The deformities of the bones and muscles coming from slow innervation and contractures, along with other things (this is my understanding of it) don't allow for normal growth always. It is just part of our worlds here. For some it isn't to noticable, others it is more severe. Learn how to sew, cut one sleeve a little shorter and hem back up--or learn to roll both sleeves in the exact same format so that you can't tell one is rolled more than the other. And bib pants--they slide off the shoulder most of the time or irritate their necks. katie loves them in some ways--but hates them slidig down, falling all the way off.
There are many more side roads to this new life you have begun. Thank goodness you are willing to walk it with your little girl, she is going to need you. Keep researching, sharing, asking questions. we'll be here.
shortened limb
Re: shortened limb
Christy,
My name is Wendy. I have a three year old son with right OBPI. Your reply to "shortened limb" was full of compassion. You mentioned there were going to be "many more side roads" for this parent. Could you elaborate more on what else us parents can expect. We've just been told Jack will have a shortened limb. Osh Kosh overalls do slip off is shoulders too. But he loves the cute designs on them so he wears them anyway. We too, have a daughter named Katie.
Anyway, I'm babbling, I'd love to learn any insight from you if you have time to share.
Hope to hear back from you,
Wendy awhayes@sprint.ca
My name is Wendy. I have a three year old son with right OBPI. Your reply to "shortened limb" was full of compassion. You mentioned there were going to be "many more side roads" for this parent. Could you elaborate more on what else us parents can expect. We've just been told Jack will have a shortened limb. Osh Kosh overalls do slip off is shoulders too. But he loves the cute designs on them so he wears them anyway. We too, have a daughter named Katie.
Anyway, I'm babbling, I'd love to learn any insight from you if you have time to share.
Hope to hear back from you,
Wendy awhayes@sprint.ca
Re: shortened limb
Hi All
My arm is about 3". My mother took out the shoulder and shortened it and the sleeve too...
But she could sew... Now I roll up my sleeves...
It can be so annoying when I try on jackets etc.. but I am use to it. I had my wedding gown made to fit perfect... I was so tired of things not fitting...
Last year my daughter had to wear it in a fashion show... She put her arm in and whined... this sleeve is so tight!!..next -- moooom the back is tighter on this side!!!!... then we both had a fit of laughing... she never realized the difference and I forgot ....
It can be annoying at times... but that is the way it is... not tragic...
One of the girls on the adult/obpi message board posted about giving our clothes to charity... what must they think when one arm is shorter... I never thought of it.. so please don't worry so much about it.... just do the stretching and roms and help the kids to move as much as possible...
one hand is a tiny bit smaller too...
it is more the circulation in the arm that bothers me..it gets soo cold especially when I sleep... or even typing now...
Also my pincers work better then the ring and pinkie but I can type with both hands and I touch type.
Hope this helps with your fears...
Kath
My arm is about 3". My mother took out the shoulder and shortened it and the sleeve too...
But she could sew... Now I roll up my sleeves...
It can be so annoying when I try on jackets etc.. but I am use to it. I had my wedding gown made to fit perfect... I was so tired of things not fitting...
Last year my daughter had to wear it in a fashion show... She put her arm in and whined... this sleeve is so tight!!..next -- moooom the back is tighter on this side!!!!... then we both had a fit of laughing... she never realized the difference and I forgot ....
It can be annoying at times... but that is the way it is... not tragic...
One of the girls on the adult/obpi message board posted about giving our clothes to charity... what must they think when one arm is shorter... I never thought of it.. so please don't worry so much about it.... just do the stretching and roms and help the kids to move as much as possible...
one hand is a tiny bit smaller too...
it is more the circulation in the arm that bothers me..it gets soo cold especially when I sleep... or even typing now...
Also my pincers work better then the ring and pinkie but I can type with both hands and I touch type.
Hope this helps with your fears...
Kath
Re: shortened limb
My daughter is starting to show differences in her right arm then left. She has R OBPI. I got told it was due to the lack of muscle usage around the shoulder blade. Her orthpedic doctor told us this. Physical therapy helps out alot. If your daughter is old enough, stick her on her stomach with her right arm bentin front of her chest(she is applying pressure to the muscles in her arm plus in the back of her shoulder). That is all I can tell you now b/c my daughter is almost 6 months old. Good luck and hope this helps!
Tracey
Tracey
Re: shortened limb
Wendy,
We could all probably list the things that evolve out of this injury - but I don't know what the right thing to do is.... you see all the kids are so different - different things happen to different kids, some more, some less, some none. If I list the possibilities - you will be predisposed to being more negative about this or depressed ?
So how does one answer this question?
I guess what I'd like to say is that the best thing you can do for your child is to get a good brachial plexus specialist and a good OT & PT. Between the three of them, you'll be able to navigate whatever road is placed in front of you and your child.
My daughter's OT said something to me one day when I was so upset about Maia's issues and delays... she said "don't worry Francine, if Maia can't do something then we will teach her how to do it, if she still can't do it then we will teach her how to adapt, and if she still can't do it, then we will give her the physical tools to adapt" (there are wonderful tools out there in the catalogs for people with special needs).
Then I saw a show on TV about incredible people - there was as man with no arms who learned how to drive with his feet. It was just amazing. Seeing that gave me a lot of hope for Maia. And that's why I have never stopped her from eating grapes with her feet! (LOL) (last week it was a sandwich.... dont' worry she uses a wet wipe on her feet!)
I don't know if this helped at all....
-francine
We could all probably list the things that evolve out of this injury - but I don't know what the right thing to do is.... you see all the kids are so different - different things happen to different kids, some more, some less, some none. If I list the possibilities - you will be predisposed to being more negative about this or depressed ?
So how does one answer this question?
I guess what I'd like to say is that the best thing you can do for your child is to get a good brachial plexus specialist and a good OT & PT. Between the three of them, you'll be able to navigate whatever road is placed in front of you and your child.
My daughter's OT said something to me one day when I was so upset about Maia's issues and delays... she said "don't worry Francine, if Maia can't do something then we will teach her how to do it, if she still can't do it then we will teach her how to adapt, and if she still can't do it, then we will give her the physical tools to adapt" (there are wonderful tools out there in the catalogs for people with special needs).
Then I saw a show on TV about incredible people - there was as man with no arms who learned how to drive with his feet. It was just amazing. Seeing that gave me a lot of hope for Maia. And that's why I have never stopped her from eating grapes with her feet! (LOL) (last week it was a sandwich.... dont' worry she uses a wet wipe on her feet!)
I don't know if this helped at all....
-francine
Re: shortened limb
Fran, - wow! I know a guy who didn't have any arms and could drive with his feet! He lived in our town in Illinois when I was growing up. He also went to school, could write with his toes - and do about anything. I remember him always driving through town 'riding around' with a car full of his friends. Do you know the guys name or where he was from? (sorry to get off of the post subject....) Christy