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  • the latest on khyler

    hey everyone
    the pulmoligist nurse called me monday to say theat khyler has very little restriction on his lungs and at ther worst they would have to use a mask that forces oxygen into hi lungs during surgery.....so thats great news they had another spinal conference metting on wednesday and they are all going to go over khy's results and get back to me with the results hopefully by friday..........so we should know something soon. im so glad we are on the right track now and i just love cincinnatti childrens thank you guys so much for being there and pointing me in a better direction
    Corina

  • #2
    corina,

    i'm so glad that things are heading in the right direction for khyler. i'm also pleased to hear that you are being treated better with better options for your son. please keep us updated with absolutely any news! i was a bit worried when you hadn't posted in awhile, but i assumed that you guys had been busy and didn't want to bother you!

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

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    • #3
      Corina - I'm so happy to hear things are moving in the right direction for your little man. Cincy sounds like a great place for him. Keep us posted on the decisions.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        Cincinnati Children's Hospital

        Corina,
        We took our baby to see Dr. Durrani in Cincinnati. My son has kyphoscoliosis but his kyphosis is more serious than his scoliosis. He also has rotation
        I was reading all your postings and I cried. I saw myself in a mirror.
        My family and I are deciding what to do. Fusing will make his torso shorter but, at the same time, growth rods have been used only once or twice in babies with kyphosis. They are often used for scoliosis but not for kyphosis. My baby has a 50* kyphotic curve or maybe a little more but it is progressing really fast. Please, e-mail me if you want to share our experiences with the hospital.
        Try to find out how many degrees of kyphosis your child has. When the kyphosis is severe, (more than 45*) everything changes and the treatment cannot be the same since kyphosis can cause paralysis. I wish I could give more details but the scoliosis of my child is not so bad (maybe 26*). I really don't know much about scoliosis, but I do know about kyphosis and think you have to find the degrees. Then you have to ask what effects any treatment they recommend will have on your child's kyphosis.
        The treatment for kyphosis right now is fusing with or without decompression (taking preassure off the spinal cord), depending on how compromised the spinal cord is. Dr. Durrani is, maybe, the only one trying to use growth rods to treat kyphosis. Good luck for your child and take care because he needs you. Please, e-mail and keep me informed. My e-mail:
        congenitalkyphosis@yahoo.com

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