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941RE: [Parenting Children with Moyamoya] My daughter's EDAS yesterday

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  • lora beasley
    Jan 17, 2008
      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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