The UPDATE Thread!

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SparkleMomma's picture
Joined: 04/24/02
Posts: 648
The UPDATE Thread!

Screen Name:
Your Name:
Your Birthday:
DH/SO Name:
DH/SO Birthday:
Anniversary:
Child{ren} Name:
Child{ren} Birthday:

Your Miracle Child Name:
Your Child's BD/SN:
Upcoming Appointment{s}:

Are you:
TTC
PG
TOC
WANTING BUT WAITING:
DONE!

Helpful Links:

SparkleMomma's picture
Joined: 04/24/02
Posts: 648

Screen Name: SparkleMomma
Your Name: Diane
Your Birthday: August 4th
SO Name: Justin {aka J}
SO Birthday: April 29th
Anniversary: January 14th, 2003
Child{ren} Name: Liam
Child{ren} Birthday: October 11th, 2000

Child{ren} Name: Micheal {aka Mikey}
Child{ren} Birthday: December 19th, 2003
**5 Angel babys in Heaven-January 14th, 1999, Twins December 10th, 1999, Baby J June 4th, 2004, Bebe March 8th, 2007**

Your Miracle Child Name: Mikey
Your Child's BD/SN: Bilateral Symbractydactyly {only has 1 complete finger-right thumb}, Hypospadias, speech delays, Bilateral Syndactyly of toes, born with epigastric hernia x2, hearing delays, Prune Belly Syndrome, minor gross motor delay. Has had 5 surgeries to date.
Upcoming Appointment{s}: Urologist~November 20th, 2008

Your Miracle Child Name: Liam
Your Child's BD/SN: ADHD, speech delays
Upcoming Appointment{s}: N/A

Are you:
WANTING BUT WAITING:

Helpful Links: Previously posted

Joined: 10/07/05
Posts: 3

Screen Name: Lauren918
Your Name: Lauren
Your Birthday: 2/24
DH/SO Name: Andy
DH/SO Birthday: 4/2
Anniversary: 7/23
Child{ren} Name: Ethan, Lucas, Maggie
Child{ren} Birthday: Ethan- 9/18/02. Lucas- 3/7/06. Maggie- 8/19/08

Your Miracle Child Name: Maggie
Your Child's BD/SN: Bone Marrow Failure, low hemoglobin, 4 transfusions to date, failure to thrive, Enlarged liver and spleen, most likely Diamond Blackfan Anemia
Upcoming Appointment{s}: Bone marrow biopsy- Nov. 4th

Are you:
Maybe done, maybe not Smile

Helpful Links: www.diamondblackfananemia.com

scrapangel's picture
Joined: 10/05/07
Posts: 807

Screen Name: Scrapangel
Your Name: Missy
Your Birthday: May 3
DH/SO Name: Steve
DH/SO Birthday: August 29
Anniversary: April 5, 2003
Child{ren} Name: Owen/Gwendolyn/Colleen
Child{ren} Birthday: April 25,2003/September 23, 2005/June 5, 2008

Your Miracle Child Name: Colleen
Your Child's BD/SN: Transposition of great vessels (corrected)
Upcoming Appointment{s}: Sometime in April will update when we have an exact date.

Are you:
TTC -
PG
TOC
WANTING BUT WAITING:
DONE!

Helpful Links: www.mendedlittlehearts.org

Joined: 03/16/15
Posts: 53852

Screen Name:Mom-n-More
Your Name: Mattie (Michelle IRL now by most)
Your Birthday:12/11/1972
DH/SO Name: Andrew
DH/SO Birthday: 12/04/1974
Anniversary: 10/06/2001
Child{ren} Name: Noah, Isaiah
Child{ren} Birthday: Noah 5/24/03, Isaiah 9/21/06

Your Miracle Child Name: Noah Patrick
Your Child's BD/SN: Right Hemiplegia Cerebral Palsy due to a stroke as a baby
Upcoming Appointment{s}: Nov 6 Physiatrist (rehab doc) with possible Botox injections

Are you:
Done ... except for that nagging little feeling that maybe someday we'll either have another one or adopt one.

Helpful Links:
http://www.chasa.org/
http://www.hemikids.org/
http://www.pediatricstroke.org/

Joined: 03/16/15
Posts: 53852

Screen Name: kariabi
Your Name: Tricia
Your Birthday: 7/7
DH/SO Name: Brian
DH/SO Birthday: 6/5
Anniversary: 11/21/98
Children's Names/Birthdays: Karissa, 02/23/00; Abigail Rose, 03/03/03; Zachary John, 03/20/06; and Cadenne Hope, 12/06/07

Your Miracle Child Name: Cadenne Hope
Your Child's BD/SN: Born with a Congenital Diaphragmatic Hernia, and in hospital for 12 wks, including ECMO days 2-7, hernia repair surgery, persistent pulmonary hypertension and chronic lung disease, g-tube, developmental delays, surgery for malrotation with volvulus, now dealing with weight gain issues and new incisional/ventral hernia. She's doing great though! A very determined young lady!
Upcoming Appointment{s}: Surgical Consult (for a new hernia that was just found yesterday, 10/31; gastroenterologist, 11/?; nephrology, 11/?

We are DONE!

Helpful Links: CDHexplanation

Joined: 03/16/15
Posts: 53852

Screen Name: ~jbjs~
Your Name: Jess
Your Birthday: 11/9
DH/SO Name: Jesse
DH/SO Birthday: 4/10
Anniversary: 8/26/02
Child{ren} Name: Billy, and Sharah
Child{ren} Birthday: 9/4/00 and 1/14/04

Your Miracle Child Name: Billy
Your Child's BD/SN: Auditory Porcessing Delay and Speech delay
Upcoming Appointment{s}: None, resolved after 4 years of ST.

Your Miracle Child Name: Sharah
Your Child's BD/SN: Torticollis
Upcoming Appointment{s}: None, resolved after 5 months of PT

Are you:
TTC
PG
TOC
WANTING BUT WAITING:
DONE!

Helpful Links:

Joined: 05/05/04
Posts: 435

Screen Name: NatalieL
Your Name: Natalie
Your Birthday: 12/7
DH/SO Name: Dan
DH/SO Birthday: 9/20
Anniversary: 6/2/2001
Child{ren} Name: Samantha May & Thomas Anthony
Child{ren} Birthday: 11/5/04 10/19/07

Your Miracle Child Name: Tom
Your Child's BD/SN: incomplete unilateral cleft lip, assumed submucous cleft palate
Upcoming Appointment{s}: We go back to his cleft team in April to have his ears rechecked. In November we're doing both of the kids' well visit checkups.

Are you:
we don't know! Either done or waiting Smile

Helpful Links:
http://www.ameriface.org/
http://widesmiles.org/

Here are my del.ici.us bookmarks on clefts (then if I find new good ones you'll get them too)
http://delicious.com/Natalie_L/cleftresources

Joined: 04/07/08
Posts: 4

Screen Name:Savannah3275
Your Name:Debbie
Your Birthday:7/15/75
DH/SO Name:Brett
DH/SO Birthday:10/28/78
Anniversary:n/a
Child{ren} Name:Steven, Katilyn, Devon, Nicholas, Noah
Child{ren} Birthday:2/18/97, 10/7/97, 9/10/00, 4/6/03, 6/24/08

Your Miracle Child Name:Noah John
Your Child's BD/SN:Total Anomolus Pulmonary Veinous Return (TAPVR), Coarctation of the Aorta, VSD (Corrected)--Cat Eye Syndrome (an abnormality of the 22nd chromosome), developmental delays
Upcoming Appointment{s}:PT/OT starts Oct 30th, Dec 16th Pediatric Opthamology appt, January 6th Audiology appt, Feb 12th Cardiology

Are you:
TTC
PG
TOC
WANTING BUT WAITING:
DONE!
DONE!

snangel's picture
Joined: 10/27/06
Posts: 6

Screen Name: Snangel
Your Name: Ruby
Your Birthday:april 29, 1981
Child{ren} Name:Caleb, Zechariah, Martin
Child{ren} Birthday: August 22, 2001, and July 23, 2004, July 24, 2006

Your Miracle Child Name: Martin Bruno
Your Child's BD/SN: Goldenhar Syndrome/ Hemifacial microsomia, epilepsy, deaf, heart defects, multiple bone/joint anomalies, gerd
Upcoming Appointment{s}:

Helpful Links:http://www.faces-cranio.org/Disord/Golden.htm

jereed's picture
Joined: 06/01/07
Posts: 9

Screen Name: jereed
Your Name: Jessica
Your Birthday: 6/2/1985
DH/SO Name: Eric
DH/SO Birthday: 8/2/1980
Anniversary: 5/20/06
Child{ren} Name: Hayden Christopher
Child{ren} Birthday: 10/17/2007

Your Miracle Child Name: Hayden Christopher
Your Child's BD/SN: T.E. Fistula (tracheaesophageal fistula), E.A. (esophageal atresia), bronchomalacia, VACTERL syndrome (VATER), gastroesophageal reflux, functional heart murmur, hypertension, anemia, right simian crease

Also ischemic stricture to his esophagus requiring frequent esophageal dilations and requires a jejunostomy tube for enternal feedings (on a trial period currently). 22 surgeries to date and 130+ days in hospital

Upcoming Appointment{s}: Nov. 5 w/ surgeon..talking about possibly starting back on feeding tube, Nov. 26 w/ pedi. for 12 month check up and shots, Dec. 30 w/ nephrologist

Are you:
WANTING BUT WAITING (me)...DH says we're done...I'll change his mind though Wink

Joined: 07/28/05
Posts: 246

Screen Name: Southernmom
Your Name: Stephanie
Your Birthday: September 12
DH/SO Name: Andy
DH/SO Birthday: August 12
Anniversary: October 12
Child{ren} Name: Theo & Zach
Child{ren} Birthday: Nov 21 & Jan 25

Your Miracle Child Name: Zach
Your Child's BD/SN: Unilateral hearing loss of 40-45% in right ear. No cause has beeen determined yet.
Upcoming Appointment{s}: Just the usual well-checks and hearing aid checks

Are you:
TTC
PG
TOC
WANTING BUT WAITING: yes, we may try again in 2012
DONE!

Helpful Links: haven't found any yet Smile

SparkleMomma's picture
Joined: 04/24/02
Posts: 648

Updated to here with birthdays and Anni's!!

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Screen Name: sarahsunshine
Your Name: Sarah
Your Birthday: June 19, 1976
DH/SO Name: Wayne
DH/SO Birthday: March 13, 1967
Anniversary: Sept 3
Child{ren} Name: Skyler (SS, 22 April 1999), Reed Aslan (DS, 17 June 2007 - 8 Sept 2008 )

Your Miracle Child Name: Skyler
Your Child's BD/SN: Aortic stenosis. Consequences: artificial mitral valve, complete hearing loss in left ear, high frequency loss in right,
Upcoming Appointment{s}: Cardia Echo sometime in January or Feb?

Are you:
PG - Due May 3

Helpful Links:
For those with children needing aortic valve replacement at some point, here's some MAJOR hope: http://www.sciencedaily.com/releases/2008/10/081021094212.htm

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Screen Name: wishing4agirl
Your Name: Angela
Your Birthday: December
DH/SO Name: Brice
DH/SO Birthday: February
Anniversary: May
Child{ren} Name: Christian, Dakota, Eli, and Faith
Child{ren} Birthday: C = April, D = May, E = July, and F = April

Your Miracle Child Name: Dakota and Eli
Your Child's BD/SN: Dakota = High Functioning Autism Eli = Originally = CoA, VSD, Bicuspid, PDA (didn't close) surgery to correct at 18 days old Currently = classified as Shone's Syndrome. Multiple Left Sided Cardiac Defects, Subclavian Steal Syndrome, and Multiple other issues.
Upcoming Appointment{s}: February 6 and February 28.

Are you:
DONE!!!

Helpful Links: Don't have any at the moment.

kerina313's picture
Joined: 09/10/05
Posts: 60

Screen Name: Kerina313
Your Name: Erin
Your Birthday: March 13
DH/SO Name: Stephen
DH/SO Birthday: May 19
Anniversary: April 10
Child{ren} Name: Emily
Child{ren} Birthday: May 16

Your Miracle Child Name: Emily
Your Child's BD/SN: Pulmonary Atresia/Tetrology of Fallot, Cystic Kidneys & Congenital Scoliosis - deemed a VATER/VACTREL child.
Upcoming Appointment{s}: none for awhile! Smile

Are you:
PG

Sarah Katherine due 6/23/09 Trisomy 18

Helpful Links: www.trisomy18.org
http://www.veptr.com/

I'll have to find more - not on my normal laptop with my links Smile

Joined: 03/16/15
Posts: 53852

Screen Name: anns_angels
Your Name: Andrea
Your Birthday: May 19
DH/SO Name: Todd
DH/SO Birthday: April 6
Anniversary: June 17 2000
Child{ren} Name: Hunter, Jacob, Logan, Tylor and Alexandrea
Child{ren} Birthday: Dec 18 01, April 18 03, May 14 07 and April 5 09

Your Miracle Child Name: Hunter
Your Child's BD/SN: porisis(spelling), asthma, allergies, pvc's(extra heartbeat) and developmental delays.
Upcoming Appointment{s}: heart appt june 11th

Your Miracle Child Name: Jacob
Your Child's BD/SN: ebstines anomaly(heart disorder), mitochondrial myophaty, develomental delay's, cisterna megna(brain), cd's, allergies
Upcoming Appointment{s}: Heart appt June 11 and Mito appt june 23

Your Miracle Child Name: Logan
Your Child's BD/SN: premiee, possiable mitochondrial myophaty, IGF-1(growth hormoan disorder), mild hydrocheplis(spelling) and developmental delays.
Upcoming Appointment{s}: endo oct 22 and mito appt june 23

so far the twin's Tylor and Alexandrea are healthy.. they are just premiee's.. they did fail their first newborn screening but they redid it and i havent heard back from the dr on that.

Are you:

TTC
PG
TOC
WANTING BUT WAITING
DONE!

we are done. i got fixed..

Melissas_crew's picture
Joined: 08/30/10
Posts: 68

Screen Name: Melissamomof4
Your Name: Melissa
Your Birthday: July 1

Child{ren} Name: Zachary, Joshua, Isabelle, Matthew and Allyson
Child{ren} Birthday: 11/28/98, 8/30/01, 10/08/03, 9/10/05, 3/30/09

Your Miracle Child Name: Zachary
Your Child's BD/SN: Noonans syndrome, repaired primary mega ureter, mitral valve prolapse, platelet function disorder
Upcoming Appointment{s}: none

Your Miracle Child Name: Joshua
Your Child's BD/SN: Noonans syndrome, repaired innominate artery compression, Supravalve Aortic stenosis, bicuspid aortic valve, pulmonary stenosis, platelet function disorder
Upcoming Appointment{s}: none

Your Miracle Child Name: Isabelle
Your Child's BD/SN: Noonans syndrome, Bicuspid aortic valve, aortic stenosis, platelet function disorder
Upcoming Appointment{s}: none

Your Miracle Child Name: Matthew
Your Child's BD/SN: Noonans syndrome, pulmonary valve insufficiency, platelet function disorder
Upcoming Appointment{s}: none

Your Miracle Child Name: Allyson
Your Child's BD/SN: Noonans syndrome, Pulmonary Stenosis
Upcoming Appointment{s}: Cardiology July 16, hemotology and urology I need to schedule

Are you:

WANTING BUT WAITING:

Helpful Links: http://en.wikipedia.org/wiki/Noonan_syndrome
http://www.noonansyndrome.org/

scotty620's picture
Joined: 08/24/06
Posts: 288

Your Name: Ryan
Your Birthday: March 17th - St. Patty's Day
DH/SO Name: Steve
DH/SO Birthday: April 24th
Anniversary: August 27
Child{ren} Name: Luca and Carlin
Child{ren} Birthday: Luca 9/12, Carlin 4/23

Your Miracle Child Name: Carlin
Your Child's BD/SN: Congenital Short Femur - expected discrepancy is about 4 inches when he's full grown
Upcoming Appointment{s}: We meet with the orthopedic dr in a couple weeks. And the PT in another 6 weeks. It's really just monitoring at this point until he's about 2 or 3 and then we'll have surgery.

Are you:
TTC
PG
TOC
WANTING BUT WAITING: probably we'll start trying again next summer/fall ...
DONE!

betsy0040's picture
Joined: 03/28/08
Posts: 121

Screen Name: Betsy0040
Your Name: Elizabeth
Your Birthday: 2/10
DH/SO Name: Jamie
DH/SO Birthday: 6/9
Anniversary: 7/1704
Child{ren} Name: Joshua
Child{ren} Birthday: 11/23/2008

Your Miracle Child Name: Joshua
Your Child's BD/SN: MECP2 duplication syndrome, mild myotonic dystrophy, sensory issues, global developmental delays
Upcoming Appointment{s}: pediatric neurology, Oct. 6th.

Are you: No idea at this point. Not TTC.

Helpful Links: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=myotonic-d
Information under Clinical Description, his is mild (55 is his number).