Hello. My son is now 9 years old (soon to be 10). He had the same problem with the underwear. I can remember trying to even FIND underwear for him. His ...
hello i have a friend that wants to join this group her little girl is hailey like mine and has osteogenesis imperfecta like mine. how would she join her email...
I guess I have been a "lurker" for sometime now. My little girl has achondroplasia. We didn't find out until she was approx 9 months old. We haven't had the...
Hi. I am a new member, and am looking forward to getting lots of info. I have and a half month old son that has SED, and he has had a lot of medical...
Hi. My son was born in September of 2004, and has the same diagnosis. My son also has a monitor, and is on a small amount of oxygen when sleeping. Have you...
I don't know if this helps, but Dr. Hoover-Fong is a Geneticist at Johns Hopkins, has a background as a pediatrician. She is great. Our regular pediatrician...
My son also arched his back a lot when he slept..he had severe reflux. He had a sleep study, which I would highly recommend. ... an infant, also had reflux and...
I have question. I have read in a few places that regular bucket infant seats (the kind that snaps into the base) are not good. Does anyone know if this is...
My son is 5 and a half months old, and he just had the procedure done. He actually had the g-tube first, then due to a scary reflux eposode, they decided to do...
Hi there, After reading some posts here today, I have a question. Does growth slow down a lot after the 1st 6 months of life for achon children? I ask b/c...
I am wondering, too, when Dulci's growth will slow down. She is 7 months, weighs a little over 16 lbs and is about 24 inches long. She started out at 20" and...
Hi, My name is Amy and I have a 16 day old with SEDc. While I don't have too much experience with the disorder, I would love to talk with you. Our only problem...
My Charlie who is three now, was always very close to his average height twin sister, maybe only 1 or 2 inches behind her. It seems that he is just now slowing...
Rachel, Your story made me smile because at 16 pounds, Dulci _is_ a big baby! You'll gain lots of funny stories along the way about this sort of stuff. One...
Our Kevin was born weighing 10 lbs 12 1/2 oz -- so dwarfism was the furthest thing from our mind when we finally "discovered" it a few years later. Kevin has...
Vita, I couldn't help but respond when I saw your post!!! We, too, have experienced this. Once in the grocery store, it was raining and I had carried Brandon...
All GREAT stories about Brandon -- I totally enjoyed reading them and am still laughing about the "nasty floor"! :o) It sounds like Brandon is one smart...
Do you think that, right now, at 7 months, Dulci is big? All my babies have been very good sized so she is acctually, for us, a very small baby. At 7 months,...
For right now at least, Dulci sounds big to me for an achon baby -- other parents with achon children can give far better input on this subject than I can. I...
For those who posted about growth of Achon. kids. I kept track of Amelia over the first few years of her life because the doctor did not have the achon....
Hello everyone, I just got off the phone with a good friend of mine, Miranda Hall. Her 3 month old son, Tanner, is in Cincinatti Childrens hospital at this...
Hi there, Just had to share a proud moment. Today, Alexandra was laying on the floor as Mom and Dad watched some early morning TV. Lol and behold we look down...
To little Tanner , Miranda and Devon, God bless. My thoughts and prayers are with Tanner and with both of you. Heartfelt thoughts your way Shelley ( Stuarts...
I have a little girl with achondroplasia, she is 8 years old, here is a little back round information...She has been riding horses, since she was almost 4,...
The only thing that I can say is this: if your daughter did NOT have achondroplasia, it sounds like this would have happened anyway. And I don't think that you...
Has your daughter been checked out by an orthopedist who really knows about achondroplasia (preferably an orthopedic dwarfism specialist)? Not only could such...
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