Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Glad to hear that she is adjusting to the halo and that the rib hump is looking so much better. That is great news. I hope you see some fantastic correction with the x-rays. I am sorry about the myopathy. It sounds like you will keep her as active as possible though. Keep us posted when you can! Noelle (12-2-01)Ian (8-15-04) Kylie Update by Hi all,It's been awhile since I updated you on Kylie. She is doing great! She'sbeen in her halo now for about 2 1/2 weeks. Her rib hump is half of whatit use to be and they are still adding weights and she still has 6 moreweeks in it. Tuesday, we also got her muscle biopsy results back. Shedoes have myopathy. This means that the muscle tone she has now, is whatshe'll have the rest of her life. She also must remain as active aspossible so her muscles wont atrophy. If she looses what she has, shewont get them back.I think next week Kylie will have her first x-rays since she's been in herhalo. I can't wait to see how much correction she has so far. I will letyou all know.Later, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 , Thanks so much for the update. I'm glad Kylie is doing well in the halo. Hopefully the xrays next week will show good improvements. I'm torn between feeling relief and sadness about the official myopathy diagnosis. Will they put Kylie in official physical therapy for a long time to help her learn how to use the muscles she has? How is SHE feeling about the diagnosis? How are YOU doing? We'll be back to visit on Tuesday. Is that okay? I'll call first to make sure. Take care! 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 February 26, 2006 Report Share Posted February 26, 2006 - I am happy to hear Kylie is doing well and her spirits are doing well. I am sorry to hear about the results of her biopsy. This was probably a bitter-sweet revelation for you. Does having something concrete to work with now give you additional opportunites for more success in the future? Madison and I are thinking about you guys everyday. Please, let me know if there is anything I can do for you guys. Jenheather@... wrote: Hi all,It's been awhile since I updated you on Kylie. She is doing great! She'sbeen in her halo now for about 2 1/2 weeks. Her rib hump is half of whatit use to be and they are still adding weights and she still has 6 moreweeks in it. Tuesday, we also got her muscle biopsy results back. Shedoes have myopathy. This means that the muscle tone she has now, is whatshe'll have the rest of her life. She also must remain as active aspossible so her muscles wont atrophy. If she looses what she has, shewont get them back.I think next week Kylie will have her first x-rays since she's been in herhalo. I can't wait to see how much correction she has so far. I will letyou all know.Later, Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
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