Sad mom, with 5 month old with bpi!!!!

[lesleyjane]

I would really like to thank all the parents who have responded to my post, all your answers have been helpful, good luck to the family who will be going to TCH in July for surgery my thoughts and prayers are with you always. I did not realize how many babies and children are affected with this disability. If anyone would like to stay in touch with me that would be great because here in my little town in Ottawa, Kansas there are no children that I know of that have BPI or any support groups as well, you can e-mail me if you'd like. Our daughter Lesley Jane has only seen her Pediatrician and one Specialist named Dr. Renaldi from Children's Mercy Hospital in Kansas City, we were seeing a therapist from Lawrence once a week but had to stop because it was weighing on us financially, we just could not afford to drive up there once a week, I have tried to find out if there is any type of program where our daughter would still be able to see her therapist, as well as trying to get financial help to get us up and back, but to no avail, have I been able to find anyone to help us, I do all excerises that the therapist has taught me, with every diaper change, when she lays on her back she can lift her arm a short distance of the ground, but not for very long, when I get her dressed she sometimes cries like it hurts for me to get her dressed, I do bad arm in first and good arm in last and reversed when I get her undressed. If anyone can give me some more opinions on what I should do next or where I might be able to get some help financially or just some help, I would greatly appreciate it. Well thanks again for listening to me blap on, I guess that is what this site is for, to vent and get answers and understanding. Lesleys' Mom
Danielle

[Paula]

Danielle,
We get therapy thru the Early Intervention Program thru Russell Child Developement Program here in Garden City. The OT comes to my house and does her thing with Aaron. It is free it is from birth to 3 yrs. Your pediatrician should have this info. Have you thought about sending a tape to TCH? Also you can call them toll free 1-800-364-5437 ext 3290 leave a message and they will get back with you as soon as they can usually the same day.
Paula

[Bridget]

Danielle,

Welcome to our community.

Have you looked over the entire site yet? Please make sure to check out the awareness information, in particular the information for new parents. You can reach the awareness information from the homepage.

Also, if you haven't already done so, please email nancy@ubpn.org with your mailing address so that we can add you to our mailing list. That way you will be sure to receive the Outreach publication (we can send you the past two back issues now) and all other UBPN mailings.

Good luck,
Bridget

[lesleyjane]

Thank you for welcoming us to your co
mmunity, we greatly appreciate this site very much, it has helped me to understand exactly what BPI is and what we need to do to help our daughter to get better. I have read most of the information on this site to better understand. I am greatful to all the people who have responded to my post to help me and give me information. Lesley Janes' Mom (Danielle)