Introduce Yourself!

Parent's with Special Needs Children or Special needs themselves!

My name is Aly, and I have a toddler with a Genetic Disorder called McKusick Kaufman Syndrome.
It is a rare syndrome that only occurs in less than 1% of births, as well as only 90 people have ever been documented to have this disorder. [My daughter makes 91!]

At 31 weeks gestation they found a mass near her bladder, which they assumed was a Cyst and told us that it was common for little girls to get them since the babies have to deal with their hormones plus their mothers hormones. Two weeks later they brought us in to check on the mass and it had grown. Two weeks later they measured it again, as well as let us watch her on a 3-D machine. They actually let us watch her for awhile, it wasn't odd to us, just nice that they did it, it didn't make sense until later. At 37 and 4/7 weeks, we went in for another ultrasound and the mass had gotten as big as a softball. My doctor told me; "I do not like this, we need to get baby out." I of course refused because I didn't think she'd be ready. He talked me into getting a amnio to check her lungs, and if they were ready he was going to take her by c-section. Not wanting to put pressure on the mass in the ultrasound. I went in that afternoon, he told me to go have lunch, talk about it with Nick, and then come in for the amnio. But something in my gut DID NOT feel right, I refused to eat, I just stared at the wall. I went in at 1 in the afternoon, he was supposed to be there at 3 to do the amino. I was put on the monitors, at 3:30 I started having contractions. At 4:30 he came in and did the amino and when pulling the fluid out he saw Meconium. He pulled the needle out and said; "Baby has to come out now!" She was born VIA Emergency c-section due to fetal distress.

I saw her twice in the Operating Room.
Twice before she was life flighted at 12 hours old.

Then three days later after I was released from the hospital.

She under went an exploratory surgery at 24 hours old to find out what the mass was.

During the surgery they noticed that her cervix closed up instead of finishing and attaching itself. So the mass was her uterus enlarged by conception/growing fluids that she was unable to drain.

For three weeks she had a drain that ran from her uterus out to a bag.
Around three weeks they decided she was able to drain on her own and removed the drain.

Two weeks later we rushed her back to the hospital three hours away where she was admitted and sent directly into surgery because he uterus was swollen once again and her incision had burst open.


This time her urologist went in with her pediatric surgeon and together they decided to cut open her bladder and her uterus and sew them together, as well as give her stomas.
Stomas are openings that she can leak from. They pull skin from the organ to the outside and secure it.


Since then we've only had one kidney infection, and she's been doing great!

Within the next 6 months she will under go a few more surgeries to connect her cervix to the rest of her!


She also has two extra digits [which will be removed this year, they serve no purpose and do not move], and her second and third toes on each foot are webbed, but you can barely see that. You'd have to be staring directly at them for a long time!

Here is a list of disorders, it has the contacts to parents who might be dealing with the same issues!

Check it out for support!

http://forum.baby-gaga.com/about626380.html

My name is Jennifer. My son Eric who is 9 has ADHD controlled by meds. I wish it was something that could be controlled without the help of meds, but sadly he was kicked out of a private school because they couldnt "handle him" and was almost kicked out of another school until I had to go 1/2 day with him to help keep him calm. Ive had issues with every single teacher he's ever had because of the adhd. Personally, I wouldnt change a single thing about him because he is super smart and I think his adhd helps define him and his personality. If a school feels like he is too much for them, well, then they are the ones missing out.

i'm Lacey, i have an 11 month old daughter who has a bilateral cleft lip and palate.
http://forum.baby-gaga.com/about568112.html

that is my story.

at first i thought this thread said "induce yourself"  

I had a sister who was born with hydrp cephalus and cebral palsy- She held on for 4 years and passed away when I was 6. I watched my mom go through doctors visits, shunt infections and ER visits.

Back when she was still alive.. it was the early 80's and people werent as receptive to special needs as they are now. I remember when a little girl came up to talk to me while I was standing next to my sister in her special chair and the mother ran up and yank the girl away and told her to get away from us.. Like we were contagious  

I'm so thankful for the advancements of modern medicine.. but i really wish there was more that could have been done for her

Quoting Paul Smenis:“ at first i thought this thread said "induce yourself"   I had a sister who was born with hydrp ... [snip!] ... I'm so thankful for the advancements of modern medicine.. but i really wish there was more that could have been done for her”

I know a couple of moms whos children have Cystic Fibrosis, and they get treated like that as well.  

I'm sorry about your sister.
I'm so glad for the advancements as well, I wish it could of happened sooner.

Quoting [GDS] Listerfiend:“ I know a couple of moms whos children have Cystic Fibrosis, and they get treated like that as well. ... [snip!] ... as well.   I'm sorry about your sister. I'm so glad for the advancements as well, I wish it could of happened sooner.”

My close cousin's son has Cystic Fibrosis- They are always in the hospital for the poor guy.. luckily, they finally got the vest approved by their insurance.

My name is Sam. I have a 21 month old named Lincoln who has Down Syndrome. We did all the testing whenI was pregnant with him (such a waste of time IMO) and everything came back normal.

When he was born the nurse ran up and told us they suspected he had DS before we even got the chance to meet him. Our hospital stay was very stressful and full of horrible NICU nurses (but our amazing mommy and me nurses took care of all the problems with the bed side manners of said NICU nurses).

We had a week to digest the news before we got the results back from his karotype, but that didn't help us deal with the news any better. After a day of snuggling and crying we realized that it doesn't matter what challenges he will have, his life will still be amazing.

He is progressing well, although he isn't very interested in learning to walk or stand, he would rather crawl everywhere. haha His therapists are very impressed with his cognitive development, and aren't too concerned with the fact that he isn't wanting to walk yet.

Just an FYI, if anyone is interested, tomorrow

APRIL 6TH ON DISCOVERY HEALTH 8PM

Unlocking Autism


idk if its TLC or Discovery Health?

Hi! My name is Amanda. I have 4 children. My oldest is 15 and has ADHD, my 13 yr old has ADD, my 3rd kiddo is GD free (to borrow a phrase from another GD mommy   ) and then there is my Kelly. She is 19 months old and has Down syndrome.

When Kelly was born she was born really sick. She had persistant pulmonary hypertension (her lungs wouldn't open up) and she also had cardiomyopathy with an enlarged septum in her heart. They also told us then of the possibility that she may have Ds. I personally think they were pretty sure, but just didn't want to add more of a burden on to us since we were already worried about wether or not she was going to live.

She had to be intubated for almost 2 weeks and then c-papped and then on a nasal canula. She was born with moderate to severe hypotonia (low muscle tone) and it took a total of 6 weeks to spring her from the NICU. She did get some scarring on her lungs from being intubated for so long, so we still have to watch out for that, but the cardiomyopathy and PPH have long cleard up.

Today she is a thriving toddler. She recently started walking about 2.5 months ago.
And sheis now learning to climb up on things... the sofa, her toys, the recliner and anything else she thinks needs to have her cute butt up on.

We have been going through some feeding issues lately. I think part of it is because the child only has 7 teeth and partially because she is just being a typical picky toddler. I also think we may have a texture issue, but that is still to be determined.

Our darling Kelly at Disneyland

Kelly being "soooo big"


Snack time, anyone?

Hi my name is Desiree. I have 3 kids...ages 3,2,and 10 months. My 10 month old Natalia has a disease called Galactosemia,her body doesntproducecertain enzymes to break down galactose.So instead of her body breaking it down like normal people it just builds up as toxins in her body.We found out when she was 2 weeks old.

My name is KC I have a son who is almost five. He is a stroke survivor-doctors say it happened the 7-8 month inutero. My-his story is posted in my about me. He is a miracle-just like any other kid born out there but has been through a lot. I am available to answer questions if you have any and want to hear how great yor kids are.
I am waiting for another pregnancy (after suffering two MC) to see if there is a clotting disorder that is being brought on by pregnancy. So it's a wait and see game I guess.

Quoting [GDS] Listerfiend:“ Just an FYI, if anyone is interested, tomorrow APRIL 6TH ON DISCOVERY HEALTH 8PM Unlocking Autism idk if its TLC or Discovery Health?”

TLC!!! i love you Aly!

Hi! I am Chasity! Mommy of 3!

Kenneth is 7 and has Autism, Andrew is 4 and has suffered seizures and Alyssa is 18 months she has chronic asthma and diabetes

Well that was a mouth full!

Hi Iam Brooke Iam a wife to a wonderful man (Lonnie) Our first born Lonnie the third was born in 04 he does show a few signs of autism but not severe enough for any of his doctors to agree with us but as his parents we are sure that something is there my husband says that we should go no farther in searching out doctors and just let hime be since he doesn't throw tantrums or anything harmful to his brothers but as his mother I have concerns , our second born is Dylan born in 05 was born with hormone issues he was on medication for the first half of his life he finally was able to keep his levels stable on his on with out meds he needs to has his hormones checked every few years to make sure ealry puberty doesn't set in .Our 3rd born Son is Preston he was born in 08 he was born with a GD called ulnar aplasia with sydactyly he has only a thumb and 2 fingers on his left hand his fingers were webbed together when he was born but as of march 2nd he now has 2 moveable fingers! My husband and kids are my whole life and nothing comes before them Iam so excited for this fourm I think its going to really help a lot of ladies not feel so alone! Oh btw I'm a rambler lol nice to meet anyone new and to my already gds gals luv ya's

Hi, my name is Lisa, and im an alcoholic!  

kidding.

My son HAS CF- which i saw you girls mention above.

He was born with a meconium ileus that happens in about 10% of babies born with CF. Of course, anything that is in our favor percentage wise- we always wind up going against those odds! LOL - 25% chance of CF- got it... 10% chance of meconium ileus- got it. 25% chance of O+ blood type having 2 A+ parents- got it (not that its a bad thing)

LOL anyway- a meconium ileus is a blockage caused by hardening of the meconium in the instestines- most of the time, requiring surgery- which my sons did. IF this is not caught, it could cause death- and they didnt catch it unitl my son was almost 2 days old after i had been concerned that he didnt eat and vomited anything he DID eat and didnt poop- they flew him 2 hrs away and we went to visit him 23 out of the 28 days he was in that hospital.

Anyway- we are finding out more about the vest, because most of the time they dont approve it before 1 yr old- toby will be a year next month. he has a special diet, requires enzymes prior to any meal or whatever would be needed for caloric intake and vitamin intake. he also has to do a nebulizer 3-4x a day for the CF in his lungs and after that, we have to do chest physical therapy (which the vest would replace us manually doing it)- and right now, they found staph in his throat so we have to add on 2 add'l nebulizer treatments of an antibiotic.

Like MOST mothers with special needs children, as hard as it is to care for our children, we would NOT replace them for the world! my son is the happiest, easiest (well most of the time LOL) baby to handle. he is quite independent in play time and doesnt cry often. he is also a cute little bugger and constantly smiling and giggling at me. i couldnt ask for a better baby!

Quoting Brooke-SAHM2BOYS(GDS):“ Hi Iam Brooke Iam a wife to a wonderful man (Lonnie) Our first born Lonnie the third was born in 04 he ... [snip!] ... help a lot of ladies not feel so alone! Oh btw I'm a rambler lol nice to meet anyone new and to my already gds gals luv ya's”

you? a rambler, no way   We love you to!