Even just the few seconds they said it and the fact they only said Congenital Diaphragmatic and didn't say Hernia we know they ARE talking about CDH and now with just this SMALL bit of spreading the word I see it as the 1st step to FINALLY get the word out and 1 step closer to ENDING CDH for GOOD!
Sunday, May 29, 2011
May 29, 2011 - CDH is "Hinted" at in Local Hospital's Video!
(From Mommy's Facebook Page)
Even just the few seconds they said it and the fact they only said Congenital Diaphragmatic and didn't say Hernia we know they ARE talking about CDH and now with just this SMALL bit of spreading the word I see it as the 1st step to FINALLY get the word out and 1 step closer to ENDING CDH for GOOD!
Even just the few seconds they said it and the fact they only said Congenital Diaphragmatic and didn't say Hernia we know they ARE talking about CDH and now with just this SMALL bit of spreading the word I see it as the 1st step to FINALLY get the word out and 1 step closer to ENDING CDH for GOOD!
Friday, May 27, 2011
May 27, 2011 - Jayden has a New Playmate...
(From Grandma's Facebook Page)
Changing my profile photo in memory of Kellan, a 4 yr old CDH Cherub lost this week in a pool accident. Please keep his family in your prayers.
~~~~~~~~~~~~~~
It just makes no sense! This little guy fought so HARD & beat the odds against the CDH monster, only to lose his life to an accident???
~~~~~~~~~~~~~~
Changing my profile photo in memory of Kellan, a 4 yr old CDH Cherub lost this week in a pool accident. Please keep his family in your prayers.
~~~~~~~~~~~~~~
It just makes no sense! This little guy fought so HARD & beat the odds against the CDH monster, only to lose his life to an accident???
~~~~~~~~~~~~~~
Tuesday, May 24, 2011
May 24, 2011 - Keep CDH Awareness Trucking in Memory of Jayden!
(From Grandma's Facebook Page)
^^^^^^^^^^^^^^l |^^^^^^^^^^| l
| ♥ INCREASE CDH AWARENESS ♥ .....||”"”;..,___.
|……_______=====_| l______________l _||__|…, ] | |
“(@)’(@)”""""""*l'(@)l'(@)l """"""""""""""(@)'(@)""""'(@)
Put this on your status & keep this convoy going.
^^^^^^^^^^^^^^l |^^^^^^^^^^| l
| ♥ INCREASE CDH AWARENESS ♥ .....||”"”;..,___.
|……_______=====_| l______________l _||__|…, ] | |
“(@)’(@)”""""""*l'(@)l'(@)l """"""""""""""(@)'(@)""""'(@)
Put this on your status & keep this convoy going.
Monday, May 23, 2011
May 23, 2011 - Voting for Vivint in Honor of Clara & Samuel
(From Grandma's Facebook Page)
Today we vote in honor of CHD baby Clara who is almost 2 months old & just stepped down to the Intermediate Nursery from the NICU on Thurs, and in memory of CDH baby Samuel whose parents had to say goodbye on Christmas Eve after such a courageous fight!
Please join us in voting for CHERUBS so they can help of these most precious children & the families!
Today we vote in honor of CHD baby Clara who is almost 2 months old & just stepped down to the Intermediate Nursery from the NICU on Thurs, and in memory of CDH baby Samuel whose parents had to say goodbye on Christmas Eve after such a courageous fight!
Please join us in voting for CHERUBS so they can help of these most precious children & the families!
Saturday, May 21, 2011
May 21, 2011 - Today we vote in honor of Benjamin & Ava
(From Grandma's Facebook Page)
Today we vote in honor of Cherub baby Benjamin who had corrective surgery 2 days ago & in memory of Cherub Ava whose 47 days on ECMO was an incredible testimony to these babies will to fight & doctor's willingness to give her a chance. May her pink boxing gloves glow with gold in Heaven!
PLEASE VOTE!
Today we vote in honor of Cherub baby Benjamin who had corrective surgery 2 days ago & in memory of Cherub Ava whose 47 days on ECMO was an incredible testimony to these babies will to fight & doctor's willingness to give her a chance. May her pink boxing gloves glow with gold in Heaven!
PLEASE VOTE!
Friday, May 20, 2011
May 19/20, 2011 - 14 Months Since Jayden was Born...
(From Grandma's Facebook Page)
May 19, 2011
Today's votes are in honor of baby Matthew whose parents drove ALL THE WAY ACROSS THE COUNTRY to get him from California to Shands in Florida. He is now he working on feeding so he can go home, and memory of Shane Torrence. We wish he were here with us but I bet he is SO proud of what his mom Dawn has done to make CHERUBS what it is today!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
May 20, 2011
Today we are voting in honor of Tracy, a 42 yr old Cherub that only found out she had CDH at 39 & is still waiting for surgery (long story).
Yes, this in NOT the 1st adult undiagnosed How many more are there?
Also I am voting in memory of Cherub Brielle. Her family is honoring her memory by hosting Breath's For Brielle "Bubble Walk for CHERUBS". CDH may have taken her but her spirit lives on!
May 19, 2011
Today's votes are in honor of baby Matthew whose parents drove ALL THE WAY ACROSS THE COUNTRY to get him from California to Shands in Florida. He is now he working on feeding so he can go home, and memory of Shane Torrence. We wish he were here with us but I bet he is SO proud of what his mom Dawn has done to make CHERUBS what it is today!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
May 20, 2011
Today we are voting in honor of Tracy, a 42 yr old Cherub that only found out she had CDH at 39 & is still waiting for surgery (long story).
Yes, this in NOT the 1st adult undiagnosed How many more are there?
Also I am voting in memory of Cherub Brielle. Her family is honoring her memory by hosting Breath's For Brielle "Bubble Walk for CHERUBS". CDH may have taken her but her spirit lives on!
Thursday, May 19, 2011
May 19, 2011 - Many THANKS to our CDH friends!
(From Grandma's Facebook Page)
I am absolutely AMAZED at the number of CDH friends who helped the NMF win $25K in round 1 in the Chase Community Giving contest. <tear!>
Round 2 starts today & runs until May 25th for the possibility of winning an even bigger amount.
I am asking ALL my family & friends to join us in helping to "Have-a-Heart for Marfan". If not for all the hard work & research the NMF does my Marfan husband might not be with us!
(At the time this was posted, Mommy & Grandma had not yet been diagnosed with Marfan syndrome yet)
I am absolutely AMAZED at the number of CDH friends who helped the NMF win $25K in round 1 in the Chase Community Giving contest. <tear!>
Round 2 starts today & runs until May 25th for the possibility of winning an even bigger amount.
I am asking ALL my family & friends to join us in helping to "Have-a-Heart for Marfan". If not for all the hard work & research the NMF does my Marfan husband might not be with us!
(At the time this was posted, Mommy & Grandma had not yet been diagnosed with Marfan syndrome yet)
Wednesday, May 18, 2011
May 18, 2011 - Voting in Vivint in honor of Ciaran & Bryson
(From Grandma's Facebook Page)
Today I am voting in honor of baby Ciaran who was born May 5th, had surgery May 15th and is working on getting stronger, and in memory of baby Bryson who grew his wings on May 5th.
Please join me in voting to support ALL these precious ones & their families!
Today I am voting in honor of baby Ciaran who was born May 5th, had surgery May 15th and is working on getting stronger, and in memory of baby Bryson who grew his wings on May 5th.
Please join me in voting to support ALL these precious ones & their families!
Tuesday, May 17, 2011
May 17, 2011 - CHERUBS is competing in the Vivint Contest
(From Grandma's Facebook Page)
Everyday this week I am picking a name of a Cherub who is fighting for life to vote in honor of & a Cherub angel to vote in memory of.
For today I am voting in honor of 7 month baby Sofia who was doing well & stopped breathing unexpectedly & is fighting hard, & of course in memory of our beloved Jayden who would have been 15 months old on Thurs...
Everyday this week I am picking a name of a Cherub who is fighting for life to vote in honor of & a Cherub angel to vote in memory of.
For today I am voting in honor of 7 month baby Sofia who was doing well & stopped breathing unexpectedly & is fighting hard, & of course in memory of our beloved Jayden who would have been 15 months old on Thurs...
Thursday, May 12, 2011
May 12, 2011 - 2 More Cherubs Lost... :'(
(From Grandma's Facebook Page)
Grandma Posted:
Changing my profile in memory of 2 CDH Cherubs lost so far this week. Baby Bryson was born preemie & grew his wings on Sunday & baby Phoenix was lost on Monday after a hard fight against CDH.
Please keep both their families in your prayers. Fly High Little Ones!!!
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Grandma Posted:
Changing my profile in memory of 2 CDH Cherubs lost so far this week. Baby Bryson was born preemie & grew his wings on Sunday & baby Phoenix was lost on Monday after a hard fight against CDH.
Please keep both their families in your prayers. Fly High Little Ones!!!
Sunday, May 8, 2011
May 8, 2011 - Happy Mother's Day!
(From Grandma's Facebook Page)
May 8, 2011
Happy Mother's Day to my Mom (who put up with me all these years!) and my daughters L. & Alicia.
Thank you Mom for all you did, I could only hope to be a good 2nd to you.
L., you and I may have our issues, but I am still VERY proud of the mom that you are to B. & K.
Alicia, I am SO proud of the mommy you've been to Jayden. I know he is looking down on you proudly!
I Love You All!!! ♥♥♥
May 8, 2011
Happy Mother's Day to my Mom (who put up with me all these years!) and my daughters L. & Alicia.
Thank you Mom for all you did, I could only hope to be a good 2nd to you.
L., you and I may have our issues, but I am still VERY proud of the mom that you are to B. & K.
Alicia, I am SO proud of the mommy you've been to Jayden. I know he is looking down on you proudly!
I Love You All!!! ♥♥♥
Thursday, May 5, 2011
Saturday, April 30, 2011
April 30, 2011 - Cherubs Lost in April 2011
Please pray for the families of all these Cherubs lost in April... :'(
♥ Maddox ♥ Straton ♥ Lucy ♥ Sofia ♥
♥ Maddox ♥ Straton ♥ Lucy ♥ Sofia ♥
Friday, April 29, 2011
April 29, 2011 - We need to win this and HELP our babes...
(From Mommy's Facebook Page)
We need to win this and HELP our babes and finally tell the world we will NOT lose 1 more baby to this EVIL!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CHERUBS with the Vivint Gives Back Project | Vivint
www.voteforcdh.org
Wednesday, April 27, 2011
April 27, 2011 - A Friend Posted this for Mommy & Grandma...
Little Angels
When God calls little children
to dwell with Him above.
We mortals sometimes question
the wisdom of His love.
For no heartache compares with
the death of one small child,
who does so much to make our world
seem wonderful and mild.
Perhaps God tires of calling
the aged to His fold.
So He picks a rosebud
before it can grow old.
God knows how much we need them
and so He takes but few,
to make the land of Heaven
more beautiful to view.
Believing this is difficult
still somehow me must try.
The saddest word mankind know
will always be "Goodbye".
So when a child departs
we who are left behind,
must realize God loves children,
Angels are hard to find.
~Author Unknown
When God calls little children
to dwell with Him above.
We mortals sometimes question
the wisdom of His love.
For no heartache compares with
the death of one small child,
who does so much to make our world
seem wonderful and mild.
Perhaps God tires of calling
the aged to His fold.
So He picks a rosebud
before it can grow old.
God knows how much we need them
and so He takes but few,
to make the land of Heaven
more beautiful to view.
Believing this is difficult
still somehow me must try.
The saddest word mankind know
will always be "Goodbye".
So when a child departs
we who are left behind,
must realize God loves children,
Angels are hard to find.
~Author Unknown
Monday, April 25, 2011
April 25, 2011 - This is why research is needed!!
(From Grandma's Facebook Page)
This is why research is needed!!
If we can PREVENT CDH or help expand prenatal treatments like gel tracheal occlusion or other treatments we haven't even thought of yet we can save so many more babies & save families, insurance companies & taxpayers money!
Saving lives & money? Now that would be a Win-Win!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is why research is needed!!
If we can PREVENT CDH or help expand prenatal treatments like gel tracheal occlusion or other treatments we haven't even thought of yet we can save so many more babies & save families, insurance companies & taxpayers money!
Saving lives & money? Now that would be a Win-Win!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Costs of congenital diaphragmatic hernia repair in the United States-extracorporeal membrane oxygenation foots the bill.
Raval MV, Wang X, Reynolds M, Fischer AC.
Source
Division of Research and Optimal Patient Care,
American College of Surgeons,
Chicago, IL 60611, USA.
m-raval@md.northwestern.edu
J Pediatr Surg. 2011 Apr;46(4):617-24.
doi: 10.1016/j.jpedsurg.2010.09.047.
Abstract
BACKGROUND:
Congenital diaphragmatic hernia (CDH) is the costliest noncardiac congenital defect.
Extracorporeal membrane oxygenation (ECMO) is a treatment strategy offered to those babies with CDH who would not otherwise survive on conventional therapy.
The primary objective of our study was to identify the leading source of expenditures in CDH care.
METHODS:
All patients surviving CDH repair were identified in the Kids' Inpatient Database (KID) from 1997 to 2006, with costs converted to 2006 US dollars.
Patients were categorized into groups based on severity of disease for comparison including CDH repair only, prolonged ventilator dependence, and ECMO use.
Factors associated with greater expenditures in CDH management were analyzed using a regression model.
RESULTS:
Eight hundred thirty-nine patients from 213 hospitals were studied.
Extracorporeal membrane oxygenation use decreased from 18.2% in 1997 to 11.4% in 2006 (P = .002).
Congenital diaphragmatic hernia survivors managed with ECMO cost more than 2.4 times as much as CDH survivors requiring only prolonged ventilation post-repair and 3.5 times as much as those with CDH repair only (both P < .001).
Age, multiplicity of diagnoses, patient transfer, inhaled nitric oxide use, prolonged ventilation, and ECMO use were all associated with higher costs.
Extracorporeal membrane oxygenation use was the single most important factor associated with higher costs, increasing expenditures 2.4-fold (95% confidence interval, 2.1-2.8).
Though the CDH repair with ECMO group constituted 12.2% of patients, this group has the highest median costs ($156,499.90 / patient) and constitutes 28.5% of national costs based on CDH survivors in the KID.
Annual national cost for CDH survivors is $158 million based on the KID, and projected burden for all CDH patients exceeds $250 million/year.
CONCLUSIONS:
Extracorporeal membrane oxygenation use is the largest contributing factor to the economic burden in CDH.
With limited health care resources, judicious resource utilization in CDH care merits further study.
Copyright © 2011 Elsevier Inc. All rights reserved.
PMID: 21496527 [PubMed - indexed for MEDLINE]
Wednesday, April 20, 2011
April 20, 2011 - Exciting news for raising CDH awareness week!!!
(From Grandma's Facebook Page)
Exciting news for raising CDH awareness week!!!!
A Cherub survivor (who also has a Cherub angel brother in Heaven with our Jayden) WON in a Ralph Lauren model contest!!!! GREAT JOB Celie!!!!
--- Announcing the RL Gang Grand Prize Winner! Congratulations to Celie, the newest member of the RL Gang. Thank you to everyone who entered and voted and a special thank you to the amazing finalists. ---
Exciting news for raising CDH awareness week!!!!
A Cherub survivor (who also has a Cherub angel brother in Heaven with our Jayden) WON in a Ralph Lauren model contest!!!! GREAT JOB Celie!!!!
--- Announcing the RL Gang Grand Prize Winner! Congratulations to Celie, the newest member of the RL Gang. Thank you to everyone who entered and voted and a special thank you to the amazing finalists. ---
Tuesday, April 19, 2011
April 18th & 19th, 2011 - Going to Visit Jayden...
(From Grandma's Facebook Page)
Alicia & I will be going up to visit Jayden & if the weather is good will do a balloon release for him & all our Cherubs. It will also be his 14 month birthday. Holding him & all the Cherubs close in our hearts as we hope to get the word out. I will try to get video to post.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Was able to do the balloon release but I had to go to work before I could up load the pictures. Will work on it tonight!
April 19, 2011 at 6:10pm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Alicia & I will be going up to visit Jayden & if the weather is good will do a balloon release for him & all our Cherubs. It will also be his 14 month birthday. Holding him & all the Cherubs close in our hearts as we hope to get the word out. I will try to get video to post.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Was able to do the balloon release but I had to go to work before I could up load the pictures. Will work on it tonight!
April 19, 2011 at 6:10pm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
For family & friends who didn't see it before, THIS is why we are so passionate about CDH!!!
If you are touched by his story, feel free to share!
http://www.youtube.com/watch?v=JWwo9a7xeyw
http://www.youtube.com/watch?v=JWwo9a7xeyw
Sunday, April 17, 2011
April 17, 2011 - Please sign the petition!
(From Grandma's Facebook Page)
Shelly shared a link.
CDH took the life of my precious grandson Jayden. No one knows what causes it meaning we don't know how to prevent it. Research is the key but it costs money. Every 10 minutes a baby is born with CDH & 50% them will die. It takes less than 2 minutes to sign this petition. Can you spare 2 minutes to help?
Shelly shared a link.
CDH took the life of my precious grandson Jayden. No one knows what causes it meaning we don't know how to prevent it. Research is the key but it costs money. Every 10 minutes a baby is born with CDH & 50% them will die. It takes less than 2 minutes to sign this petition. Can you spare 2 minutes to help?
Tuesday, April 5, 2011
April 5 & 6, 2011 - Jayden's Now Has Personalized CDH Awareness Items!
Jayden has his CDH Awareness items we can get from CHERUBS!
Personalized Congenital Diaphragmatic Hernia Awareness Ribbons with photo and name of a real life cherub made for family & friends to promote finding the cause, prevention and best treatment for CDH.
http://www.cafepress.com/cherubs/7768246
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Keep Jayden's memory alive on his 14 month birthday and support CHERUBS in any way you can. For our family & friends I can send you a copy of Jayden's personalized awareness ribbon to post on you profile picture for April 14th in support if you life. Our special little boy touched so many... help him & CHERUBS reach out to many more!
Personalized Congenital Diaphragmatic Hernia Awareness Ribbons with photo and name of a real life cherub made for family & friends to promote finding the cause, prevention and best treatment for CDH.
http://www.cafepress.com/cherubs/7768246
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Keep Jayden's memory alive on his 14 month birthday and support CHERUBS in any way you can. For our family & friends I can send you a copy of Jayden's personalized awareness ribbon to post on you profile picture for April 14th in support if you life. Our special little boy touched so many... help him & CHERUBS reach out to many more!
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