New to OBPI...any advice??

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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mandie_s
Posts: 1
Joined: Fri Apr 19, 2002 6:18 pm

New to OBPI...any advice??

Post by mandie_s »

Hello..I am new to OPBI. I never even heard of it until my second daughter was born this past February. We started therapy the day after she was born, and she goes every 4 weeks until she is able to roll over. The neuroligst appt is in a few weeks..and i have no clue what to expect!! She is doing so well and this has been a SUPER week with her arm! We noticed while checking on her at night, she was sound asleep, yet she was moving her right arm (the injured one) EXACTLY the same as her left! She had it up beside her ear..in her mouth..etc...
Yet during the day, she wouldnt move it at all. Her therapist was amazed when i phoned her and suggested that we video tape it for her and the neuroligst to view. That isnt even the best of it! Yesterday after her diaper change...she moved it!! I grabbed the video camera and she amazed my hubby and I to tears!! She had it everywhere!!!

So i will gladly take any advice from parents like me...or even if you know a good site for me to look up!!

Have a blessed day :)
Mandie
francine
Posts: 3656
Joined: Mon Nov 05, 2001 12:52 pm

Re: New to OBPI...any advice??

Post by francine »

Mandie this is wonderful news! Of course you have to keep a watch on this movement. What they are looking for is hand to mouth movement without the assistance of gravity at about 4 months. But it sounds like your sweetypie is getting there!!

A neurologist appointment is usually pretty benign. They look and ask you questions - check ranges - do some neurological tests with some toys. They may take a sharp point and see if she has feeling in her arm. They'll try to make her look right and left and up and down. They will check for reflexes in her arm. It shouldn't be upsetting at all to the baby (if he/she has good bedside manner of course).

Here's a page that will give you a lot of information:
it's on the home page of this site - click on the button that says info for new parents (middle right side).

Also - here's a place that is chock full of information:
http://ubpn.org/awareness

Also - the best advice I can give you is to get your little one to a bpi specialist just to have a look-see. There is a new and great medical resources area on this site - also on the homepage - you will see a box that says Medical Resources....

Also - (am I overwhelming you yet?) look here for gatherings of the bpi community - this is a good way to get your little one looked at by a specialist (free, too) http://www.injurednewborn.com/gatherings.html
It's also nice to go to the picnics to meet others as well - AND they are fun!

I hope and pray that your angel keeps on going forward and moving that sweet arm of hers more and more every day.
-francine

mom to Maia - almost 4 - left obpi

http://www.injurednewborn.com
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: New to OBPI...any advice??

Post by admin »

Thank you so much for your help! I was just wondering how your child is doing with her injury? I see on this site that there are people from 20-50 and they still havent recovered....
What im wanting to know...does ANYONE recover from this injury or will Sarah have this problem forever??

Mandie

oh yeah...i'd LOVE to attend one of the gatherings IF they ever have one in Louisiana:)
m&mmom
Posts: 1395
Joined: Sun Nov 04, 2001 9:34 am

Re: New to OBPI...any advice??

Post by m&mmom »

Mandie,
I have two children that were born with right bpi. Melanie is now 2 1/2, she recovered at six weeks. Matthew just turned 1, his injury was very severe involving phrenic nerve damage. He had primary surgery at Texas Children's in October and it was just recommended today to have secondary.
Cindy
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