Newcomer

[Christina]

I am a newcomer to this site. Actually, a newcomer to this entire thing. I only just found out a few minutes ago the irony of my situation. My second daughter was born on October 21st this year. I find it almost sadistically ironic that she has Brachial Plexus Palsy and was born during Awareness Week. I had never heard of it, and none of the risk factors applied to our situation. I'm still kind of in a daze about everything and not too sure as to what to do. My daughters name is Ambrosia. And I'm Christina. Hi. Just thought I could maybe get involved ina a support group, do something more than..well, more than nothing. Please keep my daughter in your prayers> You and yours are all in mine.

[tcon]

Hi Christina, So Sorry to welcome you to this website. I have a 2 year old with a LOBPI (left obstetric brachial plexus injury). The first few months are the hardest, it is such a hard waiting game. At this point you should be doing ROM (range of motion) exercises with your child a few times a day. Please become familiar with the recovery time-line and try and get your daughter in to see a BPI specialists ASAP. Where are you from? I am sure you will get tons of advise here when people return from the holidays. You will be in my thoughts this holiday season. Again, I am so sorry to welcome you here. Please email if you have any questions.
Terri

[Christina]

Thank you so much for replying. I'm on the verge of tears for your thoughtfulness and kind words. I'm living in Charlotte, NC. Originally from Iowa. Ambrosia seems to be doing incredibly well and I seem to spend all my time praying for her. I welcome any and all advice. Like I said before, I hadn't even heard of BPI and now it's all I know. Again, thank you and God Bless. BTW, I'm very lucky...we have a therapist and doctor that specializes in BPI. She comes in once a month right next door to the hospital that Ambrosia was delivered.

[Logan'sMom]

I'm sorry to hear of your daughter's injury. My son is only a few weeks older than your daughter, born Sept. 29th, and has a brachial plexus inury in his right arm. I'm originaly from western Iowa, (Manning) but we're now living in Omaha. I'm glad to hear you've found a BPI specialist in your area and are receiving therapy. I'll keep you in my thoughts and prayers.

Crystal

[dmom]

Oh, Christina, welcome to the club none of us wanted to join. I'm so with you - there is so much confusion, anguish, grief and all the rest after your baby is injured in this way. I will definitely pray for you and your little angel. What a rotten thing to happen to any child, and the timing certainly does seem sadistically ironic! But trust me ... there is a LOT you can do for Ambrosia.

I'm in Texas and have a 3-year-old son, Danny, who is LOBPI (that's left obstetrical brachial plexus injury -- you'll get good at the acronyms around here!).

There's a lot to learn, and this website is a great place to start, for both information and contact with other moms. Another few websites that also might help you are these: www.injurednewborn.com and
www.drnathbrachialplexus.com. Dr. Nath is a wonderful BPI specialist in Houston.

Please feel free to e-mail me off the boards if you want to talk/share experiences/ask questions, or whatever.

Take care,
Janet

[dmom]

P.S. I'm sorry. I forgot to add one thing! You mentioned a BPI specialist you have right there. I am wondering if that is Maureen Nelson. I seem to remember that she is in N.C. now, but we saw her when she was at Texas Children's Hospital in Houston. If that's who you're talking about, that is great - she is wonderful!

Janet

[Christina]

Yes! That's the specialist! She has been my guide through all of this, though I am slightly disappointed. She never mentioned hand-to-mouth. I just read it on the injured newborn website. Already in the few hours I have been reading, I have gone from horrified and terrified to mostly relieved. My daughter put her hands around the top of her bottle for the first time Christmas Eve morning. I knew the movement was good, but I didn't realize that it actually meant something that good. Thank you all for being so helpful to me so quickly. In only a few hours, I have learned so much!

[tcon]

That is great news that she has put her arm on her bottle! My daughters birthday is about 1 month before your daughters (but in 2002), I remember that we saw such improvement from thanksgiving to christmas. Everyday she could do something else. I hope that your daughter continues to improve!

[Kath]

Christina
I am glad you found us and sorry your daughter was injured. I am right obpi and a mother and grandmother. Until 5 years ago when I found UBPN I thought I had a rare birth injury. You will find lots of support and information here at UBPN and many families to connect with who have walked in your shoes. By asking questions you will find differing opinions on facilities and doctors because our community uses many different doctors and hospitals. You will find the support and information you need.

Please start with the home page and you will find important information and a frequently asked Q & A section. With the help of some experts it has been recently updated. We also have a Medical Resource Directory listing facilities from all over the world that specialize in bpi care.
http://ubpn.org/medicalresources/

This site has been designed to meet the needs of the brachial plexus community and we have been updating our information on a regular basis.

Please send your name and address to Nancy@ubpn.org and she will send you a copy of Outreach. This is our magazine published twice a year. There are some amazing articles, many written by bpi specialists from the various fields of services required for proper bpi treatment.


This must all be so confusing for you right now but take time to enjoy your beautiful daughter. Since I am the one injured I view this injury from a much different perspective. I am sure my Mother felt just like you do... but we do survive and lead full lives it’s just a little different.

If you have any questions please feel free to e-mail me at KathM@ubpn.org

I am the Secretary of the Board of Directors of UBPN

Kath

[Christina]

Wow. What else can I say but wow. Everyone has so quickly reached out with a helping and kind hand. All the advice and kind words mean so much to me. I can't even begin to fathom what it must be like to have these injuries all your life and find it's not as rare as you thought it to be...you must be such a strong person to have dealt with all this. Everyone here seems to be so strong. Thank you all for your support. I hope that maybe in the coming months and years, I will be able to give some support back.