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  • kevin_c86
    Jan 17, 2008
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      Our daughter Juliana is 6yrs old, and is 2 1/2yrs post/op for Moya
      Moya. Boston Childrens Hospital, Dr R.Michael Scott is her surgeon
      there and he is a God send. I agree with Allen, keep faith.
      Juliana has a long road ahead of her as well, she does have
      Neurofibromatosis 1.
      It is absolutely heartbreaking to watch your precious child go
      through any invasive procedure, surgery, disease, and more. Their
      resilience & strength is Life learning to anyone who observes.
      We support you, we will pray for you, your family & care givers.
      Please embrace this connection that we have and allow it to comfort
      you in some way.

      May God's grace bless you, Mary Cave & family

      --- In parentingchildrenwithmoyamoya@yahoogroups.com, Laurie Park
      <sparkln13@...> wrote:
      > Lora,
      > How is Meadow doing?
      > Just know that we have all been through the same heartache and
      that you are not alone. And feel free to pour your heart out any time
      it needs it! I was pretty strong during Samantha's hospital stay. My
      emotional breakdowns occurred (and still do) on days like teacher
      appreciation day when I thank the school nurse for her help and
      attentiveness to Samantha's migraines. A commercial on tv or movie
      can trigger an emotional reaction out of the blue as well.
      > Keep us posted when you can. Our thoughts and prayers are with
      > Laurie
      > P.S. Make sure you get some sleep. Everything looks 10 times
      worse than it really is when you're overtired.
      > Lora <lorabeas@...> wrote:
      > Hi everyone,
      > I am new to the group. I was referred by another MMD parent.
      > My daughter, Meadow, is currently in ICU at Lucile Packard
      > (at Stanford). Dr. Steiberg did her second operation yesterday
      > She had her first EDAS last Tuesday the 8th.
      > I was told that she will remain in ICU again tonight, because some
      > her lab work was abnormal. My daughter also has panhypopituitarism,
      > which makes things a little more complicated. Her sodiums have
      > flucuated, and she has some increased urine output. Also her
      > hematocrit is a little low. Her blood pressures are better today,
      > she is off the IV drip (that keeps it stable.)
      > I hope that everything will stabilize soon. She can't have any
      > foods/liquids until her MRI today. I have been patiently waiting,
      > almost had a meltdown. I have held up so well...but I think I may
      > held everything in too long. My mom went back with Meadow to give
      me a
      > relief. Writing to you all is my relief! I guess getting everything
      > off my chest is relieving. Meadow just looks so pale. It makes my
      > heart ache.
      > Well, I guess I have just poured my heart out! I look forward to
      > meeting others here, it is a scary thing to go through for any one.
      > little Meadow is so strong, she amazes me.
      > Take care,
      > Lora
      > ---------------------------------
      > Never miss a thing. Make Yahoo your homepage.
      > [Non-text portions of this message have been removed]
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