United Brachial Plexus Network, Inc.

Thank you so much! It brought tears to my eyes! I really needed to be reminded that my son will be fine too! He'll grow up and learn to adapt and do wonderful and exciting things! He'll be living in a 2 handed world with one hand.... and that's reality.... I needed to be reminded to find the joy in life. The way he was giggling today--he's already found it!

Jennie

Pam
It is so good to hear from you. Ashley has the determination that will serve her well throughout her life. It is so great to read the boards and see how well some of the more "mature" children are doing. She is a very beautiful young lady now. BPI kids never give up or shy away from challenges. They just keep on tryings and never say they can't... that is why so many accomplish so much more than was ever expected of them.

Kathleen

What a POSITIVE post. Thanks for that. I teared up because I too have thought about what my daughter will be able to do when she gets older. She loves soccer, she loves to run, she wants to play basketball, t-ball, she chases boys, she can do anything she wants to do. It truly is amazing...and most of us parents worry, when the kids don't worry about it at all...they figure out how to do what they want to do. Thank you so much for this positive post. My daughter is 8 (going on 20) and now I feel better hearing what your daughter has accomplished and how she does not get discouraged and quit trying. She should get plenty of hugs for her determination.

A big huge thank you. That was great. I am a mother of 2 boys. 5 and 11 months. The baby, Javier has ROBPI. Very severe. But I am not worried about how his life will be. I am worried however, when or how does one decide whether to keep having surgeries, therapy, etc? He had primary surgery 2 months ago and I don't know if I will put him through that again. There are no gaurantees. With his 1st operation, I constantly fretted about whether we were doing the right thing or not. Surgery is serious and is it worth the risk just to try and fix an arm? I go through this often. I mostly feel like it is a lifetime injury and whether he recovers or not I will love him just the same and raise him to be a strong young man.

Hi Pam:
First I would like to thank you for all of the help I received from this web sight. Your story sounds very familar. My daughter is 13 also with left BP and nothing stops her either. She was capitan of her cheerleading squad. Her squad came in first in state and city. When we came home from TCH with that crazy splint on she insisted on going to her first boy girl school dance. I was so afraid of someone knocking into her she went and had a great time. She has shown me the true meaning of strenth, courage and determination. Gabby is still in PT&OT only once a week. (she hates but has become such a routine). Thank you again. We have so much to be thankful for. God bless you and Ashley.
Mary

I have been reading this message board for many years and just started posting. Thanks for all your work on this subject.

What a great message/post !!!

Thanks Pam for your encouraging post. What a beautiful and strong daughter you have! I hope my Ashley will have as much strength and determination as your Ashley does. She's almost 11 months and already very determined and fearless and keeps me on my toes 24/7

Hi Pam,
Yes I remember you and Ashley. It's been a while (years) since I have posted or been involved. Your posting has come at the perfect time for me. My daughter Emily, is 7 1/2 now and in 1st grade. We are experiencing school sports and organized sports and she wants to do it all. Softball is extrememly competitive in our area, even at such young ages. I am very concerned about her being teased or treatment from coaches, if she can not play up to the level expected. I of course, do not put my fears and concerns on her or and do not want to hold her back in anyway. Luckily we were able to miss sign-up, due to vacationing and camping this year, but I know the time is coming soon, where I will have to let her join. It's a tough balance, I want to protect her, but not over-protect her. We also let her injury consume us for many years. We still do therapy and all that, but do not make her injury a major part of our lives anymore. To her, it's no big deal and she doesn't let it stop her from anything. She has a very positive attitude and her favorite word is 'perserverance'.It's very encouraging to hear your and Ashley's story. Thank you.

Julie Wolfgram

It is so great to hear how an older child is doing in dealing with BPI. I have a 9 year old daughter, Alyssa, with a LOBPI and I wonder what will happen when she wants to do certain things as she gets older. She has been in a dance group at her school for 2 years. It is wonderful therapy and she surprisingly learned how to do cartwheels now! Something we never thought she could do. She has had 4 surgeries to date and is schuled for another with Dr. Nath in June. I am hoping this is the last one she will need. I want to focus on other things, not just her bpi. I can say that she does not let it stop her at all. She does everything the other kids do. I just worry in 5 years, wll she be able to do what the other kids are doing. She loves dance and cheerleading and I worry about her getting her heart broken if she isnt accepted because she isnt able to do what the other do.