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We are a group of friends who have come together because we share the common bond of caring for someone who has Trisomy 21. We are here to share therapy tips, medical issues, laughs, accomplishments and yes, even frustrations. We embrace what Trisomy 21 has brought into our lives. We feel that it has taught us to appreciate the true meaning of life. We count our children as blessings! We will fiercely protect them and fight for their lives to be valued just as all other peoples' are. We share our pictures, our stories and our hearts here not only to provide friendship and support for each other, but also in the hopes that others will open their minds and their hearts to our unique children and, in turn, make a better world for everyone.

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Joey's 1st cardiologist appointment tomorrow...

June 18 2008 at 7:53 PM

Jessica  (Login RaisingJoey)

Any pointers, words of wisdom??

Joey doesn't have any major heart defects that we know of. When I was pregnant with him, I had a fetal echocardiogram done so we know he doesn't have any major problems.

I guess I'm just nervous...

Lilypie 3rd Birthday Ticker
Lilypie1st Birthday Ticker

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Vicki, Emme's mom
(Login gvnees)


June 18 2008, 9:57 PM 

does he have an appt? that seems odd if there were never any problems???

Vicki, mom to Mackenzie (4) Emerson "Emme" (May 06, DS) and Austin (9/07)


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(Login cmedrano99)

I know why! Important!

June 19 2008, 9:51 AM 

Knowing what I know now....
You can develope heart issues as you grow.
Courtney (my oldest) was never seen by a heart dr was told she was fine and not to worry! Well by time she was 2 1/2, I just took her for a check up to be on the safe side! No DR we seen MENTION ANYTHING and low behold... my daughter had a mitral value. It was moderate. She was on meds for a while(@4Yrs) and now it mild. Not sure what or why it different from then and now but I do know they can develope issues and the dr may not hear anything.

That is WHY....





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(Login EmilyElizabeth)

All kiddos with T21 should have an echo following birth and another one...

June 19 2008, 10:42 AM 

whenthey are around 18. Even if a fetal echo was done, one should be done at birth as well because fetal echos can miss holes and more subtle defects. If everything is good to go, then they should have a follow up at 18 to check that heart disease has not developed because people with T21 are at a higher risk for developing acquired heart disease (stenosis/ clogged arteries/ pumping issues).

Mother to Miss Emma Jayne 2-13-04
and Gabe the babe 7-12-06

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Lacia & Kaia
(Login mom2kaia)

Good luck

June 19 2008, 7:39 AM 

I hope you have a problem free appt. I find it odd though that he's never seen one before, especially since he's 2. Usually that's the first thing that is done.

Lacia - Mom to Nolan 5, Kaia 3-DS, Pierce born May 29/06

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blessed with Esther
(Login Praise7)

Praying for you

June 19 2008, 9:38 AM 

I had two echos when I was pregnant. One at 23 weeks because I had a SUA, we didn't know about the DS. That one was perfect. Then at 35 weeks because she had stopped growing and they were going to induce me. That one showed a perfect heart.

After we found out she had DS at two weeks of age, my ped suggested we go to a pedicatric cardiologist just to check.

Well, it turned out she had a HUGE VSD. They missed that and the DS prenatally.

But since your guy has gone 2 years, I imagine he is fine. Seems they would have found something by now. Praying it all goes as expected.


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(Login RaisingJoey)


June 19 2008, 10:07 AM 

His pedi never thought there was any reason for him to go but his DS dr thinks since he has a heart murmur and since his fingers and toes keep turning blue that we should have it checked out.

I asked his pedi multiple times if we should visit the cardiologist and was always told no until his fingers and toes started changing colors.

I dunno, I guess I'm just nervous...

Lilypie 3rd Birthday Ticker
Lilypie1st Birthday Ticker

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(Login EmilyElizabeth)

Didn't Joey have an echo when he was born?

June 19 2008, 10:38 AM 

Those fetal echos are great, but they have been known to miss or misdx defects before. Of course, anything considered complex or serious would have been discovered by now

Thinking of you and wishing you lots of luck!

Mother to Miss Emma Jayne 2-13-04
and Gabe the babe 7-12-06

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(Login momlorac)

Re: Joey's 1st cardiologist appointment tomorrow...

June 19 2008, 10:39 AM 

Wishing you luck. I hope all is fine.

Carol mom to Abigail 8/16/04, Emily 8/7/98 & Adam 6/17/96

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(Login arianasmom)

The big ones

June 19 2008, 11:43 AM 

to ask specifically for reassurance are PDA, VSD, and ASD. Anything else likely would be symptomatic. If any of those are there, don't panic- they will often outgrow them, but need to be monitored.

Good luck!

Ariana Azar (12/23/03)

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