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  #21  
June 2nd, 2009, 03:28 PM
Regular
Join Date: May 2009
Posts: 82
whoa sorry the pics so huge.
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  #22  
June 12th, 2009, 10:43 AM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
What a gorgeous group of kids!
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Thanks Yvonne (Jaidynsmum) for my beautiful siggy!














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  #23  
June 17th, 2009, 10:07 AM
Member
Join Date: Feb 2009
Posts: 33
My little guy is Miles. He was born with mild to moderate hearing loss. He's been wearing hearing aids since he was 4 months old. He's now 22 months and the language is coming, fast and furious, but his diction is not so good.
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  #24  
July 1st, 2009, 01:27 PM
SherryMomof3's Avatar Regular
Join Date: Jun 2009
Location: NC
Posts: 56
Meet Michael

Michael who is now 8, was born at 24 weeks and spent 5 1/2 months in the NICU. When Michael was born, he had PDA (patent ductus arteriosus) which was treated successfully with Indocin. It was later discovered that he had NEC (necrotizing enterocolitis)and had 2 surgeries for this, one to cut out part of his intestines, and the second to repair it (he had an iliostomy for 2 months). He also had bronchopulmonary displasia which is chronic lung disease characterized by hypoxia, hypercarbia, and oxygen dependence. Michael is legally blind in both eyes due to ROP (Retinopathy of Prematurity) and he has had 2 eye surgeries on each eye. He has no vision at all in his right eye and very little vision in his left eye. At 5 months he had surgery for bilateral hernia repair. He had to have several surgeries for Broviac IV's. He also had to have 5 platelet transfusions and 17 blood transfusions, maybe more but that is all I remember.
After his long NICU stay, he had surgery for Hypospadius and to be circusized on Feb 2002. He had a complication from the circumcision and had to rushed back to the OR.

Right now, his diagnosis that he currently has are:
1.ROP (Retinopathy of Prematurity)
2. He was diagnosed with Sensory Integration
3. He was diagnosed with Cerebral Palsy.
4. He was diagnosed with Failure to Thrive and had several procedures/test done to find a cause. No cause has been found yet.
5. He was allergic to eggs, dogs, peanuts, and beef but he has now outgrown them all.
6. Behavioral Disorder which was helped a year ago with meds
7. Asthma
8. Michael is severely delayed (did not crawl until 2 years old and did not walk until 3 1/2 years old)

He is very tiny too...he is 8 and only weighs 35 pounds. He only weighed 12 pounds at 12 months of age. Michael has had about 8 or 9 doctors at Duke and I also had to stop working because of Michael having all those doctors appts. When I called the doctors office I never had to tell them my name because they knew who I was. I had to go all the time for both Michael and Emily.
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Wife to Lee 3/29/97
Brandon 12/18/95
Michael 9/6/00 http://www.caringbridge.org/nc/michael
Emily 1/9/04 http://www.caringbridge.org/nc/emily


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  #25  
August 31st, 2009, 06:18 PM
Mega Super Mommy
Join Date: Jun 2008
Posts: 3,961
Here is our Claire-bear



The morning of December 13th I woke up and did not feel good at all. I thought that maybe I was about to go into labor because I had been having false labor all week long as well ( I was due on the 27th). I went through the whole day not feeling well and just laying on the couch, I tried going on a walk thinking it would kickstart something, but nothing other than the random ctrx I had been having all week. By 7:00pm I had noticed that I hadn't felt her move all day long. I called into the L&D and they said I could come in to be monitored.
We got to the hospital and they hooked me up and we heard the heartbeat right away-RELIEF! After about 45 minutes there was no movements and they saw that I had a few ctrx where her heartrate dropped each time. They called in my dr. he came and tried to get baby to respond and move. He said that it could be nothing but he had that strong feeling that maybe we should get her out of there.

At 1:55am they pulled out my very white and very limp baby. It was the scariest sight I have ever seen. They didn't know what was wrong so I didn't even get a chance to look at her because they started working on her right away. I kept trying to look back and see what they were doing as DH tried to keep me calm. I remember thinking to myself- She is alive, I just heard her heartbeat, she HAS to be alive-. As each minute passed by I waited and waited to hear the newborn scream, but there was nothing. DH said the pedictrician continued working on her and they all kept looking at the clock and he had this dreaded feeling they were going to call time of death. Finally 15 minutes later we hear a very weak, but audible baby cry. After they got her breathing they whisked her off to continue doing tests to figure out what was wrong. My dr said my placenta was healthy, he didn't see any meconium, or anything out of the ordinary. In 16 years he had never seen anything like this.

As they were stitching me up they came in looking for the umbilical cord because they needed more blood. They had discovered that she had a hemoglobin of 3.6 and in a normal baby it is supposed to be around 14! She was severly anemic somehow. They were amazed that she was alive and that her body wasn't even in shock from the huge loss of blood.
The pedicatrician came in and said that they were going to have to take Claire to the hospital an hour away with the best NICU so she could get blood transfusions as well as all the other treatment she needed. I spent a lot of time thinking to myself and praying. Where was my baby? Why God had this happened? I didn't sleep much that night and I called continually to check up on my baby.

They eventually found out that I had a really rare thing happen called Spontaneous Fetal Maternal Hemmorage. My dr said he had to pull out all his medical books to find out what it was because he had never seen it before. They tell me that it was just a random thing that happened and it was nothing that I did, but it is still hard to tell yourself that you did everything right when something wrong happens to your baby that you have been carrying for 9 months. What happened was, a blood vessel in the placenta had ruptured and all of her blood was going into me. 6% of my blood when they tested me was Claire's blood.

Needless to say after two days Claire started having seizures at the hospital (we now think it was just because she was so severly anemic at birth). It was just another blow with everything else she was struggling with. She was put on phenobarbital for the first 3 months of her life, which made her sleep alot so that her brain could "heal". They said that when a body loses as much blood as she did the blood that is left goes to the brain and heart to protect those, so everything else starts shutting down. It took three weeks to get her eating the amount that a normal newborn eats because her intestines had "gone to sleep" because of the lack of blood and we had to wake them back up. The drs gave us some very grave news as they said that Claire may always be on a feeding tube for her whole life, she may not do much, etc, etc. It was almost too much to take but we had a strong faith that God has a plan for her life and we had so many people praying for her.
She is now the girl that she is because of those prayers. So far, mentally she is a normal 8 month old, physically she is behind (more like a 6 month old), but the dr.s think with time and a lot of work she may catch up. She has a physical therapist who is working with her as well as TONS of drs continually checking up on her. Even though we have a long road ahead of us my question that I asked God, Why did this happen? Is answered everyday when I look at this beautiful miracle that he has given us, and it makes us that much more grateful.
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Thanks Rachel for the awesome siggy!
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  #26  
October 7th, 2009, 10:47 AM
LocoMom's Avatar Crazy is as crazy does
Join Date: Oct 2009
Location: QuackQuack
Posts: 24
There are some beautiful children here!

Meet Amber. (sorry not enough posts for pictures yet)

Amber is an identical twin but she has a genetic birth disorder called "Beckwith-Wiedemann Syndrome". Her twin, Lauren, does not. They are both 2 years old and very active!

Here the is medical definition of Beckwith-Wiedemann Syndrome:

An overgrowth syndrome, whose clinical manifestations typically include macrosomia (large body size), macroglossia (large tongue), organomegaly (enlarged organs), hemihypertroph (overgrowth of one side of the body), neonatal hypoglycemia (low blood sugar in the newborn period), and ear creases and ear pits. Some may exhibit birthmarks over their eyes, commonly known as "angel's kisses" or "stork bites". Patients with this syndrome have an increased risk of embryonal malignancies such as Wilms Tumor (like cancerous growth on the organs), and adrenocortical cancer. This effects about 1 in 15,000 births.

Currently, Amber only has the Macroglossia and the Angel's Kisses. She has to have blood drawn every 6 weeks and ultrasounds every 4 months to check for elevated protein levels and unusual growth.

Should Amber develop tumors it is treated like an agressive cancer. Surgery, chemo, etc. So far so good. No abnormalities detected yet!

I have a frustrating over the lack of information there is on BWS. I mean there's ton of technical information available on the web, but you need a PhD just to figure out the terminology. Also, since it's such a rare (I won't say disease) case, there are no active support groups in our area, so there's no one to talk to in person.

But Amber is a happy child, nonetheless. When she smiles, her entire face just lights up. She has issues with textures so she is a very picjy eater. She will need speech therapy for a long time to learn how to control her tongue so she can correctly pronounce words. Right now Lauren has a limited vocabulary, but Amber has only been able to say "dada" and "mama".

She's starting a homeschool program with Lauren next week where the teacher & therapist will work with both in developing their cognitive abilities and with Amber for speech.
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  #27  
October 12th, 2009, 12:37 PM
Super Mommy
Join Date: Oct 2009
Posts: 663
Just wanted to pop in and say your babies are beautiful! God bless you all!
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  #28  
October 14th, 2009, 02:18 PM
KPKoze's Avatar Kristi
Join Date: Oct 2009
Location: Colorado
Posts: 39
Hi, I'm Kristi and I'm new. My son is Hunter and he was born 5/12/07. Stupid Dr. missed that he hadn't grown in 6 weeks and I'd lost all my fluid (I had a perfect u/s at 32 weeks). He now has Spastic Diplegia Cerebral Palsy because of the periventricular leukomalacia injury to his brain. It was a painful NICU stay when he was born and I now have a true spot in my heart for the NICU.

We do PT, OT, ST, Myofascial release, Functional Electrical Stimulation, Phenol/Botox injections, AFO's and nightly Baclofen. He went through an FTT period and it was related to him silently aspirating so badly so we have done liquid thickening to correct that. He used a walker starting at 14 months and now at 27 months we're transitioning to forearm crutches. Still can't talk very well but he's pairing vowels and consonants now so we're on our way!!

Hope to get to know more people around here and compare some notes some time

I can't post pics from work but I have a picture of the whole family from this summer at SIL's wedding as my profile pic!
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Kristi~ Mom to Ryanne (12/31/05) and Hunter (5/12/07).
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  #29  
October 14th, 2009, 09:52 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Just wanted to say welcome to the new moms and kids here!

I enjoyed reading your stories and I know the road is long ones for all of us, but some of our kids here have a great outlook, that makes me happy for all of you.
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  #30  
December 22nd, 2009, 10:04 AM
Super Mommy
Join Date: Apr 2008
Location: O'Fallon, IL
Posts: 839
Send a message via AIM to airfobrat Send a message via MSN to airfobrat Send a message via Yahoo to airfobrat
just dropping in to let ya'll know your kids are all sooooo beautiful!
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Thank you .:Shortcake:. for the awesome siggy!!

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  #31  
January 30th, 2010, 05:04 PM
Platinum Supermommy
Join Date: Oct 2005
Posts: 41,401
Send a message via Yahoo to nvr.4.gtn
Hi, reading some of these stories breaks my heart and yet makes me smile. Hurts for these children to go thorugh so much yet smile because you moms are so strong!!!!!!


I have 2 girls, my oldest is a perfectly crazy obnoxious 4 year old! My little one Avery, is 6 months old and was diognosed at 4 months with bilateral cataracts and nystagmes. Bilateral just means both eyes, nystagmus is a disease that causes her eyes to flutter from side to side and up and down. We hope that it will get better and not be noticable. There is no cure or fix for it.
When she was diognosed she was completly bline excpet some light. She had surgery the following week, one on Monday and the second on Friday.

She now wears contacts every day, and yes I take them and out and put them in daily. lol She can see about 14 inches according to the doctor. She can see shadowing afew feet though. we pray that her eyue sight continues to improve. This may be as good as it gets, but she may have normal vision as well. we just don't know.

She also has modeate reflux and is on prevacid twice a day.

She is currently in ECI (crap deal there!) and will be getting help with the school district soon.
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Made by Trish!!!! <3<3<3

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  #32  
January 31st, 2010, 08:54 AM
EquestrianMama's Avatar Mega Super Mommy
Join Date: Jan 2010
Location: Seaside, CA
Posts: 1,097
My daughter isn't born yet, but there's a good chance (50%) that she will have neurofibromatosis type 1 like I do. You can read about NF here: Neurofibromatosis, Inc.

I don't have any major problems, nor does anyone in my family. The main things it's caused me are that I have lots of cafe au lait spots all over me, I've had several benign tumors removed, I have scoliosis and a slightly enlarged head, and I'm short. NF can cause more problems than that, but my family has been very fortunate. Chances are very good that Aline won't have any major problems as well. We had a test run so that I could be involved in an NIH study with NF and pregnancy, but I told the doctors I do not want to know the results. Obviously Aline having NF wouldn't change anything, so there's no point in me worrying needlessly about the affects of NF.

Anyhow, I figure I'll probably spend some time over here if she does have NF, so I thought I'd introduce myself and tell you all a little about the condition I have. Are there any other parents with NF or kids with NF out there?
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Aline Morrigan, born July 16th, 2010. 7lb3oz and 20 inches long





Thank you Quantum_leap for my AMAZING siggy!
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  #33  
March 3rd, 2010, 05:30 PM
wilkette's Avatar Member
Join Date: Jul 2009
Location: Clarksville, TN
Posts: 49
Hi all! My son Asher was born at 28 weeks and 6 days. He spent four months in the NICU at Vandy, and he was on a vent for over half of that time. He was born on March 13, 2008 - due date was May 30 - and he finally came home on July 20!

His premature birth was a mystery since I had not had any complications with my pregnancy. Around the time he turned one, we found out that he has a genetic condition called CFC (cardiofaciocutaneous syndrome). It's very rare - it's estimated that there are less than 300 people in the world with CFC. Asher is quite delayed (at almost 2 he has yet to crawl or talk), but he's such a happy guy.

I would post pics but I'm too new.
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//Cayla//
Wife to Chad (est. 6/4/06) and Mom to Asher (est. 3/13/08)

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  #34  
March 3rd, 2010, 09:33 PM
wilkette's Avatar Member
Join Date: Jul 2009
Location: Clarksville, TN
Posts: 49
I think maybe I can post pics now...

Then:



Now:

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//Cayla//
Wife to Chad (est. 6/4/06) and Mom to Asher (est. 3/13/08)

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  #35  
July 25th, 2010, 02:20 PM
SandKmommy's Avatar Seamus and Kieran's Mommy
Join Date: Sep 2005
Location: North Idaho
Posts: 30,100
This is my Seamus, he just turned 4



Seamus was born with Torticollis, which resulted in Plagiocephally. He also has Macrocephally. Seamus started OT at 2mo old for his Tort and at that point we realized that he was way behind developmentally. Seamus started PT as well around 6mo. The OT and PT went till he was 15.5mo when we moved out of state, and the state we moved to refused him services saying he was fine. When he was 20mo old we moved back home and his pedi wasn't too happy about the lack of services in the other state. Seamus now goes to consoling, PSR, Speech Therapy, and is being evaled by a sensory issue OT. We still haven't come to an official diagnosis each professional he sees has a different one and it all hasn't been put together to see if it is under 1 specific thing or not. His pedi thinks possible high functioning autism, but recently after talking with his Speech Therapist and the OT it sounds like he may have Sensory Processing Disorder.
Seamus also has a "non-traditional" lazy eye in his left eye.
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  #36  
September 17th, 2010, 09:26 PM
Just Jen's Avatar Mega Super Mommy
Join Date: Feb 2010
Posts: 0


This is Ella. She was born 14 weeks early, and as a result she was on a ventilator for 59 days. She spent 16 weeks in the NICU at Dartmouth, and is now home on oxygen therapy. The prognosis is pretty good, so long as we can make it through this next cold, flu and RSV season. Pneumonia nearly killed her this past spring.

She has chronic lung disease and has scar tissue across 25-30% of her lung tissue. She may grow out of it, or she may never heal. She might be 100% healed, or she might be on oxygen until she is 4. And due to the frequency of her desaturations, it's very likely that she will end up with some degree of cerebral palsy.

She is about 7 months now (16 weeks corrected) and her personality is really starting to show itself. She is happy, and a chatterbox, as long as she doesn't get too tired. She doesn't cry very much bc it's tough for her to sustain. She gets her point across and is just mad afterward.
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  #37  
October 31st, 2010, 03:00 PM
dotcomkari's Avatar Bianca, Kai & Asia's mom
Join Date: Jan 2009
Location: Wisconsin
Posts: 1,352
Send a message via AIM to dotcomkari Send a message via MSN to dotcomkari


This is Kai:
Kai was has a number of things... and it seems like the list is always growing with his age.

Kai at a young age was diagnosised with a disorder of his pancerus. He can not digest food like you or me. He has weight gain issues due to this and can not eat certian foods without getting really bad stomach issues. As gross as it sounds he has poos that look like black tar and are really stinky. He drinks pediasure to keep his weight up and due to the fact he can not have too much milk.

Kai was diagnosised at age two with AUTISM and Sensory Processing Disorder.

Shortly after, Kai was diagnosed with Childhood apraxia of speech . (CAS)
Due to this Kai has a very limited speech (about the level of a 18 month old ).
And in the near future may be getting a communication device to help him better communicate with the world.

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THANK YOU Claire for Siggy! WE LOVE IT!

Kari, Proud wife to Raymond (8.16.03) proud mommy to: Olivia Katherine ( born still 3.5.00), Bianca (12.23.03) , Kai (4.28.06) and Asia (7.14.08)

Proud Member of the :
Children With Special Needs, 2008 July Playroom, ASD Board, Stillborn Baby Board
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  #38  
November 8th, 2010, 03:57 PM
Veteran
Join Date: Nov 2010
Location: Arkansas
Posts: 117
I am new..think I have been here before, but I am not sure..had to start all over if so..anywho

I am Joede, my ODD Coree has Down Syndrome..she is 17yo. She graduates from high school this year and I am every so grateful..I have had enough of the public school system.
I will post a pic as soon as I can! Nice to be here.
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  #39  
January 5th, 2011, 03:56 PM
Super Mommy
Join Date: Jan 2011
Location: Southern California
Posts: 799
This is my handsome 4 year old son Thomas (we call him Master TJ).
Thomas was born 2 days late on 12/19/2006 after a failure to progress via an emergency C-section.
He has been diagnosed with moderate cerebral palsy, moderate developmental delay (he's ranging around 6-12 months), GERD (had a Nissen fundoplication and G-tube placement @ 3 weeks old)

He receives PT & OT, attends a special needs preschool program through the county. He also has a Quickie Zippie wheelchair, a Rifton stander, a Rifton bath chair, and a feeding chair as well. He will be getting his AFO's in 2 weeks, so that we can start working with the gait trainer.
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  #40  
February 21st, 2011, 02:59 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150


This is Carrie. She is a mess She's 3.5 and special needs. Long story short we're on our 4th diagnosis (all others were one at a time deemed misdiagnoses). They say she's got slow brain waves. Hers right now are the rate that her little sisters are. There is no way to tell how far behind she'll be but they say she'll definitely always be behind. She could be a couple years behind forever, or 2/3 her age behind, or there is even a chance she won't progress much further than she is. a few months ago they told us she'd likely never walk or talk, but 4 months later she's WALKING! She's my beautiful little miracle. They have no idea why she's affected by this (it's typically associated with FAS or CP, which extensive testing has ruled out both).

She's 3.5 and just learned to walk, she can only say "mama", she has mild sensory problems and is behind in both fine and gross motor skills. She's a happy and sweet girl and I'm lucky to have her


(That's a strawberry hemangioma on her arm, she's also got one on her head, basically it's just a birthmark)
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"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."

Last edited by C&K'sMama; February 22nd, 2011 at 06:23 AM.
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