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Re: [Parenting Children with Moyamoya] hi~my daughter was just diagnosed with...

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  • RGrace5@aol.com
    How is everything going I just ran across this e-mail as I was trying to catch up on some old mail.I hope things are going well for you and your daughter.I
    Message 1 of 6 , May 3, 2004
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      How is everything going I just ran across this e-mail as I was trying to
      catch up on some old mail.I hope things are going well for you and your
      daughter.I just wanted to let you know about a site you may want to visit.There are
      somany peope who have been to Dr.Steinburgh. It's moyamoya.com It may help
      with any specific questions about Stanford.
      Mary Grace


      [Non-text portions of this message have been removed]
    • hillary hoben
      thanks Mary, i am listed on that site as well, and go by the name hillary...my daughter and i go to stanford tomorrow and wed for a test, then next week for
      Message 2 of 6 , May 3, 2004
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        thanks Mary, i am listed on that site as well, and go
        by the name hillary...my daughter and i go to stanford
        tomorrow and wed for a test, then next week for pre-op
        stuff and yet another test, then the week after for
        surgery. and one more after that the following week
        another surgery.

        how are things going with you?

        --- RGrace5@... wrote:
        > How is everything going I just ran across this
        > e-mail as I was trying to
        > catch up on some old mail.I hope things are going
        > well for you and your
        > daughter.I just wanted to let you know about a site
        > you may want to visit.There are
        > somany peope who have been to Dr.Steinburgh. It's
        > moyamoya.com It may help
        > with any specific questions about Stanford.
        > Mary Grace
        >
        >
        > [Non-text portions of this message have been
        > removed]
        >
        >





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      • RGrace5@aol.com
        Hi, Hillary, That s a great site isn t it. How did everything go Wed.? We are doing well.Kathleen still gets stronger all the time.She is loving school, which
        Message 3 of 6 , May 7, 2004
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          Hi, Hillary, That's a great site isn't it. How did everything go Wed.? We
          are doing well.Kathleen still gets stronger all the time.She is loving school,
          which will be over mid June.I can't wait, I love summer. She will be going to
          Shriner's Hospital in Mass. in a couple weeks.they will do an evaluation of her
          left arm and leg. I will be keeping your family in our prayers.
          Mary Grace


          [Non-text portions of this message have been removed]
        • hillary hoben
          thanks Mary holly did well on wed, no problems with the diomox except for being tired the day after. just trying to keep her busy right now, she isn t going
          Message 4 of 6 , May 7, 2004
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            thanks Mary
            holly did well on wed, no problems with the diomox
            except for being tired the day after. just trying to
            keep her busy right now, she isn't going to school, we
            felt that it would be better for her to be home right
            now where we could watch her better. i'm so afraid
            that she will have a stroke before her surgery. she
            had her first TIA two days ago since Dr. Steinberg put
            her on an aspirin. her fingers were numb on both
            sides...scared me. but it was minor unlike some of
            her other ones. day by day we are getting more
            nervous(my mom and i) we will have close to 10 people
            at the hospital with us.

            i'm so happy kathleen is getting better, and she got
            to play ball...holly was pulled off the team for this
            year, funny last year she missed half the season
            because she broke her arm.

            give kathleen hugs for us, and we keep you all in our
            prayers, thanks so much for the email, it helps to
            talk to others so much, sometimes i just feel like
            crying..never thought this would happen, i was always
            one to help others through things like this and here
            we are struggling to make ends meet these days i
            haven't worked a full week for over a month and i'm
            taking a couple weeks off for her surgeries..but my
            boss is understanding and helping in other ways. her
            school is doing a fundraiser to help us out..its
            amazing to know so many people care...god bless, and
            have a good weekend.

            Hillary
            --- RGrace5@... wrote:
            > Hi, Hillary, That's a great site isn't it. How did
            > everything go Wed.? We
            > are doing well.Kathleen still gets stronger all the
            > time.She is loving school,
            > which will be over mid June.I can't wait, I love
            > summer. She will be going to
            > Shriner's Hospital in Mass. in a couple weeks.they
            > will do an evaluation of her
            > left arm and leg. I will be keeping your family in
            > our prayers.
            > Mary Grace
            >
            >
            > [Non-text portions of this message have been
            > removed]
            >
            >





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          • RGrace5@aol.com
            Hillary, I m so glad all went well. We kept Kathleen out of school too while we waited for surgery.We had become obsessed with keeping her helathy.Not to
            Message 5 of 6 , May 10, 2004
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              Hillary, I'm so glad all went well. We kept Kathleen out of school too while
              we waited for surgery.We had become obsessed with keeping her helathy.Not to
              mention keeping an eye on her too.Just before she was diagnosed she ahd had a
              sinus infection. One day at preschool the teacher said wow Kathleen must have
              been tired she put her head down on the carpet at circle time and didn't come
              back up they thought she fell asleep I really think this was the beginning of
              ehr strokes.I was so angry at myself for not being with her.What grade is
              your daughter in? have they offered you andy tutering at home?
              I know how you feel the waiting and watching was almost unbearable at
              times.We just wanted the surgery to be over with.Kathleen actually had a stroke on
              the way to Boston for surgery.I was so scared that they would have to
              postpone ehr surgery and we would have to take her home and wait.It is wonderful that
              you have so much support to be with you.That is so hlepful.My sisters came to
              Boston with us for ehr surgeries.I can't imagine being alone waiting for the
              surgery to end.Please if you need to tlak to someone feel free to give me a
              call.Welive in NY.I know how helpful it can be to tlak about it.Especially now
              when it's all you can think about. Please know you are in our prayers.
              Mary Grace 518-477-2282


              [Non-text portions of this message have been removed]
            • dsrm5482
              ... My son, Kyle, had a stroke due to Moyamoya, on Feb 22, 1997. He, too, had been napping and EXTREMELY tired the week before. My sitter was worried, I was
              Message 6 of 6 , Jun 2, 2004
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                ---
                > Mary Grace,
                >
                My son, Kyle, had a stroke due to Moyamoya, on Feb 22, 1997. He,
                too, had been napping and EXTREMELY tired the week before. My
                sitter was worried, I was perplexed! He also had an upper
                respiratory infection (left ear - the stroke was on the left) 12
                days before. I assumed the infection and the anti-biotic was making
                him tired. Apparently, upper resp. infections are fairly common
                just before the onset of the stroke with Moyamoya. Makes sense: low
                blood flow, less ability to get healing fluids in, wash bacteria
                away. The day before the stroke, he had a tummy-virus with nausea.
                Not that we haven't had struggles, but Kyle is really doing quite
                well. He's just graduated from Elem. and has maintained A-B avg
                each school year. With a late July birthday, he is young for his
                grade - had I not been told by several "experts" that "He'll be just
                fine!", I would've held him back a grade in the beginning. He's
                been in Resource (special ed services) for reading/writing since
                first grade. This year he only went to Resource for writing and
                will continue that in 6th gr. He receives about 1/2 hr of OT
                services at school as well - is learning to type one-handed. Out of
                frustration with school work, last summer we had him evaluated at Tx
                Childrens' Blue Bird Circle Clinic by a Neuropyschologist and she
                determined he had difficulty with distractability and impulse
                control (basically Attention Deficit Disorder w/o Hyperactivity)
                His school work improved greatly after starting him on Strattera
                (not a stimulant) in Jan. I think ADD is not uncommon after brain
                injury so watch for the signs in your children - the earlier it is
                diagnosed and treated, the better for the child. A couple of good
                websites to get info on this is Amenclinic.com and add.org. Kyle
                had many of the symptoms of ADD, but the school never suggested it
                and just treated his disability due to the stroke. His self-esteem
                sufferd greatly before the diagnosis and drug therapy.
                I wish you God's blessings of peace and wisdom as you help your
                daughter grow. If I can answer any questions for you, you have
                my "e"dress!

                Sue
                >
                >
                > [Non-text portions of this message have been removed]
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