that I thank you.

I was reading through this very long thread and realized something... while all of this stuff (in the following post) is still a ticking time bomb inside of her, faith, hope and love are getting us through. And so much of that is due to all of you.

Thanks for being there.

Originally Posted By: QCL - MamaBEAR
The results came last night.
Most of this I am going to put on her page. But you all get the news first.

our team has been emailing back and forth all week. Discussing and calling and discussing some more.

First, the scope looked beautiful. No varices.
From wiki -> Esophageal varices are extremely dilated sub-mucosal veins in the esophagus. They are most often a consequence of portal hypertension, such as may be seen with cirrhosis or esophageal cancer; patients with esophageal varices have a strong tendency to develop bleeding. This was a HUGE fear, as the portal vein had been blocked in the past - OK not blocked. Last time it was a narrowing at the spot where they attached my portal vein to Natalie's portal vein. And that narrowing closed. (Dr. Superina was good enough to remind me that my memory had failed. wink ) Anywho, given that it's been blocked before and that this time it kind of came out of no where, all were worried that she was a candidate for a bleed.
So this, for now, gives us a sigh of relief.

The biopsy showed scaring. This means liver damage. This could have been caused by the blocked portal vein. It could have been caused by the damage sustained by her bile duct issues (where she had the tubey in for over 2 years), it could have been caused by the hepatic artery clotting within the first few days following transplant.

What it did show though was signs of Alpha-1 crazy . Antitrypsin Deficiency is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. Ummm... OK she got the liver from me. confused We thought that we'd ruled out Alpha-1 in Natalie's first 3 months of life. What does THIS mean?
Natalie and I have to be re-tested. Both a simple blood test, for which the results will be back in a matter of hours, and a genetic test that could take weeks to get the results.

So for now we know this.
Her spleen is BIG - splenomegaly for those of you that need a label. No contact sports. (Ballet and swimming and golf lessons this summer are okie dokie artichokie - her new favorite phrase )
She has mild Portal hypertension (blood pressure increase because of the lack of flow in the portal vein)
She has Portal vein thrombosis - fancy word for blockage.
Because the portal vein is narrowed or blocked, pressure in the portal vein increases. This increased pressure causes the spleen to enlarge (splenomegaly).
Her platelets are starting to drop off - another label = Thrombocytopenia (lack of clotting, fear of bleeding) because of the spleen harboring too many platelets, causing a decrease in the number of platelets in circulation. But her white blood cell count is OK. Not great. Just OK. And her neutrophil count (these are white blood cells that help fight bacteria) is adequate - as this and the white blood cell counts drop the more vulnerable you are to infectious diseases.

We know that the team decided she is not a candidate for the Rex Shunt given the survival rate for living donor recipiants - 1 in 4. She is however a candidate for the Distal splenorenal shunt (say that 3 times fast!).

for now we wait. We wait and monitor her via scopes and ultrasounds and CT scans. And wait. And pray.

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#1450097 - 09/30/10 02:21 PM Re: Birthdays are a blessing. QCL
B_F Offline
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B_F
Joined: Nov 2006
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Cincinnati, OH
MoPNB,

Thank YOU for letting us in to your life. We too have received much of the joy of watching your little miracle girl grow up so darned cute that some day, daddy is going to need to wear uniform and gun and answer the door to beat the boys off with his night stick. We've shared your joy at her good health. I can only speak for myself of course, but I'd say we've gotten as good as we've given!

So, keep posting the cute pictures, we'll keep praying, and oohing and aahing at all her adorable moments!

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#1450171 - 09/30/10 03:20 PM Re: Birthdays are a blessing. B_F
hmdagal Offline
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hmdagal
Joined: Dec 2002
Posts: 3,842
Happy birthday to the little princess!

Thanks to mom and dad for sharing her with us and for doing such a good job as parents smile

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#1450178 - 09/30/10 03:25 PM Re: Birthdays are a blessing. hmdagal
doodles Offline
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doodles
Joined: Jan 2004
Posts: 494
PA
Happy 7th Birthday Natalie!! And ditto on the sharing with us - you have been a blessing to all of us and an inspiration. Enjoy this very special day.

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#1450181 - 09/30/10 03:28 PM Re: Birthdays are a blessing. hmdagal
Quadspapa Offline
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Quadspapa
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Posts: 3,275
Quadrupletville, Texas
HAPPY BIRTHDAY!!!
You all have endured so much and kept the faith. Thanks for letting us be informed of the Princess's life during the years.

Like B F said above, we like pictures.....
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#1450221 - 09/30/10 04:10 PM Re: Birthdays are a blessing. Quadspapa
~MunQue~ Offline
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~MunQue~
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Posts: 718
HERE! I'm here!
HAPPY BIRTHDAY PRINCESS NATALIE!!!
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#1450282 - 09/30/10 05:12 PM Re: Birthdays are a blessing. ~MunQue~
Truffle Royale Offline

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She's practically my fourth grangirl, even tho I've never actually met her. Tearing up at my desk thinking back over the blessing this child has been for all of us who have come together because you were so generous in sharing her. Much love and seven (((((((hugs))))))) and STO LAT! which has never been more appropriate to wish to anyone.

TR

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#1450292 - 09/30/10 05:18 PM Re: Birthdays are a blessing. Truffle Royale
Aggs Offline
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Aggs
Joined: Nov 2009
Posts: 1,331
Hoosier Country
Happy birthday to Natalie! smile
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Opinions expressed in these threads are my own and not my employer's.

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#1450322 - 09/30/10 05:57 PM Re: Birthdays are a blessing. Aggs
Skittles Offline
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Skittles
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Posts: 13,965
TN
Happy Birthday, Natalie. You have touched so many lives.
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#1450331 - 09/30/10 06:18 PM Re: Birthdays are a blessing. Skittles
waldensouth Offline
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waldensouth
Joined: Nov 2001
Posts: 7,988
FINALLY ABOVE the gnat line
Happy Birthday Natalie! May your life be as much of a blessing to you as it has been to us!
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#1450476 - 09/30/10 10:45 PM Re: Birthdays are a blessing. waldensouth
Tigg Offline
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Tigg
Joined: Jan 2008
Posts: 6,389
Looking for My Happy Place....
Happy Birthday to Natalie. Such a blessing and miracle. smile
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What would you do if you knew you could not fail? ~ Dr. R Schuller

My opinion only.

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#1484111 - 12/22/10 05:15 PM Prayers and happy thoughts...please. Tigg
QCL Offline
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QCL
Joined: May 2002
Posts: 6,260
NW IL
Argh!!!

Hospital called, they are "concerned" with latest labs - want CT and ultrasound, they think. I am not ready for the roller coaster to start up again. Would someone say a quick prayer?

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#1484113 - 12/22/10 05:16 PM Re: Prayers and happy thoughts...please. QCL
Skittles Offline
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Skittles
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Posts: 13,965
TN
Done!
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#1484116 - 12/22/10 05:18 PM Re: Prayers and happy thoughts...please. Skittles
RR Jen Offline
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RR Jen
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Posts: 3,760
Running and riding everywhere ...
Of course!
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