Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hi, I wanted to give you all an update on Kylie since it's been awhile. First of all, she is doing very well. She is enjoying her 3rd Halo completely!!! Second, your not going to believe this one, on Wednesday she was approved for the VEPTR!!!!!! We never thought this day would come and it couldn't have come at a better time. It had been mentioned that casts were not an option anymore and that this current halo traction was probably her last. Kylie will have her VEPTR surgery on April 3rd. She will be transferred, in her halo, to Primary Children's that morning. Dr. Santora, her doctor since birth, will assist Dr. with the surgery. After 2-4 days, she will be transferred back to Shriner's to finish recovering. Her 6 mon. lenghtenings will be done at Shriner's. Kylie understands how important this surgery is for her. She is very happy to be done with casts and braces. She has worn them for 8 years. She is though, very upset about no more Halos. Well, that's about all for now. I will keep you update. Later, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 Hey ! I'm so happy for you all! Please give Kylie lots of hugs from her friend Siobhan - This must be a little scary for you, but it will be for the best - You are in the best hands with the doctor you know and trust, plus Dr too. Hopefully, you and Kylie will be up to visiting with us in May when Siobhan gets her implants? Whenever you get a sec, please email me your cell phone number again, I'd love to chat.... Jacki > > Thanks for the update ! Woo-Hoo for Kylie! > I'm glad to hear there is hope for her now. I know > how worried you've been about what's next (basically > nothing). It was great to talk to you on the phone! > We'll be back to visit on the 30th. Kylie will be > ready for the shopping spree for a new wardrobe!!! > Cool for Kylie! > > Carmell > > > > mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2006 Report Share Posted March 19, 2006 - WHAT GREAT NEWS!!!!!!! We are so happy this is such grat news for you guys...I still find it amazing that she will miss the Halos... Hope to hear for you guys soon are you in the halos till the surgery? Wonderful .....just in time for the summer..it must of been all the vitiams in the Carnation breakfast drinks you guys kept giving them ...hehe -- In infantile scoliosis treatment , Lether <nlether@...> wrote: > > Hi, > > I wanted to give you all an update on Kylie since it's > been awhile. First of all, she is doing very well. > She is enjoying her 3rd Halo completely!!! Second, > your not going to believe this one, on Wednesday she > was approved for the VEPTR!!!!!! We never thought > this day would come and it couldn't have come at a > better time. It had been mentioned that casts were > not an option anymore and that this current halo > traction was probably her last. > > Kylie will have her VEPTR surgery on April 3rd. She > will be transferred, in her halo, to Primary > Children's that morning. Dr. Santora, her doctor > since birth, will assist Dr. with the > surgery. After 2-4 days, she will be transferred back > to Shriner's to finish recovering. Her 6 mon. > lenghtenings will be done at Shriner's. > > Kylie understands how important this surgery is for > her. She is very happy to be done with casts and > braces. She has worn them for 8 years. She is though, > very upset about no more Halos. > > > Well, that's about all for now. I will keep you > update. > > Later, > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 , We are so sorry to hear about all the complications Kylie is having, and yet are so impressed with your ingenuity and her spirit. Everytime I see the little monkey puppet Nadia made with Kylie at Shriners SLC, I think of you. Good luck with everything and thanks for keeping us all in the loop! xo Abigail and Nadia --------------------------------- Cheap Talk? Check out Messenger's low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Hi, As you know, Kylie has been at Shriner's Hospital in SLC since Jan. 8th with her 4th Halo traction. Her upper spine and neck has been completely straightened. We've had a bit of changes in our original plans. Kylie was suppose to have her Halo removed, VEPTR expanded and then go into a brace with neck support on Feb. 8th. Didn't happen! After re evaluating the plan, her Dr.'s felt this was not going to hold her long at all. We came up with a different plan that will hold the correction longer but not much. They are keeping her Halo on for about 2-3 more weeks, on Feb. 8th, they tried moving her VEPTR up to get more of a hold on her kyphosis but was unable to get it to attach due to too much kyphosis still, the right side immediately popped off and broke the rib. She is doing great for just going through all of that. She was up the next day, on the go all day with only one dose of Motrin. After 2-3 weeks of staying in the Halo traction to hold her as she heals, Kylie's dream will come true. She gets to go home with her Halo still on! Her Halo will be transfered on a brace (a Halo brace) holding her neck in traction for about 4-6 more weeks, then it will come off and she will then go into the brace with neck support. We only have one more option we can try before she has no choice but to undergo a neck down fusion. Unless something else is discovered soon, once Kylie's upper spine and neck collapses again, they will then put her in Halo #5 then do a 2 1/2 inch fusion of her kyphosis, leave her VEPTR in, put her into the Halo brace again until the fusion is healed. She should then be able to reach the age of 15 or 16 before undergoing a full fusion. Kylie has undergone every treatment out there to avoid a spinal fusion, most she has done many times. Her Dr.'s and us are not ready to give in to her kypho-scoliosis. We will all continue looking into anyway possible to hold off fusing her from the neck down, which is how she will have to be fused, due to her muscle myopathy. I will let you all know how things go. ________________________________________________________________________________\ ____ Bored stiff? Loosen up... Download and play hundreds of games for free on Games. http://games./games/front Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Wow . I can't believe how much you both have had to endure. I can only begin to imagine. I've been thinking about you both a lot and I wanted to tell you how nice it was to see you again when Owen and I were there for his last brace. It always helps to see a familiar face when staying at the hospital. I pray that this option holds her and you can postpone fusion until she has had more time to grow. But whatever may happen, you can take comfort in knowing that you have done an outrageous job of doing everything you can to help her. You deserve an enormous pat on the back and a huge Worlds Best Mother award. You and kylie both are an inspiration to us all. I wish you the best of luck and perhaps we will see you on our next visit (although hopefully not for your sake!) We go April 15. Best to you both & Owen > > Hi, > > As you know, Kylie has been at Shriner's Hospital > in SLC since Jan. 8th with her 4th Halo traction. Her > upper spine and neck has been completely straightened. > We've had a bit of changes in our original plans. > Kylie was suppose to have her Halo removed, VEPTR > expanded and then go into a brace with neck support on > Feb. 8th. Didn't happen! After re evaluating the > plan, her Dr.'s felt this was not going to hold her > long at all. We came up with a different plan that > will hold the correction longer but not much. They > are keeping her Halo on for about 2-3 more weeks, on > Feb. 8th, they tried moving her VEPTR up to get more > of a hold on her kyphosis but was unable to get it to > attach due to too much kyphosis still, the right side > immediately popped off and broke the rib. She is > doing great for just going through all of that. She > was up the next day, on the go all day with only one > dose of Motrin. After 2-3 weeks of staying in the > Halo traction to hold her as she heals, Kylie's dream > will come true. She gets to go home with her Halo > still on! Her Halo will be transfered on a brace (a > Halo brace) holding her neck in traction for about 4-6 > more weeks, then it will come off and she will then go > into the brace with neck support. > > We only have one more option we can try before > she has no choice but to undergo a neck down fusion. > Unless something else is discovered soon, once Kylie's > upper spine and neck collapses again, they will then > put her in Halo #5 then do a 2 1/2 inch fusion of her > kyphosis, leave her VEPTR in, put her into the Halo > brace again until the fusion is healed. She should > then be able to reach the age of 15 or 16 before > undergoing a full fusion. > > Kylie has undergone every treatment out there to > avoid a spinal fusion, most she has done many times. > Her Dr.'s and us are not ready to give in to her > kypho-scoliosis. We will all continue looking into > anyway possible to hold off fusing her from the neck > down, which is how she will have to be fused, due to > her muscle myopathy. > > I will let you all know how things go. > > > > > > > ________________________________________________________________________________\ ____ > Bored stiff? Loosen up... > Download and play hundreds of games for free on Games. > http://games./games/front > Quote Link to comment Share on other sites More sharing options...
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