my name is tiffany. i am a mommy to carolyn, who has no gd. my son jonathan was born with a condition called syndactyly. 3 fingers on his left hand were fused together, and two on his right. he has had two surgeries already, and will have more.
Quoting Proud Mommy and Wife[GDS]:
Quoting Tobys Mommy [Lisa]:
I'm Amanda, mother to two wonderful children!
Spencer is 2.5 and has Schizencephaly, he had a stroke while in the womb and because of this was partially paralyzed on his left side, He is
My name is Khrys, & my Son is Khym. There are a frew more details on my About me.
My son is a Pediatric Stroke survivor. He had his stroke during Labour & Delivery, when he was 40weeks 5 days. They don't know what actually caused it (I have a few possible ideas but can't confirm) & said we probably never will, though they are fairly certain it's not genetic.
Our warning sign of the stroke was seizures which for almost 18 months he was taking Phenobarbital for.
He so far has shown only one side effect of the stroke & that was secondary Hydrocephalus, for which they did surgery at 3 weeks old to place a VP shunt. He has never had them actually need to do anything else with his shunt once it was in, other than Image it several times because of "potential" & "future" failing.
There are still many possible problems to come & we may never know the full extent of what "Damage" has been done because he's so far been doing beyond what anyone could ever have even hoped for. His only "Real" problem at the moment is that we can't put weight on him. He has an incredibly high metabolism.
On top of that we do know that there may be a worry for a genetic malformation of any future child's heart & lungs. We've had 2 children in my family in the last few years that have had the exact same problem. & we Mom's are all related to each other at the same "Distance"(we all share a Great-Grandfather). We get to see how much other family history may be waiting to smack our children into oblivion.
There is also family history of Downs, Autism, MS, Muscular Dystrophy, Neonatal Cataracts, infant Brain tumors, seizures, ADD, ADHD, and several other "problems" So "Special Needs" have been a large part of my life. And we're crazy enough to try for another Bio-child & to adopt, with the thought on adoption being probably some sort of special needs.
I'm loving all of these new people i'm meeting!
Quoting [[ MANDI ]] [GDS]:
Quoting [GDS] Listerfiend:
my name is jess...been with my husband mike for 11 years, (married for 3 of those). my son kogon was born in may of 08. LABOR STORY:we were in the middle of a cross country move back to the midwest and our home roots at the time, although like most plans it didn't go by the book. this was my first child and i didn't know what to expect as far as what labor was...p.s. i know now! contractions started at 2am thursday morning (wed night) every 8 mins or so...i went to work the next day - ihad a dr appt on thursday anyway so didn't think much about it...contractions were every 4 - 8 mins....at the dr's appt - i was told i wasn't in labor - wasn't contracting - wasn't dilated - wasn't effaced..."drink water and lay on your side - relax" contractions continued - started to bleed a little bit (normal after a pelvic exam right?) i walked around the apartment, climbed in and out of the bathtub and waited until thursday night 2 am (friday morning) called the hospital and went in....guess what??? not dilated - not effaced...contractions are every 2 - 4 mins with an occasional outlier...i walked for 4 hours - not dilated...time to go home...now i hadn't slept since tuesday night...i begged to have something to sleep with...they gave me a script for ambien and sent me home. PS mike is 1000 miles away and no one other than my dog is at home. i stop at cvs around 6.30a and scare the crap out of everyone there as i'm in a great deal of pain...but i'm not in "labor" i'm in prodromal labor according to the nurses at the hospital. ok go home, take the pill, drink some water, filled the tub yet again, and continued to walk around the apartment yelling at snoopy when she would follow me too closely...i don't remember all that much other than getting to a point where i really had to go to the bathroom....so i went into the bathroom sat down on the toilet - pushed and nothing...(PS at this point i think i have had two ambiens but i'm not all that sure)...so i continued to walk around the apartment again, crying,yelling at snoopy, and then i thought forget it, if i'm going to poop i'm just going to poop in the tub...so i started to squat down into the tub and GUSH...my water breaks and out comes kogon right into my arms...i drag both of us out into my bedroom to grab a baby blanket and wipe him off and rub him to get him to cry - find my cell phone and call 911...paramedics came, door was locked so i went to the door and opened it and handed them bop...they cut the cord and i'm not sure if i suctioned his mouth out or if they did but our brand new medic kit suctioner bulb was used. they called mike and my mom from the ambulance and mike got a flight to maryland that day...i did not know that bop was going to have down syndrome...it was quite a surprise, although what should i expect from one who already surprised me so greatly! we were very fortunate not to have any other major health issues - he did spend 9 days in the nicu due to several issues but nothing that wasn't resolved without any lasting effects.
such a little man, such a big impact on so many people - he completely amazes me...
aly- when did they start a "special needs" section???
Quoting Tobys Mommy [Lisa]:
Hi Ladies! My name is Christen and I don't have a child with special needs but I'm a teacher to 7 students who all have a diagnosis of autism! I love these kiddos and I'm willing to offer any of my knowledge to parents who may need a little! I'm also looking for some insight from parents as you know your child and their diagnosis better than any doctor would!!
My name is Suzie and my daughter Jasmine has Down syndrome!:D
I got pregnant with her in 1993, when I was 18. Her dad and I dated in high school and when I found out I was pregnant, I was way excited! (that relationship took a huge turn for the worse but I'm going to just keep this about her, because that a really loooong story, lol...)
Anyway, I was not a smoker or a drinker, I ate healthy and exercised, and I was young, so the thought of something being wrong with my baby, never even crossed my mind! I got all of the screening tests that they usually do and everything came back negative. They never said anything about a level 2 sono, because of the negative screening results and because I was under 40 years old. (It used to be 40 back then, I think now it's 35...) Anyway, I'm going along with my pregnancy and everything with the baby looks great. No problems, no morning sickness, just a very normal and happy pregnancy. When I was 36 weeks, I had a sono to check the amnio fluid level. They told me it was very low. They put my on a monitor for a few hours and had me come back a couple of days later. When I came back, they said my levels were dangerously low, and they scheduled an induction. She was born at 38 weeks. I didn't find out if she was a boy or girl until she was born. She was the most beautiful thing I had ever seen! She had cherry red pouty lips and rosy cheeks, and she had this beautiful dark hair...Tons of it!
My OB came into my room the next day and said "I thought at first, she may have Down syndrome, Suzie..." "But now that I look at your eyes, I'm just thinking it's probably the way her eyes are shaped. They're very "almondy".....But you and her dad both have such unusual eyes....Anyways, she's gorgeous...Congratulations...See you in 6 weeks..."
That was pretty much it. I thought, "Hmmm, that was weird. Oh well, I'm glad she doesn't, that would suck..."
The next thing I knew, another doctor came in...It was about 3 hours after my OB left. He was an old man, name was Dr. Brookerand he didn't really have an expression on his face, but he seemed kind of rude...:? I had never met him before at all...He said to me, "Ms. Murray, your baby has Down syndrome." I was like :shock: WTF are you talking about? What do you mean? What does that mean she has Down syndrome?? He said, "Well, she's a mongoloid..":shock::shock: "She is mentally retarded....She will never be able to read or write, and she will probably have to live with you for the rest of her life, unless you want to institutionalize her..."
I just stared at him! I was soooo fucking pissed at what he said!
He started to say something else, but my mom told him, "I think you should leave now, before she gets out of her bed.."
He stood up and said, "If you have any questions, ask one of the nurses...Have a good day."
That was it! I knew nothing about Down syndrome, nothing about how it happened, nothing about anything...All I knew was that my child was nothing that I had expected. I tried to remember her face and I thought, "No fucking way does she have Down syndrome! Did they see how beautiful she is? They are the fucking retarded ones!!" I went to the nursery (she was in the NICU for low blood sugar...) I stared at her, and I just started looking at her features....Her hands, her feet, her eyes, her neck....I saw it all...I saw Down syndrome features on my baby girl, that I had never even noticed the day before... The nurse brought her dad in, and I started crying. "They said she has Down syndrome!" "Do you think she has Down syndrome?" "There's no way she has Down syndrome!" My mind was going a million miles an hour!! He looked her over, and said, "Well, look at her eyes..Look at her short neck... IDK, but....Yeah kinda......Yep, I think she does.....She has Down syndrome, Suzie..." I was crying sooo hard.....I mean I was wailing, like a damn sea lion, lol.... I was so embarrassed! Here we were, two really good looking young kids. Everyone thought we would have this gorgeous baby, this perfect beautiful baby, and here she was.... She had Down syndrome. I'm sure this sounds horrible to you mamas, and I feel soooo differently now. But I want to be honest because there may be someone who needs to know that all kinds of emotions will be felt and that it's normal to feel them. It doesn't make you a bad person or a bad mom...
I left that hospital thinking I wanted nothing to do with that baby.....My life was ruined and I was stuck!
For the next 3 months, I begged my mom to take her. I didn't want her! I didn't want to hold her, I didn't want to feed her, I didn't want to touch her! I just wanted her to go away....:( My mom wouldn't take her though...She said "Look, this is your baby...I know she may not be what you expected, but you need to face reality! This child is yours, and you better start trying to figure out how to help her make the best life possible for herself!" "You think you're stuck now, honey....If you don't help her learn how to take care of herself, you'll really be stuck!"
It took me about 6 months to finally feel a little hope.....I started taking her to therapy a couple times a week....It was kind of like a preschhol/daycare place...I would take her in the morning before I went to work and they gave her physical and occupational therapy and then they kept her in their daycare center until I got off work....She went there for almost 4 years and they were really wonderful with her. I believe they helped her a lot and that taking her when she was so young was really a vital part of the success that she now has! She has been"mainstreamed" in her classes since 2nd grade. She has a 4.0 grade average and is always on the honor roll....She is now 14 years old and will be a FRESHMAN this August! She is well spoken and she DOES read! (So haha Dr. Brooker!:roll:) She loves to go bowling, she dances, she fights with her sister, she takes showers all by herself, she shaves her own legs, she sets her own alarm, shemakes her ownmeals (when we don't feel like it, lol...)she sings, she reads to her baby brother, she writes in cursive, sheknows how to use the computer, she loves the Jonas Brothers, lol....She lives a pretty damn normal teenage life!
Anyways, that's my story! She has her own story, but mine was pretty long, sooo...:oops:
ETA: Mine is so much longer than ya'lls because she's 14, lol...
Hi I'm Kirstin.
At the beginning of October my daughter was diagnosed with AML (Acute Melogenous Leukemia) She has since been in remission for nearly 4 months now. Thankfully we caught it really really early and went after it with an aggressive chemo regiment. She still receives maintenance chemo, and hasn't actually grown in about a year.
The type of chemo she was on has about a 3.3% chance of causing damage to the kidneys and pancrease. She is now borderline diabetic and has a high chance of advancing to type 1 diabetes within the next ten years.
Recently her doctor advised that we fill out all the necessary information to and paperwork to place her on the organ donor program, lest she take a turn for the worst.
Should she have a relapse in the next few years we could be facing the need for not only a kidney transplant, but also bone marrow transplant. As of right now the dr's are very doubtful about whether or not her poor kidneys can and would survive another round of chemo.