November 13th, 2009
|shesnotfromhere||11:51 am - My Winkies|
1. Name - Emily
2. Age - 23
3. Where you live - near Charlotte, NC
4. Children's names/ages - Hope, 4 and Emma, 2
5. Tell us why you are here - Looking for someone to relate to/being here as someone to relate to
6. Please tell us the name of your child's condition. - Emma, my two year old, has Dandy Walker Varient, which is basically a severe brain malformation. She cannot sit up, crawl, talk, or even hold her head up...but she's my little doll baby.
Current Location: Silver Dr.
Current Mood: exhausted
August 8th, 2009
|chdmissa||11:06 pm - Hello everyone! :)|
1. Name - Missa
2. Age - 24
3. Where you live - Sheboygan, WI
4. Children's names/ages - Taeton, 3 years old
5. Tell us why you are here - Looking for parents to relate too
6. Please tell us the name of your child's condition. - My son was born with 7 heart defects. The major defects being Total anomolous pulmonary venus return, atrial septal defect, atrial ventricular defect, ventrical septal defect. Two others were random veins connected to his heart that were pumping the wrong type of blood into the area. The other defect, that was not fixed, was that his trachae goes inbetween his aorta and his pumping chambers. He also has mixed cerebral palsy.
November 8th, 2008
1. Name Kristin
2. Age 25
3. Where you live Twin Falls, ID but we're moving to Joplin, MO later this month
4. Children's names/ages Abigail 3 months
5. Tell us why you are here Abby was born with multiple birth defects, it'd be nice to talk with other parents who are there too. All my friends have had "perfect babies" so they say.
6. Please tell us the name of your child's condition. (This is for the "interests" page and will help other parents find us. If you don't want to post the condition publicly, you may post "friends only" or email the moderator.) Abby has Goldenhar Syndrome, hemivertebrae, rib abnormalities, cleft palate, deformed toes, PDA (minor heart defect), radial deviation of right wrist, microtia of the right ear, facial palsy and possible hearing loss in right ear and slight curvature of the spine.
October 8th, 2008
|shanellbrowand||04:27 pm - CDH|
WHERE DO YOU LIVE: Post Falls, ID
CHILDRENS AGES/NAMES: Ayda, 1yr.
WHY ARE YOU HERE: I am here to meet people in Idaho, Washington, and Oregon who have children with the Congenital Diaphragmatic Hernia birth defect. I have a support and awareness group and want to meet many friends and possibly others who will join me to find a cause and a cure for CDH and raise money and awareness for CDH families. Please, email me at email@example.com. God Bless
PLEASE TELL US THE NAME OF YOUR CHILDS CONDITION: Congenital Diaphragmatic Hernia
September 20th, 2008
|jeanean||06:08 pm - hi all|
1. Name Jeanean
2. Age 29
3. Where you live Orlando, FL
4. Children's names/ages n/a
5. Tell us why you are here
I am a heart patient with a congenital heart defect-tetralogy of fallot . I am also writing an article on how, those of us with heart conditions or other conditions take special preparation for a day at theme parks like Disney. I know my main concern is with keeping cool. I am interested to find out from all of you what are the special preparations, if any, you take before a day at a theme or amusement park. I'm also interested it your main concerns when you go to the park or want to go on rides?
I'd appreciate any info you can give me. Especially detailed info. I am an English student and this article with be a very important addition to my portfolio as an English major.
August 28th, 2008
|amor_demi_alma||08:34 am - Introduction|
1. Name Caitlin
2. Age 18
3. Where you live California
4. Children's names/ages n/a
5. Tell us why you are here
I happened to be born blind, and since then, I've especially loved meeting and talking with parents of children with birth defects/disabilities. I think it's very important to be able to network with all kinds of different people, especially other parents, because kids who are so-called "different" need to be exposed to other kids, both disabled and not. Parents are the ones who give their children a chance at the best possible life that they are capable of living. I thought I'd join here to hopefully get to know some of you...Even though I'm young, I love meeting parents and hearing about their little ones. And I'd be glad to tell you what it was like growing up with two awesome parents who were learning right along with me!
Hope it's okay that I joined here! This looks like a wonderfully supportive place.
Looking forward to meeting all of you,
Current Mood: cheerful
April 14th, 2008
|eryie||07:44 pm - Intro|
1. Name: Erin
2. Age: 26
3. Where you live: Ridgecrest, CA
4. Children's names/ages: Harley Quinn (5 yrs), Jonathan Conor (10 1/2 mons)
5. Tell us why you are here: I don't have anyone really for support.....parental wise..who know what it's like to have a child with "problems". I hope to find it here.
6. Please tell us the name of your child's condition. (This is for the "interests" page and will help other parents find us. If you don't want
to post the condition publicly, you may post "friends only" or email the moderator.): My son has Hypospadias, a Sacral Dimple, and prematurity. As far as we know the Sacral Dimple is closed and doesn't prove to have issues with it that are typical with that. The Hypospadias is being corrected with surgery (in 2 days actually). Though Jonathan went into distress and died, and obviously was almost 2 months early, he's proven to be developing average or above average on across the board.
7. Pic(s): See avatar....
November 16th, 2007
|delilahmaxine||02:50 pm - Hello, looking for support...|
1. Name: Becca
2. Age: 23
3. Where you live: Spokane, Wa
4. Children's names/ages: Micah, age 3 months
5. Tell us why you are here: My son Micah was born with a bilateral cleft lip and palete
6. Please tell us the name of your child's condition: Bilateral Cleft Lip and Palete
7. Pic(s): My LJ Photo Gallery
Current Mood: anxious
October 18th, 2007
1. My name is Rose
2. I am 23.
3. We live in Los Angeles / Chicago
5. I am here to find information on my congenital heart defect
6. I was born with half a heart, two chambers. Recently I have experienced ventricular fibrillation which my doctors refuse to diagnose and treat so I am taking it into my own hands. I want to learn more about the implanted defibrillator.
7. My user pic is old and I don't even like Blake Lewis or Chris Richardson from American Idol season 6 anymore
October 8th, 2007
|monkey_n_banana||10:27 pm - Intro|
1. My name is Amanda but everyone calls me Banana
2. I am 27.
3. We live in the US
4. My 14 month old son is named Michael, but we call him Monk (monkey)
5. I am here to find encouragment and help, and to give hope and strength through our success story
6. My son was born with a Congenital Diaphragmatic Hernia (CDH)
7. My user pics are all monkey all the time!
Current Mood: calm