United Brachial Plexus Network, Inc.

Hi all:

As I look thru the posts, and give my opinion on some, I think we sometimes forget to post the good stuff. And so I will.

A new mom on the board asked how she should deal with her 14 weekold obpi child. We have posts asking about surgeries and modalities... So now some news about what it all can lead to:

a 4 1/2 year old lobpi girl who climbed the rockwall at camp!! Juliana goes to a regular camp, on the bus, and is in a regular group with girls who are headed off to Kindergarten in the fall (she is too). She plays soccer, softball, tennis, swims (like a fish), and does arts and crafts. The rock wall came up because there is an activity which was deemed inappropriate for her left arm (the group leader and counselors decided this). So, knowing that she had been at a therapy facility that used rock walls... they offered up the rock wall as an alternative. Luckily for us, the counselor in charge of the rock wall was our bus counselor who knows her and her limitations well. They hooked up the harness (all kids use the harness) and put on the helmet (again, used by all) and off she went. Did Evan support her more than the other kids?? I don't know, but she was the ONLY girl in her group to do it!!!!! THE OTHERS WERE AFRAID!!
I will admit that some of the art stuff is harder for her (she admits that too), but she gives it her all and her counselors help her when she needs it.
She is front-runner for camper of the year! Her bus driver is the counselor for a different group, but also in her part of the camp, and she tells me all the time how much fun Juliana is having in camp.

This is my child who had no function at all when we took her to tch at 4 1/2 months old for primary. She had little more when we did mod quad 10 months later. A little over a year after that she had biceps lengthening...She is out there, having fun, being a kid.

Yes, the school is making some very important accommodations for her in the class room. But for those of you who wonder what the future holds, the future can hold some incredible stuff. Letting go was so hard with her. But it was worth it. Seeing her come out of her shell and interact with her peers, seeing her become a leader with her peers...is just amazing.

When we first realized the magnitude of her injuries, I truly wondered what life would be like for her. This summer has shown me a glimpse: she will accomplish anything and everything she wants to.

So, to those of you who are new to the boards...there is a light at the end of the tunnel.

claudia

Wow Claudia! What a wonderful accomplishment!
Sounds like Julianna can do anything she wants to do!
What a wonderful example of fantastic progress!

Way to go Julianna!

Claudia,
Your post was so refreshing. Thank you for sharing. I know it's very easy to get sucked into to the depression of it all. Especially when the little ones are just infants. It's the big unknown, the anticipating, the worry. Hearing what Juliana is accomplishing is both inspirational and incredible. I am so thrilled for you guys!

Claudia,
Thank you so much for sharing this with us, it gives me so much hope when I see the wonderful progress of all these kids.

As mom to Kate (15 month old rbpi), the future is always on our mind and we look forward to our light at the end of the tunnel!

Hello. My name is Rachael. I just logged on today for the first time. My son Richie Jr. has erbs palsy in his right arm.
This thread was talking about the good part of it all and I wanted to respond about my son.
When he was born he was 10 pounds at 2 weeks early.
I am small and the doctors say this is why he has this problem. At birth absolutly nothing moved in his arm,muscle,wrist or fingers.
Since then with therapy 3 times a week, movement and firering has returned except in his bicep.
He is now 7 months and an the 14th of June he was all set for surgery. They would take a nerve from his leg and place it in his neck.
The surgeon said that for a fact that the nerve that controls that bicep was completely severed.
So don.t you know that the day before surgery he got totall full movement back in that bicep! Not just some firering but total movement and bending!!!!
Needless to say he did not need surgery! And he has gained 14 new skills since then that he did not have!
All I can say is that it was God who healed my big guy. Isn't that AWESOME!!!!
And he is doing fabulous and he is still wowing the Dr.'s!!!!

Rachael

Claudia,
Thank you so much for sharing all this good news. It really helps me start my morning on a positive note and gives me hope. As much as I try to stay focused on the positive, there is plenty of time spent worrying about what the future holds for sweet little Evan, 17 month ROBPI. Hearing what Juliana is accomplishing is very inspiring and it makes me so happy for her. Thanks again.
Sema

This is great to read Claudia! Thanks for sharing. It's so very important to post their accomplishments!

that's wonderful news Rachael! keep on wowing them!!

Claudia,

I applaud you for this post! It is so true...how amazing our kids really are and how vibrant. I have to comment on how important it is for us, as parents, to inspire their self-confidence and keep them reaching for anything they want to do (within reason, of course..we wouldn't want them to go wrestle an alegator!)
I'm sure that many a trying times are ahead, but we'll deal with each hurdle one at a time.

Peggy

This is just a wonderful break from all the bad things I am always thinking about. It is so stressful with all the work involved in making sure our babies get the proper treatment and care for their injury. It feels so good to hear from other parents that it really does pay off and that we are doing the right thing by encouraging our children to do what they can, and look what happens when you do. I think we all know our children are going to grow up happy and healthy, it's just nice to know that they don't have to be so limited in their actions. Our children can do whatever they want as long as we the mommies and daddies stand tall with them and continue to encourage their progress.
Thank you so much for such a wonderful post.