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09/18/2009 07:50 PM

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bennettspop
bennettspop  
Posts: 1
New Member

Hello, my name is Mark. I have a 4 month old son with Type II OI. The doctors gave him 2 months to live. Goes to show what they know. My wife & I have the hardest time sometimes comforting him. He gets very uncomfortable after he eats, he cannot tolerate gas, & yet we cannot burb him like a regular baby because it would crush his little chest. Any suggestions???
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09/23/2009 10:02 PM
paulapaz
 
Posts: 2
New Member

Hi Mark, I just wanted to tell you that I know how difficult it can get but to keep being strong! I was born with type III OI, but back where I was born (South America) and in that time, they didn't know much about how to take care of me. The doctors said I wouldn't live to be six months. My mom had to carry me around on a board so I wouldn't break when she tried to burp me and breast feed me. She tells me I wouldn't even tolerate being breastfed. Fortunately, I also had a pediatrician who gave my mom a lot of support and hope. And here I am, going on 24 and about to finish two degrees. What I'm trying to say is, despite what the doctors say (though well intentioned and professional at this stuff) and despite how difficult it is now, they don't KNOW what will happen. Your son could make a sudden improvement like i did. Now, i know that the type he has if far more critical, but I believe I've heard stories of type II infants surviving. Also, there are far more treatments for this than there was in my generation and those before me...

Have you tried getting information on OI Foundation? Maybe there are links there and contacts you can that will help you or give you suggestions on how to burp him and such.

Here's the link.

http://www.oif.org/site/PageServer

Best wishes and warm regards.


09/23/2009 10:05 PM
paulapaz
 
Posts: 2
New Member

p.s. Try to gently massage his back and stomach when he's fed. It may help. Smile

10/28/2009 05:59 PM
Kim31525
Kim31525  
Posts: 161
Member

Mark~

How is ur little one doing I had 4 kids 3 of which have OI the 1st born died at age 2months and the others R 17 years and 16 years they said my 17 yr old would be deaf by age 12 but yet she still has her hearing and shes doing ok I pray ur baby is well I will keep u n my prayers if u need 2 know anything just let me know i have been through it all trust me>

May God be with you and ur family n ur time of need and I send the angels to protect ur child...

Try putting the baby on a soft pillow and let No one hold him but u and ur wife if u want others 2 hold him then make them sit down and pass him 2 them on the pillow it will protect them from causing a fracture of his ribs and skull and get the docs to x-ray 2 make sure the skull is not over lapping as that happens at birth and never allow a nurse to take blood by squeeing the foot that causes fractures you can also go to www.oif.org and print out posters to put over the bed when ur in the hospital and on the hospital door any Questions feel free to contact me Im Kim and I am an expert on Oi I made it my life to research it....my yahoo id is kc1135

may God be with you

Post edited by: Kim31525, at: 10/28/2009 05:59 PM

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