United Brachial Plexus Network, Inc.

Thank you so much for all the energy you have devoted to your web site. I have found it incredibly helpful and informative! I know that it will be an important resource for me for months/years to come.

Thank you
Bonnie

p.s. My daughter was born at 8:34pm on Friday, Jan.18th, 2002 and was diagnosed with BPI by the neonatologist within the first hour of her life (they had the x-ray machine over her incubator in the NICU within 20 minutes). I saw a wonderful PT at my bed in the hospital on Monday morning. She showed me the ROM's then and I have been doing them ever since.

The word is getting out....you and all the folks like you are helping those of us who are just getting started. Thank you.

Francine, I also would like to thank you for your on going efforts to help and make families aware of this injury, you have been a inspiration to me as well.. I cant wait to join you in the task of helping others and in the making families aware... so this should never happen to the family that I reach.. as I have told you my part of awareness is to reach one family. someone that I may not even know or ever will. I dedicate one paragraph to each of my emails to each of the people that I do business with on the web to my daughter Kelsey and to each and every one of the bpi children so that maybe in my efforts that I can educate one family on knowing the signs and demanding the ultra sound of the shoulders!!! I always give a link to ubpn and for Maia's page... for education.. because of you and your web site I feel has helped not only the dealing with your babies injury, it has helped us all in many ways ... Many thanks and I hope to be of some help in the future myself... for all of our babies...

Bonnie~ I would like to add.. no matter what you do~~~ and I am sure you know this.. but never stop working on your babies arm.. dont let it get stiff, Kelsey's arm use to be stiff by the time I would pick her up at daycare and she was only there for a few hours.. and her hand would get so tight and in a ball and fall behind her back.. so by the time I got her home I would be up for hours and working that arm to keep it limp... dont give up on it, that is very important that if you have to take her to daycare find someone that will spend many ~ many ~ many times keeping the arm to going~~~ I only worked a couple days a week and for a few hours and I had to quit because I couldnt find anyone to work on her arm like it needed.. we didn't have the money for me to quit but I couldnt take the chance of Kelseys arm not ever working... I also then started a home day care so I could stay at home with Kelsey something I did for 8 years. when a mom came to me and said that this is very important for my child ~ I love children and I didn what I needed to do.... to help so any person that is in the field of daycare should be there for your child.. sorry so long but I am so for keeping the arm moving.. even if they cant yet.. take care ~ Denise

Bonnie - I am so happy you posted this because I'm SO excited to hear about the neonatologist and the PT coming to your rooom! This is a VERY RARE THING. Here you will hear from the majority of people that they 'may' have been told up front, but mostly they are told, just wait and see, it'll all come back...with no further direction. To have a PT come to you before you a discharged - well that is one classy act. Wish it happened for more people if not everyone.

The thing I have been personally trying to work on is getting the hospitals to order the PT ROM session and to also hand the parents a pamphlet (which we created for awareness)

http://ubpn.org/awareness/A2001newparentguide.pdf

...so that they are aware of the time frames and the need to find a bpi specialist. Maybe you can take a look at this brochure and forward some to the doc who ordered the PT ?

Big shifts in awareness start small.... but getting this pamphlet into the hands of someone that is already standing up to his/her responsibilities in educating parents gives us a good head start at least in your hospital.

...and also... thanks for your kind words!

take care,
francine

We had a PT come to my room in the hospital -- 2 days in a row. She showed us the ROM exercises and had us both practice doing them. She also gave us printed diagrams the 2nd day that she came. Gosh, I'm now remembering looking at the paper while I was doing them. Just curious, how many others here had a PT go to your room at the hospital? BTW, the direction we were given went downhill for a while after this, but at least we got off to the right start with the ROMs. -Tina

Bonnie,
I just wanted to give you some encouragement. I had a beautiful girl June 2, 2000. She also has a BPI. Her injury was very severe. C5 and C6 were ruptured, and C7 and C8 were avulsed from the spinal column. She has had 2 surgeries. I thank the Lord above, because she is doing wonderful. I just had another girl Jan. 28, 2002 (this time by c-section). It brought back memories being in the hospital and all. After reading your message I just want you to know my heart goes out to you. You will find your strength through the Lord. Keep your faith and trust in Him so you can get through this. God loves his children and He will take good care of them!!! My prayers are with you.
May the Lord bless you in a special way.

"All things work together for the good, for those that love the Lord and live according to His purpose"
Romans 8:28

This promise helps me get through life.
Love,
Kristina