AM I ALONE

[admin]

however wouldnt just using 1 arm really effect him later in life. Overuse?????

[3GRTKIDS]

Our child has no choice except one armed living. After 2 surgeries our child still has very little use of the affected arm. So, for us, this is not something that we can be "OK" with. We do not carry hatred towards the individual who caused this, but I do not think we will ever be "OK" with this. We teach our child to be independant and that anything can be accompished as long as you put your mind to it. You may have to do things diffrently than other people, but you can still do it. And we make our child do the things that we know are possible, even if they seem difficult. Watching your child suffer is the most painful thing that a parent can go through, so this is not OK, I can't see that it ever will be either. We will all be fine and have a happy life, but it is definetly not OK.

[admin]

We are acutely aware of overuse but what other choice is there when the other arm is not working? that's why consistent OT watches for bad positioning, teaches us how to massage and stretch and relax and more.

[Kristin B]

Wow! If I may...I'd like to share a few thoughts I've had after reading your post...I don't think you are alone in your thoughts regarding teaching our kids to live "one armed", however, what we as adults think we can deal with may not be what the child him/herself can deal with. The awkard stares, the questions, the feelings of being different, etc. At 9 nine days old, I felt for my daughter, well this isn't pleasant, but this the hand she's been dealt so I'll do everything I can to teach her to "deal with it". As she grew, I could already see her frustration with her right arm not working. At 6 months when she tried to manipulate a toy with 2 hands, she couldn't and she knew it and she'd look at her right arm and cry; she still BITES her right arm at 14 months old, in frustration. She couldn't crawl, so she learned to scoot around on her back side, etc. I've done ROm with her since 9 days old and she's been in OT and PT since 1 month old and as she's gotten older, I've thought more about her future, instead of her present. Is she going to be able to hold her own infant and feed it a bottle, bathe it safely, carry it safely, pick it up and hold it? Is she going to have problems driving a car? How is she going to feel at the school dances when she can't put her arm around her date to dance? Will she ever be able to feel 100% intamacy with a partner if she can't get one arm up and hold this person as close to her as she can? I honestly don't know the answers to ANY of these questions. But I do know that she deserves the chance to do anything possible to get at least some function to her right arm to lesson the degree of difficulty she is going to face year after year. This is an individual choice, to do something or do nothing...an infant cannot make that choice so the parents have to and its not easy, God knows. I still haven't decided what to do as far as surgical intervention or leave her alone. Yes, in all honesty I think she's doing remarkably well with literally one functioning arm, but...could she do better? I in no way think you are wrong for feeling we should just teach kids to deal with it, I really don't, but I also think we have a responsibility to teach kids to take responsible risks in life and to not give up. If something can be made better or done easier, there's nothing wrong with that either. Thank you for bringing your thoughts to this forum. It really helps us think about the whole elephant, not just the side we are looking at.

[admin]

I totally agree with the original poster. Let your child live. I feel a child can never have their childhood back and I'm glad mine wasn't spent in therapy and splints. Respect to those who choose surgery, respect to those who don't.

[admin]

I respect everyone's own decision whether it is surgery or no surgery, splinting or no splinting, therapy or no therapy, BUT I LET MY CHILD live. I have given my child the ability TO USE both arms and hands by chosing therapy, surgery and splinting. It WAS MY DECISION. I am proud of my decisions b/c I feel as if I gave her a life back that she deserves! So please understand the fact that chosing therapy or surgery DOES NOT mean that we are not letting out child live normally. In fact, it is completely opposite.
~Krista~

[admin]

I also forgot to mention that when she did have surgery, days of splinting and therapy...she still had a completely normal life. Nothing has taken away her right to live normally. Like I said before, I only helped that fact for her.
~Krista~

[Tanya in NY]

Everyday I think my daughter could have been injured much more severely or even died, but that doesn't change the fact that she was injured and has to live everyday with added difficulties. She is a very happy, well-rounded child. She enjoys therapy and yells out "Kathy's here" everytime her OT comes to the house for therapy. She loves getting into the pool with Allison for aquatics. She has her moments of not wanting to participate, but hey, what 3 years old wouldn't?

What would her arm be like if I had as you suggested, just taught her how to live a one armed life? Well, it would be less than what it is now. She would have an arm that would have atrophied and contracted. Her shoulder joint would be misshapen and eventually dislocated. She wouldn't be able to pick objects up with 2 hands, put her hair in a ponytail, crawl, swing a baseball bat, and who knows what else. She would be having many more difficulties than she is now. Is that better somehow? What is the tradeoff? Is the tradeoff allowing her to be a child? Let me tell you, my daughter has been nothing but a child. She knows no different and loves every moment of every day. Could I forgive myself for allowing her to "be just a child" at the expense of her arm withering away? Never. My job as her Mom is to protect, love, and encourage her. How have I not done that by making the choices of therapy and the ACR surgery? I think I have done the right thing, and for someone to suggest otherwise is very upsetting.

Forgive me for being so blunt, but I am quite upset at the notion that I may have put my child through too much already in the eyes of another who knows nothing of my child and the other children related to this forum. I think that each family turmoils over decisions of therapy or no therapy, surgery or no surgery, taping or no taping, testing or no testing, etc. To lump everyone into one category is an assumption that is harsh and unfair.

This is my own personal opinion, and my goal of this post is not to offend either the original annonymous poster or other posters. It's just my opinion, as strong as it may be.

Best wishes for as much recovery as possible to everyone afflicted with BPI, whether by doing something to help it along or not.

Tanya in NY
Amber's Mom, ROBPI, almost 3 years old

[tcon]

I went to a workshop this summer. I kept saying that it was going to be difficult to get a 2.5 yr old to do all the things that she wanted us to do and her response...if she was diabetic, would you let her not take her insulin? Now i know there is a difference (diabetes left untreated is life-threatening) but the anology is there. We have to do what is right for our children. Just my opinion, not saying what you are feeling is wrong. On the flip side, at the same workshop I was told that there will be regressions as my daughter gets older...For awhile, I thought then why the hell am I working so hard, just to take 2 steps forward and 1 step back. But we continue to plug away.

Also, my daughter has been in therapy since she was 5 days old. AT 3 yrs old she still gets excited when her OT comes over to "play". She wants to know when her younger sister can have the OT come over to play with her. She is 100% adjusted and knows no other way of life than therapy and ROM. She thinks this is the norm. With that said, I am sure there will be points in our life that we will take therapy breaks b/c we need a mental break from this injury.

Good luck in your journey.

[admin]

To the origional poster......yes I do think about forgetting about my daughters arm and getting on with life one armed but it is only a passing thought. While I am less aggressive than most parents are I still have my daughter seen by a team of specialists at least once a year, she has had surgery (at 8 years old ) and of course we do daily exercises. I think balance is good. One can't stick their heads in the sand so to speak or let the injury consume them either. A nice moderate balance.....education ....a mid range of both work for our family!

A reminder to all others that the origional poster was asking for opionions ...........not commenting at all.......just a question.


Good Luck to you,
Lenni