really really stupid question from a LOBPI

[PeggyF]

Gayle...Do you celebrate Chanukah? The Gayle I was emailing with --and talked to on the phone a couple of times (with a beautiful boy child named Brandon with a BPI) is a Jewish; beautiful blond and a wonderfully handsome young man.

If it's not you, I sincerely apologize, but I welcome you "into the fold".

My participarion on the message boards is spurratic (due to having 2 kids, life, etc) but anyone who emails me will eventually get a sincere response when I have a few collective moments to think!

Back in the day when Emma was an infant and there weren't so many parents of OBPI children on message boards (and before trials) .... it was much easier to keep it all straight.
Now, there are so many! Too many! And life has taken a turn toward peer pressures, and little daily strifes that take up a lot of time.
It's not that I don't care about those I've bonded with or that I 'can't remember', so much as it is the 'immediate needs' that have to be met,'
I do remember and I do miss the bonds that were made way back when.
I feel for the new parents that find this site all the time and I appreciate the adults that post here for us and our children's benefit.

THANKS ALL...

Peggy

[brandonsmom]

Mo Peggy, not me. I have been on these boards for along time, under several names because of legal matters. (We were military and we wll know about "BIG BROTHER") We just settled our lawsuit a few years ago, so I went to Brandonsmom and kept it only because sometimes I forget to sign my posts. I learned about this sight from the San Diego Support Group....thanks Cathy and Connie. My message board participation is spuratic also, I have four kids.....so sometimes it is weeks, but so be it. I too am saddened by the growing number of parents coming to this board, it is truly sad, that the doctors do not get it. But also appreciate the adults that post here and help us with the issues are children are having....it makes me feel better. It is not like a doctor would ever tell us that it is BPI related, it is not like any here in Illinois even know. So I just trust those who are adults and responding to my posts. Then I take my son to the doctor and tell them that it is BPI related and they lokk at me all stupid.....oh, well, that is BPI for you !!! Gayle P.S. Peggy, no apology needed.....Gayle

[Kath]

So girls was that a group hug? Can I join in... LOL...
Big bpi hug to you both... I will remember to use two hands this time. I forget to use two hands to hug...

((((((( hug>>>>>> robpi hug.... LOL.....

The doctors have so much to learn about OBPI and it amazes me how many have learned from adult/obpi... I wonder how many admit that they have learned from the adult/obpi they have met?

Kath (adult/robpi)

[brandonsmom]

Sure Kath you can join in, what is better than a group hug? I bet not many would admit they learned from an adult OBPI but I bet many have. I have tried to teach doctors/teachers and the like about OBPI, this year I think I finally suceeded. I have definately walked out of doctors offices/General Practice and Family Doctors/pediatricians and the like that have not tried to learn what an OBPI was or were just plain IGNORANT. I was told by one GP that my son did not have a BPI and that he needed to use him .....what....this was after two years of physical therapy and two surgeries....what a moron......I gave him a piece of my mind,(What I had left back then) and walked out.....without paying the co-pay......he did send me a bill to try and collect either....he must have gotten the picture....GAYLE

[Kath]

Gayle
My injury is global and I have Horner's...
One doctor told me I could not have had Erb's Palsy or some mild form of it.
My family doctor called him up and used words he never said before and that was 30 years ago... LOL...

I am a real pain now because if they want to treat me they need to be educated. I tell them more than they want to know because I don't want anyone making mistakes on me anymore!

They probably just chalk it up to getting older... LOL..

Kath (robpi/adult)

[brandonsmom]

Peggy,
I am feeling really dumb now....I am cleaning my office, boy what a mess and going through old papers so that we can shred and get rid of some junk. Anyway, I was going through my son's BPI notebook and found a e-mail that I had written to you and you have written back. I don't know how many times, because after a while I stopped so that the attorneys couldn't ask me for it. How old is Emma now?

Gayle

[brandonsmom]

Kath, Pardon my question but what is a global injury. I have heard that word a few times.....but never wanted to ask....you guys are easier to talk to over here that on the general boards....GAYLE

[Kath]

Gayle
I did not realize I had a global injury until one of the Mom's from the UK explained it to me in Italy.

My injury involves C4, c5, c6,c7,c8 & T1

I always knew I had a problem with my diaphragm but until I had some breathing tests a few years ago was not sure.
I think what that means is that all of the nerves are involved. That is what showed up on my emg.... C4 we knew from my history and now breathing tests.
UGH... I use to think I had a mild injury but that was because I never met anyone with it. I also did not have all the medical testing I have had over the last 5 years. I did however, have a strong medical history because my mother always explained what I could and could not do at certain times and how they worked on me. She was very open and honest with me except she never did admit that there would be something I could not do... LOL...

Kath (robpi/adult)

[admin]

Thank you for that piece of information I used to know what nerves were involved with Brandon's injury but I chose to forget it I think. I know his diaphram is involved only because when he had nerve grafting at 7 months Dr. Nath told us that he left that nerve alone because it was too involved and he didn't want to puncture the diaphram....Gayle

[PeggyF]

Gayle,

Emma is 9 years old now.
Don't worry about the confusion--I'm confused too!
I know it's hard to keep up with everyone, especially with the growing numbers on the message boards.
I may have confused you with another person, but I do remember Gayle and Brandon.
Anyway, all the best to you and your family )

Peggy