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Osteogenesis Imperfecta...

My little guy was diagnosed about 2 months ago with type3..
Its SO scary, but so far we havent had any fractures! Laughing out loud
He is going to be a dwarf, and people are SO rude about it!!!
He is almost 6 months old, and is around the size of a one month old..
Almost 10 pds, and around 24 inches..
Its so hard, because most doctors arent trained properly on how to take care of him, how to handle him. So they tug on his arms, and do things they arent supposed to... Sad

They told me all sorts of just RUDE things, that he would never really act like a "normal" baby- so now that hes rolling and scooting around, I just want to shove it in their faces... Every week he is reaching HUGE milestones, especially for having the most severe type of OI...

Just wanted to update everyone.. My baby is no longer undiagnosed, and it makes me happy.. Its a scary thing not knowing whats going on...

Although, there is still a TON of genetic testing they are doing- because his case is so different- He might have 2 different types of OI- He still has the doctors confused...

Osteogenesis Imperfecta...

People should not be rude. I am glad you have a diagnosis to work with.
  • By adcaela at 10/23/2007 - 5:28am
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Osteogenesis Imperfecta...

Can you find a doctor in your area that knows more about this diagnosis? Or has worked with someone before that had this?
  • By kell82504 at 10/23/2007 - 5:34am
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Osteogenesis Imperfecta...

It's great to hear that he's doing so well, and also that you have a diagnosis that you can work with. I hope your family finds the help you guys need.
  • By boigrrrlwonder at 10/23/2007 - 11:55am
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Osteogenesis Imperfecta...

Good luck and strength to you mama. Just be wary of "studies." I have said this to mamas here before, so I may sound paranoid. But seriously, babies with rare diagnoses are often targeted by doctors for "experimental treatments; so they can reserarch and publish on the childrens cases. just be aware of any doctor that wants to "do a study' on your kid.
  • By jujitsumama at 10/29/2007 - 12:14pm
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Osteogenesis Imperfecta...

Wow how scary is that. Stay strong mama! I'm glad he's reaching all the milestones and you know what? You should shove it in their faces!
  • By mamatessa at 10/29/2007 - 12:34pm
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