I would like to talk with parents who...

[Kathleen M]

Gee I hope Brit is smarter that I was... LOL... I use to tell my brother that I worked so hard as a kid helping that I felt like Cinderella! ...LOL... I think that is funny now that I understand.

It took me 60 years to figure out why I always had to do certain things and my older sister did not. Boy am I slow. As I grew older I really resented the fact that I did all the work then came the dawn... LOL... My Mom did not have to nag me to move she made me work instead. I thought I was a grown up because I could do many things my peers were not allowed to do... funny how it looks from a child's eyes....

Get two poles and put them in the yard and have the girls hang things on it. Just high enough that Brit has to reach up and teach her to hang things on the line great exercise I only refused to hang out underwear... LOL..

Kath

[CW1992]

Thanks Kath - great idea with the poles. Actually I think Brittney would LOVE to hang out her new underwear - now that she's "blooming" and all...Chip would be pulling everything off of the line!:) I think I'll try it and see how it goes though - thanks.

[Lenni]

Hi there my daughter Ashley,7 yrs old, has had no surgeries to date. Like other's surgery was not as known when she was a babe, so none were offered. PT once a week until age 5 and hydro therapy once a week until age 3. Overall progress is OK, she has a elbow contracture, hand turns inward at rest, she cannot straighten her arm at her side, or put it out as in areoplane, she can lift her arm to just about shoulder level. Last Year she was scheduled for a muscle transfer surgery but it was discovered at pre op that the muscle to be transfered was too weak and would leave her with no ability to put her hand at waist level or behind her back.

We have always encouraged Ashley to participate in everything and have never told her she cannot do something because of her arm. Today she plays piano for finger therapy and her own enjoyment. She started out with week fingers and wrists, she has improved a lot and continues to do so. If I could wish her one thing it would be to minimize the elbow contrature.


I suspect Ashley may have a bilateral injury and we will be having this checked out at her appointment with the specialists in March at BCCH. I will update after the appointment.


I hope this is helpful, please feel free to ask more questions if you think I could be of help.

Respectfuly,

Lenni Porter

[francine]

Kathleen!!! What an incredible feeling this must be for you to realize that all the things you hated so muchh when you were younger had so much value and that your mother just KNEW to do all this with you without doctors telling her or anything. What a smart woman your mom was! I wonder if you sat down and wrote all the things you did as a child how long that list would be.... wow.

btw - I remember ironing pillowcases and hankies and bed sheets.... that's how I learned how to iron (and now I NEVER iron cuz I wear all cotton knit..lol lol)

-francine

[admin]

Thanks so much for all the insightful replies. It really helps to hear how things are done with other families, especially those who seem to put so much effort into "family time" that's also wonderful therapy! Jess

[Jess]

Also thanks so much to Christy. It helps to know that there are some bpi kids out there who continue to improve without surgical intervention. I often get discouraged when my fellow "no surgeries to date"ians end up needing surgeries! Sometimes I think that even the milder injuries (such a relative term) are having difficulty escaping the operating rooms! Anywhoo, it helps to hear that some do get those blessings!

We'll continue to keep up our hard work in hopes have having a happy healthy surgery-free "bloomer" like your dd someday! I'm going to email you personally also, because I'd like to keep your addy around if you don't mind!

Thanks again, Jess