United Brachial Plexus Network, Inc.

Hi everyone. I haven't baan posting much but I lurk often

I am feeling sad, frustrated and a little angry again.

My 7 m/o dd will be having her second assessment with the BPI team at Toronto HSC in about a week. I am not worried about that because I have all the confidence in the world in them. What I am sad and frustrated about is just the function (or lack of) in her arm.

She's just at the stage now where she wants to MOVE!! She would be crawling now if it weren't for that a$$ho!e of a doctor. I watch her "flounder" on the floor. She can't weight-bare on her right arm, she has NO supination and she can't lift her arm above about 90 so she can't lift her arm to pull herself forward. KWIM??

I get so frustrated and sad for her when I watch her. She's got her knees right under her but then she does these face plants into the rug when she tries to go forward.


Grrrrrrrrrr!!! I wish I could force this kind of emotion on the OB! It's heartbreaking to watch your child struggle to do somthing that she SHOULD be able to do. That she was set up to be able to do until the moment she came into this world! I saw both of her arms moving perfectly in the ultrasounds!

Thanks for letting me vent. I just keep hearing "oh, she's doing so well." and "Oh, you can hardly tell anymore!." Yes, she does just fine mid-range if she doesn't have to use her fingers very much! Grrr again!

Thanks - only you guys understand )

we know it hurts Bonnie and feel bad for each and everyone of us that has to go through this. It sometimes lessens as time goes on BUT it never, ever disappears. As they grow older and show us that they can do things we tend to mollify ourselves (at least we do here) with what she can do, even though all of the CANNOT DO is always there in the background.

Hang in there, she will get it, one way or the other. My daughter never crawled--she sat up on her bottom, stretched her legs out and hopped like a frog on it's bottom. And she wasn't a bpi kiddo. It has taken Katie over two years to learn to crawl and it is only for a few seconds before she gives out and smacks her face--but she does it again later!

Take one day at a time and don't let the bitterness get you down.

I hear your frustration and anger and it's important for you to come in contact with your emotions- so this is a good thing!

About your sweetypie....

Supination won't come in - in the normal developmental ladder - until about 11 months. So you have a ways to go (even if she was uninjured). So that's one piece off the grief list for the moment at least.

About the crawling - do you work with a PT? I say this because PT really helped my daughter transition into crawling. We did 'ball' work and a lot of on the belly work that really helped her be less frustrated about being on her belly and moving forward.

Then next - there are things like a Pedi Wrap or air splints or custom made splints that will help support the whole arm so that it can learn how to weight bear. I have pictures of these at http://www.injurednewborn.com/maia/splints.html

I think that crawling (whether it's the right way or differently abled way) is probably one of the best exercises our kids need to get for their arms and shoulders. But you can start slowly with other things until the child is strong enough to actually put weight on the arm with or without support.

I know you are angry and I'm not trying to douse your fire...but try to turn it into energy that will make being on her belly and trying to move forward a positive thing - have fun with it - think up all different neat things that will make her laugh and have fun with it. She needs to know that her differently abled way is a good thing and that it pleases mommy - not make mommy sad. Baby steps forward.

Does this anger and sadness when your child can't do something go away? I don't think so. I think it just shifts a bit here and there...but mostly I think we're going to be having these emotions for a long time...even after our kids are grown up and they may have other types of problems in their lives.

big hugs to you Bonnie,
francine

Hi Bonnie
I'm with Francine on this topic, I think that 7 months is really too young for a baby with a bpi to be crawling on all fours. My son Gavin had a LOT of weight bearing work on a ball with his physiotherapist before he started crawling on all fours at 11 months of age. He crawled on all fours until he walked at 16 months old, his therapist used to joke about tying his legs together so he couldn't walk, as crawling was such good exercise for his shoulder and arm!
Don't give up hope of her crawling, there's plenty of time still!
Best wishes
Karen

My son will be a year in two weeks and we have been using an air splint to help him bear weight. He hasn't crawled yet but has been so close for weeks! His OT has used an inflatable cylinder under his middle for support. I'm curious about the ball, Karen. He has been getting around by leaning forward on his unaffected hand and affected elbow, then scooting his bottom ahead.

I have to agree with francine about turning negative energy into something positive. My biggest fears since my son was born have been about his self-esteem and less about his abilities (although I worry about that, too!) I concentrate during exercise and therapy on smiling and sending him positive vibes.

Julie

What is a physiotherapist? What is the difference between a physiotherapist and a physical therapist?

same thing marnie - different country

francine--you were so much more eloquent in your answers than I am. Hope I wasn't too vague, I just wanted to let her know that I understood her pain...as we all do well too well.

Humour is great medicine, Look for the lesson, see the divine-
ummm am I thinking of a physiatrist? here(in Florida) that is an actual Dr. -well I think anyways..its too early !

christy - the funny thing was that we posted at the same time! hey anyway it's not a post contest LOL LOL
big hugs,
-francine