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Veptr removal
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DStepp
Posted 2011-03-13 11:27 PM (#40914 - in reply to #40913)
Subject: Re: Veptr removal


Regular

Posts: 78
252525
My son Bradley had Veptr surgery Jan. 18th he is 4 years old. Dr. campbell got for 4 inches from surgery amazing!!!! It has changed his life! He was around 130 degrees now half of that!! He has gained 3 pounds to!! Yes now very vocal, wasnt talking much before surgery just wined!! It has been a long road 7 weeks from surgery he finially took a few steps. He has a new body to relearn everything:( Good luck I hope this helped a little bit:)
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Maggie's Mom
Posted 2011-03-14 8:28 AM (#40915 - in reply to #27339)
Subject: Re: Veptr removal



Elite Veteran

Posts: 833
50010010010025
Location: Chittenden County Vermont
Danette- that is wonderful! Go Bradley!!!
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Rinny
Posted 2012-11-28 11:12 PM (#41629 - in reply to #27339)
Subject: Re: Veptr removal



Member

Posts: 5

Hello everyone,

It’s been a while since I’ve visited the site and wanted to give an update and maybe put some of your fears on the back burner for a while. I had my VEPTR removed just about 3 years ago, without having spinal fusion, and I’ve been really well. I originally had my VEPTR out at the end of 2009 due to unexplainable pain after living with my VEPTR for 18 years. I have had no pain and no plan to have a spinal fusion any time soon. I am not sure about others, but I hope that this may be a viable option for some VEPTR kids reaching the age of possible fusion or removal of the Titanium rib.

I am now 23 and working as an oncology nurse. I have been truly blessed with good fortune and a loving family that has enabled me to move across the country to pursue a new job. With new time on my hands, no longer spent studying for classes, I am interested in getting involved in a VEPTR non-profit. Anyone know of a way I could use my time to help out?

Many of the stories of the VEPTR children posted on this website are truly amazing and I would love to volunteer my time to answering any questions or even just being present for families in need. (Although every case is different.) I also want to give a special thank-you to all of you brave parents.

Happy Holidays!
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josiejean
Posted 2012-11-29 10:59 AM (#41630 - in reply to #41629)
Subject: Re: Veptr removal



Elite Veteran

Posts: 1076
1000252525
Location: Silver Lake, Kansas
what a great update!!! we think Josie is nearing the end of her surgical journey as well. she'll be 13 this next March. her last VEPTR surgery was about 1 1/2 years ago (or has it been 2 1/2 already?). we went in last summer for a one-year follow up and schedule a surgery date, but the dr said there's really no need yet after looking at the xrays cause at this point the rods would just be stretching her top and bottom ribs, but not gaining any benefit from it cause her spine hasn't really grown/gotten longer. so he said we'll just take it a year at a time and see where she's at. Josie is doing fantastic and hasn't had any health problems (due do diagnosis) in many many years.
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Zoes Nana
Posted 2012-11-29 2:43 PM (#41631 - in reply to #41630)
Subject: Re: Veptr removal



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
RINNY, CAN'T THANK YOU ENOUGH...ZOE WILL BE 15, AND SHE IS AT THE END OF THE PROJECT...HAD HER IMPLANTS IN AT 2 AND SHE IS DONE GROWING AT 4'2"...SHE IS NOT HAPPY ABOUT HER HEIGHT. BUT SAYS 'OH WELL'...AND WE ARE JUST HAPPY SHE IS ALIVE...AND OWE IT TO THE 'VEPTR'S..SHE HAS HERS PUT IN BY DR. JOHN EMANS AND DR. CAMPBELL IN BOSTON...SHE IS NOW OVER 1 YEARS SINCE WHAT WAS HER LAST EXPANSION, AND THE THOUGHT IS JUST KEEP HER IN A 'WATCH' 'NO FUSION' AS WAS ONCE THOUGHT...XRAYS JUST SENT UP (WE LIVE IN PA) AND EMANS REPORTED "LOOKS GOOD"...BEST YEAR OF HER LIFE...NO SURGERY ON THE CALENDAR FIRST TIME IN HER LIFE...THANKS YOU SO MUCH RINNY!!!...
SEEMS FACEBOOK HAS TAKEN OVER MOST OF OUR VEPTR TALKS...I MISS THIS BOARD AND WISH MORE WOULD COME BACK...GREAT SEEING A POST FROM YOU SHAWN...GREAT TO HEAR JOSIE IS DOING WELL...ALSO RINNY....PLEASE LOOK US UP ON FACEBOOK...SADLY WE JUST LOST A LITTLE NEW VEPTR YESTERDAY...HIS NAME WAS 'HENRY'...OUR 'VEPTR COMMUNITY IS IN MOURNING' BUT STILL KNOW THIS IS THE ONLY HOPE AND WE MUST GO ON...
GOD BLESS...

http://www.facebook.com/johanna.p.lambert
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Zoes Nana
Posted 2012-11-29 2:44 PM (#41633 - in reply to #41630)
Subject: Re: Veptr removal



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
RINNY, CAN'T THANK YOU ENOUGH...ZOE WILL BE 15, AND SHE IS AT THE END OF THE PROJECT...HAD HER IMPLANTS IN AT 2 AND SHE IS DONE GROWING AT 4'2"...SHE IS NOT HAPPY ABOUT HER HEIGHT. BUT SAYS 'OH WELL'...AND WE ARE JUST HAPPY SHE IS ALIVE...AND OWE IT TO THE 'VEPTR'S..SHE HAS HERS PUT IN BY DR. JOHN EMANS AND DR. CAMPBELL IN BOSTON...SHE IS NOW OVER 1 YEARS SINCE WHAT WAS HER LAST EXPANSION, AND THE THOUGHT IS JUST KEEP HER IN A 'WATCH' 'NO FUSION' AS WAS ONCE THOUGHT...XRAYS JUST SENT UP (WE LIVE IN PA) AND EMANS REPORTED "LOOKS GOOD"...BEST YEAR OF HER LIFE...NO SURGERY ON THE CALENDAR FIRST TIME IN HER LIFE...THANKS YOU SO MUCH RINNY!!!...
SEEMS FACEBOOK HAS TAKEN OVER MOST OF OUR VEPTR TALKS...I MISS THIS BOARD AND WISH MORE WOULD COME BACK...GREAT SEEING A POST FROM YOU SHAWN...GREAT TO HEAR JOSIE IS DOING WELL...ALSO RINNY....PLEASE LOOK US UP ON FACEBOOK...SADLY WE JUST LOST A LITTLE NEW VEPTR YESTERDAY...HIS NAME WAS 'HENRY'...OUR 'VEPTR COMMUNITY IS IN MOURNING' BUT STILL KNOW THIS IS THE ONLY HOPE AND WE MUST GO ON...
GOD BLESS...

http://www.facebook.com/johanna.p.lambert
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Zoes Nana
Posted 2012-11-29 3:04 PM (#41634 - in reply to #41633)
Subject: Re: Veptr removal



Expert

Posts: 3970
200010005001001001001002525
Location: Plymouth, Pennsylvania
RINNY, THIS IS THE FOUNDATION THAT MY DAUGHTER HAS BEEN WORKING ON NOW FOR MANY YEARS...JUST GOT OFF THE GROUND WITHINT THE LAST YEAR AND HAS OPENED APPLICATION FOR FAMILIES FOR HELP...WE NEED ALL THE HELP SPREADING THE WORD THAT WE CAN GET...THOUGHT YOU MIGHT TAKE A LOOK...
http://r2bfoundation.org/

http://www.facebook.com/r2bfoundation?ref=ts&fref=ts
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