How do I create a posting? I cannot find the create option? Just to introduce myself, I am a mom of twin boys born at 24 weeks. My son Noah just came off oxygen after two years. He is doing remarkably well and keeping up with his adjusted milestones (aside from his speech being a bit delayed). My son Jonah suffered a Grade 4 bleed shortly after birth and now has Cerebral Palsy, CVI (cortical blindness) and has a VP shunt. Their needs are extremely varied which definitely causes some challenges. I am looking forward to making new friendships on this blog site.

Hello I am a Mom of three wonderful children. Set of twins that are 7 and Brayden who is 5. He was born with hypo plastic kidney's which means his kidneys never developed. We had to give dialysis at home for the first three years of his life. It was very challenging my husband and I were the only ones trained to give him the dialysis so therefore was no down time for us. We couldn't go anywhere after about 7 pm at night at that time Brayden was hooked up to his machine and cycled for 12 hours. He slept through most of all of it, which it good and bad. The bad part being he didn't eat through the night, nor did he eat very good at all. It was a struggle to get him to eat. I never dreamed that kidney's played such a big role in the development and growth of a child. It was amazing to see the changes in Brayden once he received his transplant. When he was three years old we got the call to come to the hospital. That was March 2007. He was three years old and weighted 19 pounds. Oh, he was the bravest boy I know, and still is. He now at 5 years old is doing great and weighs in at 70 pounds. I know you are saying wow.. You know for three years he didn't eat anything and now we have to hide and lock things up to keep him in check. He loves water he says it makes his kidney float.. He is very aware of what has happened to him and is very cautious. There are a lot of things that he can't do like playing in dirt and sand, rocks. He can't play contact sports of any kind. That doesn't seem to bother him at all. Of course sometimes we cheat and let him play in the sand at the beach, but we can't keep him in a bubble the rest of his life.
He will be on anti rejection medications the rest of his life. His immune system is suppressed so therefore when he gets sick it usually requires a hospital stay. Which is very stressful for the whole family.

The twins are very much aware of what is going on and they baby him just as much as Dad and I.

My husband has been very supportive and great through the whole process. He is a great Dad and husband. I don't know what I would have done without him a lot of times. I know that sickness and health problems as well as financial issues can take a toll on a marriage, but hand in there it is worth it. My Husband and I have done a lot of struggling, but you know I would have not changed anything it has made us better people and we have a better understanding of what it takes to keep on going.

Hi everyone,

New to this posting thing, but trying to connect with other moms in the same boat. I have a daughter who suffered a TBI and has CVI, global developmental delays and epilepsy. Never imagined that I would be in this position, but I love my daughter dearly and learn from her daily. She is such a blessing. Just want to connect with other moms who walk the same walk. It is not an easy journey, so I appreciate everyone wno tries to help and educate those who come from behind.

I am a single mom to 2 girls, ages 11 and 17. My 11 year old was born at 32 weeks and has multiple disabilities including blindness. She has multiple issues that affect her development and behavior, but no one has ever been able to diagnose.

I adopted her at age 10 months. She rolled over at 10 months, sat at 12 months, walked at 2.5 years. She was echolalic until age 6 when she began talking in complete paragraphs. She later told me she did not talk because she did not know all the words. I guess once she knew all the words she could start. A lot of her development is like this. She can't do something forever, and then all of a sudden she can do it very well! Her teachers and I have a hard time getting a handle on what she can or cannot do, and what she is capable of doing. Trying to figure out the future... well, we are not sure we can!

Raising this child has been one of the most challenging and most rewarding things I have done in my life. She brings an incredible amount of joy to my life. I cannot imagine life without her.

At this point my goal is giving her as many skills as possible in the hopes that one day she will be an independent adult. It could maybe go either way, but I am giving it my very best shot so that she can be all that she can be!

My daughter was 2 going on 3 years of age when my son was born 9 weeks early. We told her the baby wouldn't come till after her birthday in March, my son wasn't due till middle of April 2004, but he came early on 14th February 2004 - my valentine baby. Daughter took a dislike to him right away even when he got given the last rites, no one was interested only my mum and dad, according to my husband's side of the family he wasn't "normal" poor thing. it was and still is so wrong my son hasn't done any harm he didn't ask to be disabled, he's my son and that's the way he is. He was given the last rites my husband and I were the only ones there, my mum and dad were babysitting our daughter but no one came or rang. My daughter has grown up with my son being in and out of hospital for one thing and another besides his disability, but she hates him, wishes he'd never been born, saying he was a terrible mistake (she's only 8 years of age) she has had to grow up fast as I spent a lot of time in hospital after I had my son through no fault of my own, but telling a 2 going on 3 year old child this and husband being landed in this situation didn't help, he spoilt her rotten, bought her a pet rabbit to compensate for her brother, let her get away with murder literally now, I am suffering the consequences literally all the time. My daughter went to siblings were I thought they would talk about her anger and feelings, no they just let them play, maybe they were frightened of the outcome, so stopped her going, it didn't make any difference whatsoever, but since of her own she applied by herself to the scouts girls go now where we live, she still has her moments, outburts, and attacks on me her mum when dad is not around, and threats even though carried out she takes with a pinch of salt. She does feel abondended, but I couldn't help that but I don't think she will ever forgiver me, we tried to make her life normal, while my son was in hospital, still taking her to nursery, and not staying @ the hospital, but she hates me. I remember when my husband brought her into the hospital and it was time to go, she begged me to let her stay, but I couldn't I was torn in 2 ways, one for my daughter who I loved and cherished still forever, and the other for my newborn son, who was born 9 weeks early weighing 3lb in weight. talk about a tough decision. I defintely think it did have a lasting impression on her, as she has a terrible tantrum and lashes out all the time, mainly at me and sometimes at my son. My health is suffering now, it is called the son syndrome and it will always be there as long as we have them to look after. xxx

hi
i am a mum to a 8 month old daughter who has just been diagonised with williams snydrome. she is my first at 21 years old.
was wondering if any other parents have children wiv this.

hi there im 27 and mum to kaya
kaya was born at 25 weeks gestation weighing 1lb 9oz
she had 2 brain hemmorages at day 3 ( one grade 4, 1 grade 3 ) she also developed NEC, PDA and BPD she was in the nicu for 15 weeks and was sent home as they said she was too big now and needed to be home. she subsequently collapsed and was rushed back to a childrens hospital. i was told her lungs were in a very bad way and she wouldnt make it. i finally got her back after 10 months.
she failed to meet milestones but no one was telling me anything.
shes now 4 and is diagnosed with diplegic cerebral palsy, autism, severe learning disabilitys, reflux, heart and lung disease and if fed via peg tube
she goes to a PMLD school but is doing better than expected ( well for a child i was told wouldnt live past 2 and wouldnt sit, walk or talk )

I live in Corndale NSW Australia. My daughter Laura middle child suffered a stroke due to antibodies i crossed over while in Utero. Its called Neonatal Alloimmune Thrombocytopenia. It was noticable when she was 5 days old she was bleeding and a platelet count came back at 7. 17 Hours later she finally got a blood transfusion. She has a bleed in the Occipital lobe. Has been diagnoised with Porencephaly, Septo Optic dysplasia, transsynaptic nerve degeneration, global delay and epilepsy. She has severe learning and memory problems and behavioural issues that change like the wind. I hate people telling me she is fine and will be fine. Because she is not fine and they cant guanantee that. I would rather people say....I hope she will be okay. My partner and i have gone through hell, sleep deprivation, constant crying and screaming... hullucinations. I feel like my personality has changed, i used to be a quiet person now i'm advocate central and boy do i get the shits easily! I have no tolerence for doctors that dont listen and i'm sick of confident cocky contradicting doctors. I figure that my partner and i have gone through alot and my daughter is much better on the new meds. I figure if we can survive that we can survive anything. My partners mum passed away she is great, his dad is not a family guy but he does care and love the kids. my partners Aunt is a real BITCH... I took her to Sydney and visited her and she said there's nothing wrong with my little girl and that maybe the problem was in my head and that i just wanted there to be something wrong with her.
My family is really dysfunctional and i only speak with my brother who lives in NZ. My parents split when i was 3.
My daughter can ask you for ice cream, but she doesnt know how old she is, she cant sing twinkle little star, count or do anything like that. She is 5 1/2.

Hi everyone, I lve on the Isle of Wight England along with my lovely hubby Terry our 17 year old daughter Kerry and our son James who is 14.
James has Autistic spectrum disorder, systemic onset juvenile idiopathic arthritis, hypoxic brain injury due to 4 cardiac arrests in July 06, this has resulted in left sided weakness and corticle visual impairment.
We were told when he had 1 cardiac arrest if he had another he wouldn't survive, so just toprove everyone wrong he went ahead and had a further 3! We were told he wouldn't ever wake up and that we had to turn off his life support, I am so greatful we didn't listenas 3 weeks later he woke up, he was unable to do anything for himself like hold his head up or talk but he learnt to do it all over again in just a year.
He spent 3 months in hospital and a further 7 months in rehab, he came home in May 2007 where h learnt to walk again.
We are so very proud of him, unfortunately his systemic diseas is flaring up again and he is having to change his drugs, we have been told he is running out of time with drug therapy and we are reaching the end of the road, there is not a lot else Drs can do for him but he never lets it get him down, alwayshas a ready smile on his face and makes us all laugh every single day.
I am so very proud to be his mum.

Hi I am a mother of 5 year old twins. I had them at 28 weeks, my daughter weighed 1 lb 2 0z and my son 2 lb 9 oz. My son had a pulmonary hemmorage when he was three days old they said he had a 30% chance to live. He made it through but as a result he had a grade 4 brain hemmorage. He had hydrocypholus and had to get a VP shunt at about a month old. He started having seizures also. He was in the NICU from Nov. 19th to Feb. 5th. My daughter had the lung problems she was on the ventilator and didn't make it to two pounds until she was about three months old. She was in the NICU from Nov.19 to March 24th. It was so hard to have one child home and not the other, but we got through it. They both had come home on monitors and oxygen. We knew that there was a possibity that my son could have CP but it wasn't actually diagnosed until several months later. It was devasting news, but we were prepared. They have both been getting therapy since they came home. It feels like lives are consumed with doctors and hospitals. It is really hard but we try to make the best of it. My daughter does not have as much problems as my son but she was diagnosed with asthma and adhd. Anytime she gets sick it is really bad with her asthma we have been in the hospital several times with her. My husband is very supporitve, it is hard for him sometimes because men always hold all their feelings in. But he is a great support to me. His family is not very helpful at all. His mother will say she will watch my daughter but not my son because she is scared of him. This is very hurtful because I know my son knows what is going on and I am sure is hurt by it. I have lots of support from my family though. They have been great to us. I hope that I can find other moms to talk to. I have friends and family but it is not the same as having somebody who is going through the same thing as me.

hi mel thanks for getting bk my email is kayleigh3388@yahoo.co.uk if you wanna email the have a chat

Hello! I am the mom of 3 kids: a 15 yr old boy, 12 yr old girl and an almost 10 yr old boy named Andrew. He was born with half a heart; its called Hypoplastic Right Heart Syndrome. He is missing his pulmonary valve, his tricuspid valve, has an atrial septal defect and his right ventricle is hypoplastic (meaning it didn't develop). He has had 3 heart surgeries, stroke after his last surgery, numerous caths, 2 hand surgeries to lengthen tendons in his left hand, 1 leg surgery in both legs to lengthen his hamstring and has recently had a Vagal Nerve Stimulator surgery to help with seizures. His seizures didn't start until 4 years after his stroke. We are currently just waiting to see if the VNS will work for him as it seems that meds aren't. His seizures are only focal seizures (eyes and head to the left) but when he has longer ones (1 - 2 minutes), he is wiped out and needs to sleep. He misses school alot but does have an IEP. He has learning disabilities but has the biggest smile and is very loving. Just looking for others that may be in the same boat!

Hi i have a 5 year old son with GDD Hypotonia(low muscle tone. Carl was diagnosed at 7 months old but we noticed it right from birth. He was like a rag doll when he was born. Didn't have very good sucking & was switched to 4 different formula's before finding out that Nutramigen was the right one. He don't have much communication. He didn't start to walk till he was 3 years old. My son also can eat 24 hours a day non stop. I have to hide food and watch him around food. Carl also chew's on his finger's all the time. Mostly the pinkie finger. We have seen a Neurologist & Genetics since he was 1 year. So far every test has come back normal. He has had 6 MRI's and they have also came back normal. They also tested him for Prader-Willi syndrome 5 times and he don't have that either. Now they want to test him for Lesh-Nyham Syndrome (Cause of the Bitting on the fingers). But i don't think he has that either. Lesh-Nyham Syndrome has to do with children that pretty much Mutilate them selves and my son only chews his fingers. My family does try to help but they don't understand. My sister has a son that has PDD-NOS. So she understands what i am going trough. My husband don't understand what is wrong with Carl so he get frustrated easily. My parents are understanding. My husbands mom & Grandmother are understanding too but they want to know when Carl is gonna start talking and i don't know what to tell them. I do get frustrated cause i also have another child who i had on Feb 1, 2010 and she don't have any signs of having GDD. I am glad for that but i still worry that it could creep up.