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940RE: [Parenting Children with Moyamoya] My daughter's EDAS yesterday

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  • lora beasley
    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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