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Need feedback on Veptr rods
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Kaylee
Posted 2013-09-12 9:57 PM (#42086)
Subject: Need feedback on Veptr rods


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Posts: 1

My Niece Kaylee Is 9 in February 2013 she recently became handicapped. She Was Born With Lchad Her Sugar Level Dropped Causing Seizures Which Then Caused Fluid In The Brain And Lack Of Oxygen She Has About 30 % Brain Damage. This Week My Sister Had To Bring Kaylee To The Scoliosis Dr. Kaylee Is At 85 Degree Angle In Her Spine The Dr. Told My Sister That If Nothing Was Done She Can Get To 100 Degree And Start To Have Some Major Issues. So They Are Talked The Veptr Rods We Have Never Heard Of Any Such Thing Until Now. My Sister Is So Scared Because Kaylee Can't Walk Or Talk Anymore. I Guess My Question Would Be If Those That Have Done This Surgery For Their Child Would You Still If Your Child Is Completely Bed Ridden Handicapped? We Have Read All The Material On The Surgery And Still Are So Overwhelmed Because All The Stories Are About Children That Can Tell You If They Hurt And Can Get Up And Walk And Play. We Are In Serious Need Of Advice We Know What Can Happen If Nothing Is Done And We Also Know What She Will Go Through If She Does Do The Surgery. The Hardest Decision A Parent Ever Has To Make Is One Like This. The Doctors Want A Decision In 2 Weeks. I Just Would Like To Have More To Tell My Sister And I Thought It Would Help To Ask Parents That Have Done This For Their Child And If Still Would If The Child's Situation Was Different Like Kaylee..For Our Babies Are All That We Have,To Comfort And Protect Them Is Our Responsibility and I Want My Sister to Feel Confident In Making The Right Decision For Kaylee .. Thank You So Much For Any Input You Have.. Tonya Kaylee's Zia
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Zoes Nana
Posted 2013-09-17 8:10 AM (#42096 - in reply to #42086)
Subject: Re: Need feedback on Veptr rods



Expert

Posts: 3970
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Location: Plymouth, Pennsylvania
DEAR TONYA,
FIRST I AM SO SORRY THAT YOUR FAMILY, ESP YOU NIECE IS GOING THRU THIS..
I CAN TELL YOU FROM EXPERIENCE, I UNDER YOUR QUESTIONS...DO YOU PUT A CHILD WHOS QUALITY OF LIFE IS ALREADY CONCIDERED 'POOR' THRU MORE?....
OUR ANSWER TO THAT QUESTION 13 YEARS AGO WAS YES....WE WANTED EVERYTHING THIS WORLD OFFERED, OFFERED TO ZOE...
WHAT THE 'VEPTRS' WOULD OFFER HER, WAS 'ROOM TO BREATHE'....AND THERE WAS NOTHING MORE FRIGHTENING TO US THAN HER FIGHTING FOR HER BREATH...
BUT THIS IS A DECISION THAT CAN BE MADE ONLY BY YOUR SISTER....LOVE WILL GUIDE HER...SHE WILL MAKE THE DECISION THAT IS RIGHT FOR KAYLEE...
AND WE WILL BE HERE FOR YOUR SUPPORT AND PRAYERS....GOD BLESS...PLEASE KEEP IN TOUCH WITH US...GOD BLESS...JOHANNA
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Leanna
Posted 2013-09-17 12:58 PM (#42097 - in reply to #42086)
Subject: Re: Need feedback on Veptr rods


Veteran

Posts: 138
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Location: GA
Kaylee, that is a big decision. All I can do is share my experience. My son was born with Down syndrome and later diagnosed with CP and autism. We, too, had to make a decision. He cannot tell me when and if he hurts. We decided to go though with the surgery simply because he fights to live. He does not understand. He is 7. I can tell when he hurts and give him pain meds. In our case it was the right decision. He has progressed rapidly and is doing many of the things we were told he would not do. He is now has emerging speech and is reading. He can do so many things, yet I know he will need support for the rest of his life. If you want to talk about this, you are welcome to email me at clohen2410@yahoo.com . This is not an easy decision, but I know your sister will appreciate your support and love through out this.
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