re: Introduce Yourself!
posted 5th Oct '11
hello my name is jessica and I have a special needs child since he was 5 months old. He had infantile spasms. then came developmetal delayed. he is three years old now. He is baced up on his mile stones. he can't walk on his own, he can't sit on his own, he can't talk well except say momma. He has the main issues ar th hypotonia, microcephaly, abducted thumbs, hypertrophic, small great toenails, now those are what his first dr is looking at. but he has morethings that to look at. he has the reflux. So he had surgery and received a gtube which he has the button, and the nissen. He had the undescended testicles, which they just operated on about three weeks ago. they had to remove one and pulled down the other. I took him off of his meds becuase it made him sleep so muc. and found out that the meds he was on gave him more seizures. But I have done my research and I came up with the kleefstra syndrome or the angelman syndrome. He has all the features of the both of them. I emailed the dr and he said that he does have some of the features of having the angelman syndrome but not all of it so he doesn't have it. Well to me he ahs one of them. I am on two groups on facebook of them both. they are very helpful. But it was also my pregnancy was very different from my other two. I had too much amniotic fluid and he really never moved alot in my stomach. I have a blog about my son too if anyone is interested in reading it.quote
posted 16th Oct '11
Hi everyone! I have a 4 year old daughter with Cerebral Palsy. She can't walk or talk but that doesn't mean I have to give up hope. She's currently doing hippotherapy twice a week and she's loving it!! She's in a integrated classroom and that was the best choice we've ever made! It's amazing how the kids are interested in her and are willing to play with her. She has a device that helps her communicate with the kids. I started teaching her sign language when she was 6 months so she uses that daily. Def helps with the frustration. We decided it was time for her to have a sibling since she may need someone for care for her when she's older. I don't know how some of you have felt about having a kid with special kids and having another?? But I've been scared and nervous. I can honestly say I haven't been too excited about it. Tomorrow we find out the sex and I'm looking forward to it Thanks for creating this forum!! I have learned so much from parents thru facebook bout therapies and just advise. I haven't seen to many parents on here with kids with CP but we did Conductive Education for our daughter back in May and WOW!! We were impressed. If you don't know it is DEF look it up!! We attended the Conductive Learning Center for 4 week in MI.quote
posted 17th Oct '11
Hello! My name is Kristen Owings. I am happily married to my wonderful husband Matthew. We found out recently that our three year old son, Aiden, is hearing impaired. The diagnosis actually came as a shock seeing as no one in either of our families has hearing loss (unless you count both our grandparents that have lost hearing due to age). He will be undergoing surgery in the month of November to first have tubes placed, then we will be discussing options to help his hearing. His hearing loss has not changed him in any way. He is still an active three year old who loves Cars, fruits and vegetables, and hates getting dirty. This makes him no different than any other child, he just needs things louder, repeated, and more attention when learning. I am hoping that we are able to prepare him to enter a public school by August when he starts Pre-Kindergarten half way. He will be starting speech therapy as soon as he turns four. I have been working on teaching him ASL (American Sign Language) in the event that his hearing loss is progressive and so that he may begin to connect with his culture. I wonder how l help him learn and cope with the changes he is going through, as I can not relate or fully understand how he feels.
We are also expecting another boy, Tristan, in March of next year. I am hoping that the doctors will be able to know faster with Tristan if he has hearing loss as well. It makes me nervous to know that Tristan could possibly experience all the difficulties Aiden has, due to the fact that doctors refuse to test his hearing properly.
Thank you for providing this forum!
I have 2 kids & 2 angel babies & live in Oklahoma
posted 24th Oct '11
Hello my name is NIcole and I am 25 years of age with Velo-Cardio-Facial Syndrome. My parents found out that I had VCFS when I was three years of age! When I was a little girl life was so hard for me and every day I cried myslef to sleep! School was the worse because I always got made fun of! I've got a speech impairiment and learning disiability. Everyone always made fun of m speech impairiment, but people can be so cruel. Whenever I needed or wanted something I had to point because nobody could understand me and that was very hard. Eventually I took speech in school and that helped me out so much. As I got older though life got a little easier for me, but life is also hard. Nobody said life was gonna be easy. I was always in and out of the hospital because of how sick I always was. My tummy always hurt and sometimes it still does and never figured out why. I always use to lay on the kitchen floor when I was a little girl because it felt so good. Now I have a 2 year old son whom I love with all of my heart. He also has VCFS which makes me really sad. We found out he had VCFS when I was pregnant. I was in tears when the doctors called us because I don't want him to go through the same thing I went through. So far everything is really good with him, but his thyroid. He will be going to speech here really soon and be going to headstart when he is 3. I am very scared for him when he starts school because I don't want NO kids making fun of him. His daddy and I are still together. We have been together for over 3 years and he doesn't want to get married, but I'm hoping someday he will. I love him very much though for everything that he has had to put up with the past couple years! He is such a good daddy! quote
I have 1 child & live in USA
posted 30th Oct '11
My name is Brandi. I am a married mom of 3 kids. My two youngest are typicals, and my oldest has Complex Partial Epilepsy, Microcephaly, Pica, Immersion Hypothermia (extreme drop in body temperature), Anhidrosis (Inability to sweat), Chromosome Translocation, undiagnosed genetic and metabolic condition, peripheral hypotonia, and so many more. She was diagnosed at 27 months old when we went in for an autism assessment. So far, all genetic testing has come back normal.
It's an adventure, that's for sure!
posted 26th Nov '11
Hi my name is Daniele i have three children 4, 3, and 19 months.. we just recently found out our eldest, my daughter Emily, has autism. we have been in and out of DR offices since she was 2. We moved to Indiana this year and the doctors knew immediately ..they have been so supportive and are doing everything they can for us. She is now in OT and Speech therapy! SHE is also attending the KIMBROUGH EARLY Learning center for disabled children and they are doing wonders for her, not to mention Ive never seen her happier! My 19 month old Dylan has hydronephrosis of both kidneys and ureters . He has had ultrasounds every three months since I was three months pregnant with him. We still dont know why..hes had a reflux test and vcug. Now he is going to Riley childrens hospital in feb for more tests. HE seems fine but has edema .quote
posted 6th Feb '12
Hi. My name is Bethany. I have 2 beautiful children. My youngest has Cornelia de Lange Syndrome. He was born at 30 weeks 5 days. He was diagnosed at birth. I went for my 3rd ultrasound with my doctor and they told me that my placenta was small and he was very small for being 30 weeks and they couldn't see his hands so they wanted me to go get a high resolution ultrasound. There we discovered that he was measuring small and he didn't have his lower right arm/hand and no left hand. I was hospitalized to be on bed rest and monitored closely. The night that I was hospitalized they came in to do an ultrasound and he wasn't doing so well so they did an emergency c section. He weighed only 2 pounds 4.9 ounces. He is currently still in the NICU because he is having feeding difficulties. They are going to put a G tube in and once it heals we will be able to have our baby home.quote
posted 21st Feb '12
that must have bin terifing for you i hope for the
best for you and your little one
posted 1st Mar '12
Hi my name is Jennifer.
I am a mother to two beautiful girls. My youngest was born on feb 3rd 2012. She has a unilateral cleft lip and a severe cleft palate. She is now learning to eat with a haberman feeder. She will have her first surgery to fix her lips in may.
posted 9th Mar '12
Hi everyone, my name is Beth. I am 34 yrs of age, live in Merritt Island , FL. My daughter is Lizzie and is 10. She is Autistic PDD NOSquote
posted 15th Mar '12
hey everyone =) my name is stephanie im 21 years old and im a mother of a wonderful 2 year old baby boy who has down syndrome...he is my only child and everyday im learning more and more about raising a child with special needs.....i would like to meet other moms who can help me out when i have questions so feel free to add me to ur parent tank or message me thanks =)quote
posted 15th Mar '12
Hi Stephanie! Nice to meet you Quoting Hiis_mommy!:" hey everyone =) my name is stephanie im 21 years old and im a mother of a wonderful 2 year old baby boy ... [snip!] ... to meet other moms who can help me out when i have questions so feel free to add me to ur parent tank or message me thanks =)"
posted 19th Apr '12
My name is Angel im a mother of 4 beautiful kids . two girls and two boys. my youngest son is 2 1/2 years old and has sensory processing disorder . he's a sensory seekerquote
posted 19th May '12
My name is Liz, I'm mother to a beautiful little baby boy, Carter. He's 6 months old. When he was just 1 week old he was diagnosed with Hirschsprung's disease, a disease where part of the nerves in the intestines don't develop fully in utero. He went in to have surgery to get part of his intestine removed at about 1 1/2 months. After his surgery, his blood pressure got really low, his heartrate was higher than the sky and his temp kept dropping. He was going into a septic shock and the doctors and nurses didn't catch it. We almost lost him and they rushed him to the PICU where they did an emergency surgery and put in a colostomy. He was in a medical coma for 2-3 weeks. On the ventilator, many different medicines & by the second day he was having seizures. They got the seizures under control and after spending 2 months in the PICU, Carter got to go home with his colostomy. He will have it reversed sometime in the near future. In the meantime, we give him two different seizure medicines every 12 hours and a blood pressure medicine every 6, though, he's finally being weened off of the blood pressure medicine. We take care of his colostomy. All of his poop comes out into his colostomy bag, when we change a diaper, we also empty his bag. We change his bag as well. Other than having a colostomy, Carter's a happy, healthy little boy. He only weighs 13 lbs at 6 months but that's due to spending so much time in the hospital and being on the vent. He has a few developmental delays but otherwise, he's our little miracle.quote
posted 27th May '12
Quoting Samma[GDS]:" My name is Sam. I have a 21 month old named Lincoln who has Down Syndrome. We did all the testing whenI ... [snip!] ... are very impressed with his cognitive development, and aren't too concerned with the fact that he isn't wanting to walk yet."
I want to say I know what you are going through, even though my son has not been diagnosed with anything technically (yet, hopefully not ever, but time will tell). My son almost died because he caught group b strep from me and had pneumonia when he was born on April 6th of this year. He was put on an ECMO machine which is basically newborn life support. Julian survived but we will not know if he will have a developmental delay yet until he is a little older (around 2 years old). I was so upset over everything, but after he survived major surgery and being on the ECMO machine, it didn't matter to me. All that matters was that he was alive, and that we were going to be EXCELLENT parents and give him the best life possible. It's nice to know others who feel the same way. I think it's great that you all are dealing with the down syndrome so well. Your little one is so lucky to have such great parents