United Brachial Plexus Network, Inc.

Hi everyone,
It has been a long time since I have posted, I see that there are so many new parents. Just a quick question. Rain is going to be having the Ilizarov bone lengthening procedure done in June. Just wanting any information that anyone can offer regarding the procedure, recovery afterwards, and what type clothing will she need? We are having the humerus lengthened first and then the forearm. I know that the brace is rather bulky looking so wondering what clothing I need to purchase for her. Any info you have will be helpful and appreciated. Thanks in advance,

DeShawn

Go to search fourm look up Jameson he had it done and his mom posted about it and answered alot of my question.
How old is Rain and who is doing the surgery if you don't mind my asking??? I have looked into it for my son Frankie but doctors said it would only make things harder on him having a longer arm and very weak muscles
Mare

Oh DeShawn,I know how hard this decision has had to be for you. I am so sorry to hear Rain is having another surgery. I know nothing about it for our kids. I have seen it on adult patients in the hospital where I work and it appears very cumbersome and uncomfortable. Will Dr. Davino be doing this? What is the recovery period for it? What are the estimated results?

Again, I am sorry to hear Rain has to do this yet again.

My son is 17 will be 18 in June. He has done magnificantly well. I can't say enough how impressed I am with him. he has had hardly any pain..((Because of the paralysis??))

How old is your daughter? Our doctor told us he will not do forearm lengthening because it is a nightmare(his words)

Jameson has the italian method and the fixator isn't very bulky at all...it kind of sticks out but he has managed fine and has managed to work just fine(he did car detailing)....He recently quit his job though because DES told us he would lose benefits if he earned too much..... sheez...What a mess.
He is actually out to length now and just has to wait for the bone to harden now. The doc thinks it will be July sometime. I am really happy with our doctor. He has doen good for us.
I will try to figure out how to send you pictures of his fixator and give you info if I can. You can e-mail me at tessie258@yahoo.com
I haven't checked my mail at that address yet but I will try to remember to do it more often....I currently have a foster child age 9 months so she keeps me hopping!
Teresa

http://i40.photobucket.com/albums/e213/ ... rayliz.jpg

http://i40.photobucket.com/albums/e213/ ... loseup.jpg

http://i40.photobucket.com/albums/e213/ ... nna005.jpg

http://i40.photobucket.com/albums/e213/ ... stxray.jpg

I need to take some pics right now because he is looking so good right now...I just haven't had a chance.

The last picture is his most recent x-ray....he will have another one next week.
T.

WOW, that last xray looks pretty amazing! I have to admit, it doesn't look nearly as awkward as the ones I have seen, but then again I have only seen lower extremeties. Didn't one of the adults on here have this done a few years ago? rachel casa maybe? sorry if I have the name wrong. But again, his xray looks amazing.

Tessie,

WOW, that's amazing!

Joanie

Teresa
So glad Jameson is doing great I wanted to ask you, after the bone was lengthened if he has any trouble getting his hand to his mouth The doctor we saw said since frankie had problems doing this now it would make it impossible later because it would have a greater distance. Mare

Actually this also came up for Jameson.....He can't reach his mouth or nose with his effected hand and the doctor said it will make it even further away and Jameson's answer was (typical teenager) I don't pick my nose with that hand anyway so I'm going for it!!

He is actually pretty weak right now while he has the lizzie on. He can't do as much as he used to and can't really lift it very high. The doc said that will go away after the fixator comes off and Jameson does some working out....he is very stiff now and the weight of the bar does cause him to not be able to lift his arm up past his chest level.....he is managing though...and he feels confident when he is finished he will get his movement back.

The biggest reason he went through with the fixator was because he wanted to be able to reach the stock of his shotgun better...He is an avid shooter and wants to go into some kind of law inforcement or ballistics type work.
We will see.....there is a long pause after this because we just don't know what he will be able to do....time will tell.

He sounds just like frankie he is so into his guns (air soft and paintball for now,how they work the differences and all that stuff he wants to do ballistic. He can tell you anything about any gun even the really old ones. He doesn't get to shoot them much, he likes to just takes them apart and puts them back together I call him a tinkerer. Mare