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Keanu's brother cleared of HCM (so far)

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SheliRenee Find out more about SheliRenee
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  • Keanu's brother cleared of HCM (so far)

    Hi Everybody -

    Hope things are good all around. We finally got Gavin (Keanu's 4-month-old brother) in to have an echo and EKG. I was told that things look good for him. Kyla and Tanyr, Keanu's sisters, are having an echo on the 21st of this month. Anyway, knowing that, for now, Gavin does not show any signs of an obstruction was wonderful news. We had been a little worried about it.

    On another note, Keanu has qualified for speech therapy and will be fitted for hearing aids soon. He might have a double-wammy working against him... speech delay due to Noonan's Syndrome and a hearing loss in both ears.

    We just keep plugging along.....

    SheliRenee
    Mom of Keanu
    4 years old (will be in March)
    Dx at 2 days old with Biventricular hypertrophy
    Dx at 6 weeks with HOCM
    Dx at 5 months with V-tach
    Dx at 3 with Noonan Syndrome

  • #2
    Re: Keanu's brother cleared of HCM (so far)

    Keanu is really a cute little boy judging from his picture! I am so glad for all of you that things look good so far for Gavin. I will pray that both his sisters are fine as well!

    Rhoda

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    • #3
      Re: Keanu's brother cleared of HCM (so far)

      Hi SheliRenee! Boy, has Keanu's hair gotten darker or is it the picture? I'm glad that for now Gavin is doing great and no signs of HCM. I hope the girls turn out fine too. I didn't know you had gotten a diagnosis of Noonan's. I bet it's a relief to know what's going on so you can deal with it accordingly. Hope to hear from you soon.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: Keanu's brother cleared of HCM (so far)

        Hi SheliRenee,

        I didn't know Keanu was positively diagnosed with Noonan's Syndrome.

        Did the website I told you about help? Tyler's Noonan's Syndrome is only mild. His height (at almost 10 only 52") and heart are about the only negative symptoms he is still contending with. He finally (with the help of occupational therapy) caught up with his fine motor delays. Let me know if I can help. Tyler uses an FM system at school to help him hear clearer. He is deaf in his right ear. We recently had to have tubes put in again because of fluid buildup and loss of hearing in his left ear. He is doing good now. I always worry about losing his hearing since he only has one good ear. I hope Keanu's hearing aids help him.

        Good news on his brother being cleared of HCM.
        Michelle - mom to Krista and Tyler both HCM
        Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
        Tyler surgery: 1/98 myectomy

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