United Brachial Plexus Network, Inc.

Hi, been away from the boards for a while, but I think about you all often. Guess you could say we've been on somewhat of a BPI break, where it hasn't been as big a part of our lives. However, once again it's time to think about surgery. It's going to be much different this time b/c Nicole's other surgeries were all under age 3 and she'll be nearly 8 y.o. this time. Over a year ago, a couple BP specialists recommended possible tendon transfers to be done in about a year to help with finger extension. Nicole can extend her pointer finger only (which basically stays extended all the time). Passively, we can extend her other fingers, but not actively and she can actively grasp although with limited strength. Anyway, we're once again going to get updated opinions and will likely be doing surgery with the next couple of months. I'm looking for any success (or not) experiences anyone can share about this type of surgery. Also, I typically compile a pretty extensive list of pre-surgery ?s and welcome any input in that area as well.

For those who know me here, life is quite a bit different. Nicole really wanted to homeschool, so we're giving it a try this year. It definitely takes more time and patience than I anticipated, but we're figuring it all out. It's nice to have her here with us. She also really enjoys being home with mom and her little brother, who's not so little anymore (2 1/2 y.o).

Amy, if you're reading this, I'd love to chat with you if you wouldn't mind e-mailing me your phone number b/c I know you've got lots of knowledge and experience in this area.

Sorry to be one of those people that comes back around looking for help! Thank you all in advance!

~Tina, Mom to Nicole (7 1/2 y.o. w/LOBPI) & Joshua (2 1/2 y.o. w/NOBPI)

Tina
It is nice to see you here again.
You don't have to apologize you have helped and supported so many people over the years.
You needed a bpi brake and besides the baby is only 2-1/2.
Please give Nicole a big hug for me.
I'm sorry she needs more surgery but I know you will have all the information for her when the time comes.

I hope you get all the information you need.
Kath (robpi/adult)

Hi Tina:
I wondered where you were. Homeschooling, eh? You are more woman than I!!! Was she uncomfortable at school? or she just really wanted to be with you? There have been times when my kids have said they thought it might be cool/interesting/fun/an adventure to have me be their teacher. I have rarely shared their enthusiasm (much as i love them!!)

Sorry to hear of the need for more surgery. Perhaps as part of the homeschooling we could learn about the anatomy of the hand...Nicole is great, and I'm sure she will handle this with aplomb.

Ask your questions, you know others will always learn from you.

Amy will be a great resource.

claudia

Tina,
I agree! You never need to apologize to take a "BPI Break". We all need that at one time or another.
I hope you are having F-u-n Home Schooling Nicole too. I've missed you tho' on the message boards.

I look forward to seeing you all at Camp 2007 next Labor Day weekend.

HUGS, 's
Carolyn J
LOBPI,68 & Proud of it!

Hi, Kath and Claudia. Thanks for your nice notes. About homeschooling, it was a combination of reasons. Nicole really wanted to be home with us. I think it was a bit of an adjustment for her to go to school full days shortly after her little brother was born. Nicole and I had always been so close and done so much together, then she had to share me and spend more time away from me at the same time. Also, she got tired of having to explain about her arm / hand. I'd even gone into the school one day and had a nice time sharing with her classmates (I read "Different Just Like Me" with them, we passed around splints and pictures, and ate hand-shaped cookies that Nicole and I baked & decorated). Yet, at the end of the school year, many kids still didn't get it and accused her of "cheating" at games, etc. She's also very competitive and didn't like how her performance in P.E. compared (the school doesn't emphasize performance, just participation, but it's Nicole's own self-rating). To add to things, I think that some kids don't accept Nicole well due to racial discrimination (based on some things she's told me). If that's not enough reasons to be different, we also have very different religious practices than many people and some kids still asked her to do the pledge or would tell her that she didn't like her country, etc. b/c she didn't salute the flag or thought it was so strange that she didn't participate in holiday celebrations, etc. Anyway, with all that said, she's really happier being at home and is back to her socially outgoing self again. I had noticed that she'd started becoming more withdrawn and less social. Kinda funny b/c one of the first things people say to me when they findout we're h/s'g is, what about the socialization? Well, for Nicole, traditional public school had a negative effect on her socialization. When you h/s, you can also find lots of ways to socialize, not just with a forced group of kids your own age, but with adults and kids of all different ages. I don't know if we'll H/S for all of the school years, but we're going to plan it one year at a time as I continue to pray daily for wisdom and patience. :O) As far as me being more woman than you, hah, it's more like I just didn't know how to say no to my little girl (who, btw, I had wanted to H/S from the start, but hadn't b/c I was overwhelmed with a newborn who didn't sleep much and who nursed all the time). :O)

BTW, I forgot to post my e-mail address for Amy or anyone else who would like to e-mail me. Thanks.

~Tina, bpmom@comcast.net

Hi Tina! Funny you posted, I was just thinking I should email you a real email instead of just the funnies I sent out yesterday. I miss you around here but I understand the need for a break. I have been a little slower to reply recently because school is keeping me so busy! And Finals start this coming week. So every thing is busy busy!

I will email you in the morning, I promise but its 12:30 am and I really need to get some sleep.
I hope all is well!
Big Hugs, and I miss my two cuties from camp, I need some pics of them!
Amy 19 ROBPI from MN

Hi Tina, I was just thinking about you the other day, wondering where you have been. Glad to hear that everything is going well. I hate to hear that Nichole will need another surgery, hope you find the answers that you need.

Tina,
Your sharing of reasons for H'-S'ing Nicole are very validating of her needs. Great going, Mom. I do envy you having that option; I wish I could have H'-S'-d my son Scott, now 35(Learning/Visual disabilities,Non-BPI). He has soared in everything since leaving school. Of course we didn't have computers back then either..he's learned alot on our PC because of just plain curiousity. Yayyy for Wikipedias of all kinds!

HUGS all around.
Carolyn J

Tina, you have mail!
Amy

Amy, (or anyone)
I'm also interested in information on finger extension surgery (for my Amy). What in general could you suggest? From what I've read, muscle transfers are what is usually done. anything else?

Tina,
If you don't mind me asking, what doctor(s) are you seeing for this type of surgery and what types of procedures are they recommending?