United Brachial Plexus Network, Inc.

Well, JAvier saw Dr. NAth for the first time today. We were told to have Jav's OT do estim on his bicep to check for innervation. Dr. Nath suggested to have another nerve graft to gain bicep movement and also to release underarm contractures. Then use Botox. Of course that is not verbatim, but what I remember. You see, I am ok with BPI as long as Javier is. I don't believe in alot of surgeries and botox etc. He is a happy little boy, smart and inventive. MAny people have had wonderful fulifilling lives with a lot more to deal with. So, to hear that he "should " have another operation and it "should " be done asap is a little heart breaking.He is only 6 months post-primary. I just feel overall that the appointment could have been a little more thorough. I was expecting something different I guess.I am also upset because a family friend died last Saturady in a car accident. I by no means am trying to insult the Doctor or his staff, so please don't jump down my font or start a burning ring of fire.

Just needing to vent, Marlyn

I am so sorry Maryln. Just do what you think is right. Remember that you don't have to take the Dr.'s suggestions, it is all up to you. Do what feels right for you and for Javier. I hope things start to look up for you. I am so sorry to hear about your friend. Was this appointment with Dr. Nath a second opionion? Maybe you should get a 2nd and even a 3rd. Take care of yourself!!

Hi Marlyn, The computer lab closes early today, so I have to make this quick. I haven't been to the msg boards for a month or more....to read or post, until today.

Sleep on this news, and in time, you will know the answer. All those years ago, 21, surgery was not an option for my Jill born severe LOBPI, but I too have never been crazy about surgery. I don't know what I would have done if they had suggeted it. I can only imagine. And as everyone knows.....it is different to imagine and entirely something else to be living it.

I wish you and your family only the best. Pray for wisdom, and then the strength to carry it through. That is exactly what I did all those years ago......I should now, yet today, take my own advice too. Bye Angela

Marlyn -
My heart goes out to you. I'm sure it's difficult to make a decision for your child. But as the others said, only you can know what's going to be right for him. You're a good Mom, otherwise you wouldn't be so torn right now. Take your time and pray for direction; you'll do the right thing!
God Bless!
Cyndi

Marlyn
I sorry to hear you did not get better news.
It must be so hard for you to even think clearly right now. It is so hard when we have to make decisions like this for our children.

As Cindi said pray for direction.

I am so sorry for your loss it is so hard to deal with such a sudden loss of a friend.

Kath adult/obpi

Thanks for the posts. i have calmed down a bit now- I think I hit the boards to soon this afternoon. lol

I really do appreciate everyones support and kind words.

I LOVE UBPN, lol

Marlyn

Marlyn,
Oh, I remember those feelings.....we went to TCH for our primary evaluation and thought they would send us home. Here we are 2000 miles away from home and get told, no, he needs primary. Okay, so we are in Texas lets do it. Schedule surgery for the next morning and then half way through the 10 hours I start to wonder did we do the right thing.....????? Oh boy, well, after primary and Mod, I know we did the right thing. My son too was happy and bubbly and too much when he was little, but I promised myself I would do anything in my power to make him 100 %, although I thought we could never do that. We saw Dr. Nath over the weekend, he was so impressed with my son and said that he would not need any further surgeries unless I wanted the other 10% of the function he is missing.....I said, is that all he is lacking? He said yes......all that worrying for nothing. Go with your gut........that is all you can do. IN MY OPINION, Dr. NAth is Top Notch and would do nothing to hurt your child. Yes, the appointments are sometimes to short, I know. We got 5 minutes when he came to Chicago, but I was thankful for that. If you really needed more time, I know that he would give it to you. Just keep your chin up and make your decisions based on what you feel.
Gayle mom of Brandon ROBPI ~~~age 7

marlyn,
i tried emailing you i had wanted to respond to you, but your email came back as undeliverable. if you email me, I will send you what i tried to email you the first time
elisabeth

Ok, so I am getting the distinct feeling that some people feel like I have made a personal attack against Dr. NAth and his staff. I don't need the emails, and frankly I am not really in the mood.I just had a close friend die, and not to mention ALL of my family in Louisiana. I have seen Dr.Nath's work and talked directly to parents that have taken their kids to him. I AGREE - he does do wonderful work and has given so much to those of you that chose him. He is a very nice man. All I meant was- I WISH THE APPOINTMENT COULD HAVE BEEN A LITTLE LONGER. that's all. I DID NOT say that Dr. Nath was not thorough. I DID not say that JAvier won't see him again, but my family has chosen to take the non- aggressive road. Primary was enough for right now, and WE are ok with that. Maybe JAvier's arm will never ever work, but that's fine. He's fine. I just wish that as a SUPPORT BOARD, we could truly support eachother. Of all the docs that JAvier has seen, I think the pediatrician was my favorite. lol I am not a mean person, not super-sensitive either. SH*T HAPPENS, and we all have our fair share to deal with.

MArlyn

p.s to ALL who responded to my post, thank you for your views and encouraging words.

ANGELA BUTTERFLY- good to hear from you!!

1 more thing- I know the appointment was free and Dr. Nath sees LOTS of patients in 2 days. He gives alot of himself. I thank him for doing these clinics and Cindy for setting them up.


marlyn