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Hello! Im Renee, wife to Kevin and Mom to Ryan 18, Beckah 15, Robbie 13, Raelynn 10 and Daniel 6.
I have two special needs children.
Robbie has Prader-Willi Syndrome. It is a deletion on the 15th chromosome. He is short in stature, with small hands and feet. He academicly functions at about a 2nd grade level for all subjects except reading, and there is he at about a 3rd to 4th grade level. He has behavior outbursts and has imaginary friends that he talks to. One of the biggest parts of Prader-Willi Syndrome is the part of your brain that tells you that you are full doesn't function, so he is constantly hungry and seeking food. We have to lock our fridge and our cabinets, I also have an alarm on his door so if he gets up in the middle of the night I know.
Daniel is legally blind, he has micropthalmia, optic never colobomas, and 1 detached retina due to the colobomas. Daniel is an amazing little man. He is on the go and if you couldn't see that his eyes are not normal then you wouldn't know he is blind.
Anyway I just wanted to introduce myself and look forward to offering and receiving support, and getting to know everyone here.
Hi Renee! Welcome to the board! The women here are amazingly kind, helpful, and supportive! Your kids are beautiful-looks like you have your hands full!
I'm Jessica, mom to Kannon (3) and Milo (17 months). Milo is our special needs kid. He has Russell-Silver Syndrome (a rare form of [primordial] dwarfism), so he's short stature, has feeding/weight gain issues (feeding tube), severe reflux (had fundo, is on all sorts of meds, incl. for delayed gastric empytying), severe asthma/BPD, and a few other things we think are related. He also has a hypothalamic hamartoma, which they think has at least caused a severe growth hormone deficiency (atypical with kids with his dwarfism type), and possibly a few other issues. We're waiting to hear back about surgery. I'm sure I'm leaving out stuff, but there's the basic stuff!
Welcome, and can't wait to get to know you better!
Welcome to the group, hon! I'm glad you've joined us, as muchas I hate to see people needing to join. It's kind of nice for me, with such a little one, to see some parents with older SN kids - like a light at the end of the tunnel, there is a way to survive and deal long term.
I've got two kids, Eric (3) and Danny (1). Danny is my special needs son; he was born with a virus called CMV that left him with calcifications in his brain. We still don't know what all impact that is going to have long term. Currently, he has developmental delays, low muscle tone, and a profound hearing loss using cochlear implants to hear.
Hi and welcome!! I'm so glad you found us The ladies here are so sweet.
Your kiddos fit in well here, we are a diverse group
I'm Hope, Mommy to SN Ava, who is 19 mths old with Tracheo/Laryngomalacia ( floppy airway that collapses) and cerebral palsy. She is currently oxygen dependant (1 L) and uses a gait trainer to walk. She's perfect
Hi I'm Valerie- I check in here every so often. I have Claire who was born with a fetal maternal hemmorage, so she was barely alive and stared having seizures after a couple days. She is only 11 months, so we are still in the "waiting" stage. If she is not crawling at 1 they will do another MRI and then "diagnose" her if they see anything I guess.
I agree with the other girls, it is nice to see someone with older SN children- I'm sure you have been through many struggles.
hello everyone... I have been a member of JM for a few years, but have not been on here in a while. My hubby had three children when we met. My oldest bonus son has Cerebral Palsy, is blind, and has seizure's daily. (he is unable to walk, and is in wheelchair). We have 2 son's together, and our youngest son, Cash, was born w/ Albinism. (commonly known as "Albino") .. He is visionally impaired due to his Albinism, and it has finally been confirmed (mommy has known for awhile, mothers always do) that he also in on the low end of severe Autism. These are two different conditions he has, and one had nothing to do w/ the other.
I plan on getting on here more often now that my boys are both in school. (Cash is three, in the PPCD program w/ the school district) I think it will be good for me to have other mom's who know what its like to have children w/ SN's. Family and friends are great, but they cannot always truly relate.
I totally agree... I love this board because it's mommies who get it. The needs our kids have are all different, but there's a certain universal understanding when your child has special needs that no one I know off the computer gets, no matter how supportive they are.
Welcome. I'm Traci, mom to David (7), Melanie (4) and Joey (almost 17 months).
David is being assessed right now for some behavioural needs.
Melanie is speech delayed with (as of yet) no official reason.
Joey has Langerhan's Cell Histiocytosis. In his case it affects his lung, liver, skin, solid tumor, and ears. At this time we know there is likely permanent lung damage, probably liver damage. We don't know how it has affected his overall hearing yet, and because of the treatments we won't know for sure for a few years about long term. At this time he is also being tested for Prolonged QT Syndrome. He is delayed in several areas, but they believe this is due to the chemotherapy and steroids, and some to the disease itself but they also believe he will catch up.
As of last week Joey is also being evaluated for Diabetes Insipidus (water diabetes, very different from sugar diabetes). if this is the case he will need to be on a hormone replacement indefinately.