United Brachial Plexus Network, Inc.

Hi everyone. Sorry it took so long. Well Lauren had her surgery with Dr. Kozin on January 31st. It took about 7 hours. She had four avulsions and a piece of nerve left in her spine which he "rewired" that root with a nerve out of her arm to control her hand functions to give her the best possible outcome. It was devistating to hear that but I guess I kind of prepared myself for the worse ahead of time. I already knew in my gut that it was going to be pretty bad. So Dr. Kozin took some nerves out of her ribs, neck and arm. So she will have some severe scars, which is the least of my worries, but just to have to look at that for the rest of her life is just a reminder of something that could have been totally avoided.

Well, anyway I really feel Dr. Kozin did everything his soul could possibly do to give Lauren a real chance at having a functional right hand, even if it isn't 100%. Dr. Kozin estimates she will have about a 60% recovery outcome which means she will probably only be able to hold an object and have some flexion and shoulder lifting. But I wont let that get my faith down. I know that the good Lord has great plans for her no matter what her outcome is. She gets her wrapping removed on Tuesday and then she will begin therapy again. Dr. Kozin was great. I have to agree with everyone I spoke with. Dr. Kozin's bed-side manner is awesome. He personally came out to update us on her condition and even made it a point to ask how we were doing. I couldn't have asked for a better surgeon. Not to mention the staff at the hospital, especially in the PICU was so supportive and encouraging. You can tell these professionals are there for all of the right reasons, they love what they do.

I just want to give new parents to this a little words of wisdom. I know its hard to take in much less accept this injury that could have been avoided. It will be hard to deal with, you will be depressed, then guilt will kick in because you will feel like you're not thankful, but trust me you will get through it. Just take it a day at a time. Honestly I have come to learn that this injury that we see as "not normal" really doesn't bother your little one. This is the "norm" for them, they don't know any different. Now of course as they get older, I am going to have to face my little girl and try to explain to her why she doesn't have a fully functional "righty", but Im also going to encourage her that this isn't something that should discourage nor hinder her from anything she wants to do or accomplish in life. She may have to work a little harder or do it a little differently, but that is what's going to make her special and stand out. I hope each and every parent just takes a minute each day and just take a deep breath and know its going to be okay. Honestly thats all we can do. The Lord wouldn't give us anything we couldn't handle. If we couldn't, we wouldn't be here.

Good luck to everyone. Please anyone who has a young baby/or toddlers going through this, please contact me. I would love to compare experiences as well as provide and receive encouragement. Talk to everyone soon.

Hello. We were at Shriners for my daughter's pre-op visit the day your daughter was in surgery. They told us there was a baby having serious surgery so the drs. would be tied up all day... you were in our thoughts even though we didn't know the particulars.

My daughter (she just turned 2 on 2/10) had an open reduction of her R shoulder and 2 tendon transfers on 2/1. She's been a total trooper with the huge cast! We're headed back to Philly next week for cast removal and therapy.

I wish your daughter a smooth recovery and lots of progress!

I'm so glad that all went well and that you walked away from the surgery with your head held high. Now, you are entering one of the hardest periods. The long wait after primary surgery for things to start functioning again. This is tremendously difficult so just know this in advance - the waiting - the counting of the days - the hopefullness -- and then the slow recovery once it all starts coming in - it doesnt' all come in at once, it takes its time. You may see a movement one day and you might not see it again for a month. Just fasten your seatbelts and hold on tight -- but all will be ok. The recovery period - the time that the nerves keep on growing until they are "done" - well it takes a long, long time. I think that Maia's kept on growing (because we saw new movement) up until she was 5 years old.

In the meantime, your daughter will have to recognize that she has an arm so that her brain doesn't forget. I remember doing hand plays with her so that her eyes always saw BOTH of her hands at the same time - always kept that injured hand in her eyesight.

You will both make it through and the results - no matter what they are - no matter where they end up -- will be miraculous.
Because SOMETHING is the absolute miracle - especially when it's coming from NOTHING. Every single slightest and even microscopic movement is miraculous.

This is the time when you need to try to refocus on each incision and in your minds eye visualize the nerves growing in their excited nonsensicle way - they just run and grab and run some more.... not to look at the incisions with hatred and anger and sadness but to look at each incision as "a great miracle happened here" because that truly IS what's happening under there right now. And when your daughter is old enough to ask you about what the scars are about - I hope you can kiss them and tell her that miracles happened underneath there.

This is how one can get through this time period where you wait and wait and wait. Hold on to and keep on adding to your faith Being that Maia is now 12 years old -I can look back now and see myself -- and wow..... I was so angry and so depressed. If I can give any young mother advice, it would be to know for sure that it all works out exactly the way it is intended to work out. And that your attitude greatly affects how your children recover and how they see themselves.

When the first big movement comes in -- I hope you can have a party and celebrate it.
Good luck and big hugs,
francine

WOW what a drum player you have there. i played a keyboard before my injury. i still play it, but i have to figure out a different way to compensate for my fingers not working properly. it is a GREAT finger excercise. i can't feel the keys which makes it difficult to play, but i do it anyway. and it helps a lot.

Just remember; your daughter can do ANYTHING she wants to i constantly think of how wierd it would be to have complete function in both arms... it would be wierd! i was always pushed as a kid to keep trying and to do things as much as possible. i adapted many different ways of doing things, and people are amazed that i do things mostly with one arm... I did karate for 6 years, and got my black belt... i play basketball recreationally, i lift... i can tie my shoes! lol she can do anything...

Thanks for the replies and support. I know God has great plans for her, I just can't wait to see them.

And when your daughter is old enough to ask you about what the scars are about - I hope you can kiss them and tell her that miracles happened underneath there.

I love this. Thank you.