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Re: [Parenting Children with Moyamoya] My daughter's EDAS yesterday

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  • Laurie Park
    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
    Message 1 of 9 , Jan 17, 2008
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      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 you.
      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 Children's
      (at Stanford). Dr. Steiberg did her second operation yesterday (left).
      She had her first EDAS last Tuesday the 8th.

      I was told that she will remain in ICU again tonight, because some of
      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, and
      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, but
      almost had a meltdown. I have held up so well...but I think I may have
      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. My
      little Meadow is so strong, she amazes me.

      Take care,
      Lora






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    • kevin_c86
      Lora, 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
      Message 2 of 9 , Jan 17, 2008
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        Lora,

        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
        you.
        > 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
        Children's
        > (at Stanford). Dr. Steiberg did her second operation yesterday
        (left).
        > She had her first EDAS last Tuesday the 8th.
        >
        > I was told that she will remain in ICU again tonight, because some
        of
        > 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,
        and
        > 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,
        but
        > almost had a meltdown. I have held up so well...but I think I may
        have
        > 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.
        My
        > 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]
        >
      • lora beasley
        Meadow has moved out of ICU to a regular floor this evening. She is doing really well, and even seems playful today. She had her CVL removed this morning.
        Message 3 of 9 , Jan 17, 2008
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          Meadow has moved out of ICU to a regular floor this evening. She is doing really well, and even seems playful today. She had her CVL removed this morning. There is even talk that if she continues doing well, she may be out in a day or 2. Yay! She seems so much happier since we have come to the regular floor....more freedom, less wires and tubes mangled all around her.
          I feel much better today as well.
          Lora



          To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: sparkln13@...: Thu, 17 Jan 2008 13:34:46 -0800Subject: Re: [Parenting Children with Moyamoya] My daughter's EDAS yesterday




          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 you. LaurieP.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 Children's (at Stanford). Dr. Steiberg did her second operation yesterday (left). She had her first EDAS last Tuesday the 8th. I was told that she will remain in ICU again tonight, because some of 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, and 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, but almost had a meltdown. I have held up so well...but I think I may have 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. My 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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        • lora beasley
          Thank you Jane. : ) To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: ginger090177@yahoo.comDate: Thu, 17 Jan 2008 14:37:39 +0000Subject: Re: [Parenting
          Message 4 of 9 , Jan 17, 2008
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            Thank you Jane. : )


            To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: ginger090177@...: Thu, 17 Jan 2008 14:37:39 +0000Subject: Re: [Parenting Children with Moyamoya] My daughter's EDAS yesterday




            Hello Lora My names Jane. My daughter Chloe is 9 she was diagnosed with Moya Moya aged about 1. She has had 2 lots of surgery. Im from England but im sure its the same procedure. I am thinking of you, no one unless they have been through this can begin to imagine what its like, i look back and wonder how i coped, i guess we just do. We are strong just like our little ones. If you get chance let us know how she is doing. Glad you have come to the group it was a godsent to me when Chloe was first diagnosed.Thinking of you and Meadow (ps what a lovely name)Jane xLora <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 Children's (at Stanford). Dr. Steiberg did her second operation yesterday (left). She had her first EDAS last Tuesday the 8th. I was told that she will remain in ICU again tonight, because some of 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, and 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, but almost had a meltdown. I have held up so well...but I think I may have 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. My little Meadow is so strong, she amazes me. Take care, Lora---------------------------------Sent from Yahoo! - a smarter inbox.[Non-text portions of this message have been removed]






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          • lora beasley
            Hi Allen, My daughter Meadow is 3 yrs. She had 2 strokes at 7 months old, and now has right hemiparesis. She has come a long way with PT/OT. She still does not
            Message 5 of 9 , Jan 17, 2008
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              Hi Allen,
              My daughter Meadow is 3 yrs. She had 2 strokes at 7 months old, and now has right hemiparesis. She has come a long way with PT/OT. She still does not walk, or crawl, but we are hopeful. I think she has the strength in her legs, but her upper right side/trunk and arm/hand are weak.
              Meadow's moyamoya was undiagnosed all this time, in spite of her strokes. I am very thankful for Dr. Steinberg and his team. Also I thank Daphne's Story on DHC. If it weren't for me questioning Meadow and Daphne's familiar stories...I may have never heard about this condition.
              Take care,
              Lora


              To: parentingchildrenwithmoyamoya@yahoogroups.comFrom: akarczmarek@...: Thu, 17 Jan 2008 05:29:12 -0800Subject: Re: [Parenting Children with Moyamoya] My daughter's EDAS yesterday




              Lora,My son had his episodes when he was 5 years old. He had two EDAS surgeries at Children's in DC. It's amazing how fast kids heal. He is 13 now and has not shown signs of relapse. These are the events in life that make you sit back and remember to cherish each moment you experience. Jon had lost the use of his entire left side, arm and leg, at one point. Thru the grace of God, we believe that he has been 100% healed. He continues to play baseball at a highly competitive level. I will keep Meadow in my prayers. Have faith.Take care,AllenLora <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 Children's (at Stanford). Dr. Steiberg did her second operation yesterday (left). She had her first EDAS last Tuesday the 8th. I was told that she will remain in ICU again tonight, because some of 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, and 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, but almost had a meltdown. I have held up so well...but I think I may have 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. My little Meadow is so strong, she amazes me. Take care, Lora---------------------------------Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.[Non-text portions of this message have been removed]






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