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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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3 Yrs.
Apr 25^th, 2005 at 10:40am

It's hard to believe but it's been three yrs this week since Kathleen's surgeries and her most severe strokes.Sometimes it seems like it was soooo long ago, but days like today it feels so fresh in my mind everything makes me teary eyed.In these three yrs kahtleen has relearned everything she lost to this disease.Along the way WE have learned more than most people can imagine.Our family has grown closer and stronger.How could we not, from watching all of the daily struggles kahtleen has been through,without any complaints I must add.The first five years of her life she worked very hard(she was born with down syndrome) to learn all the things we take for granted,eating, talking, walking, crawling, kneeling,jumping etc....She did this always with a smile.Now she has spent the past 3 yrs relearning it all, again always with a smile,It was pretty crooked for a while but now is as wide as ever.I'll never forget what a gift we have been given,she is alive and happy and gettting stronger everyday even after 3 yrs. We just returned from a vacation that was originaly planned 3 yrs ago,until Kahtleen was diagnosed with MM.We have promised the kids we would eventually get to Myrtle Beach for that vacation, and we fianlly did it.It was wonderful! Kathleen got to do a lot of her favorite thing to do,eat at a resteraunt (always salads can you believe that?)It was very exhausting for her but she was a trooper as usual.I could never have imagined that my baby would be my HERO in life.She has set a standard by which to live,higher than I could have imagined.I hope it gives others just going through this journey some hope that all will be well in the end.That eventually MM isn't the only thing you think about.Some days I don't even think about it at all.Every year it becomes a smaller part of our life.I truely didn't think this was possible.3 yrs ago it was all we could thing about every second of every day.Many prayers for our MM family here.Thanks for listening....
Mary Grace

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: 3 Yrs. Reply #1 - Apr 25^th, 2005 at 11:16am Wow that is great! We are a few month shy of Tylers 2 year anniversary of his surgeries. You are right life does change a lot, but it seems to be getting better daily. Your post has given me more hope.
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gotchlorine

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Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: 3 Yrs.
Reply #2 - Apr 25^th, 2005 at 12:18pm

Mary Grace,

Wow, wow, wow . . . the tears in my eyes are making this very difficult to type.

What a wonderful tribute you've written about Kathleen and her perseverance through the difficulties. Anyone with a MM afflicted family member (especially a child) will relate to much of what you said. They are truly heroes who set a standard for life far above what we can imagine. Campbell and I have spent every day of the last 18 years thanking God for "loaning" Tara to us, all along wondering how we became so fortunate.

Kathleen sounds like a remarkable little girl - one who has taught your family many life lessons. I am glad she is doing so well, and that your family has a vacation memory you will always treasure. I look forward to the day when we can say "It's been 3 years, and all is well . . ."

Thanks for the lovely report - my prayers are with you guys.

Big hugs,
Jill

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babyblue

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Diagnosed 2003

Posts: 306
kennesaw, USA, usa, 417, 219, GA, Georgia
Gender: female

Re: 3 Yrs.
Reply #3 - Apr 25^th, 2005 at 10:17pm

Mary Grace-

I am so happy to hear Kathleen's story. What a trooper she has been. You have been blessed with a very strong little girl. Last week i celebrated a year since my surgeries and i was teary eyed all day especially when i lokked of pictures. Hard to believe. I hope that Kathleen continues to do so well and i will keep you both in my thoughts and prayers! Take care my friend!

-Christy

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"Life is not a desination, but a journey!"

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kotipup

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My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Re: 3 Yrs.
Reply #4 - Apr 25^th, 2005 at 10:49pm

Mary Grace
Hi. I know I've read a little about you and Kathleen on this board, but your post really hit home to me today.

I feel like we are going through something very similar to what you've been through. Daphne has had significant developmental delays, and, like you, I have always felt like we have appreciated all the milestones gained much more than parents of "normal" children ever could. Then, to have two devastating strokes (as Daphne had) and to lose what has been so hard-earned was just so tragic for us.

I really would like to know more about Kathleen's early life... because what you wrote just reminds so much me of Daphne. Daphne is g-tube fed, has had a seizure disorder since she was three months old, and at 18 months does not walk, crawl or sit (she's come close to sitting independantly a few times, but always has a setback -- most recently the strokes). She's had extensive genetic testing, but everything looks "normal", even thought she's had both moyamoya and a heart defect (coarctation of the aorta... which, apparently, has been seen to go along with moyamoya)

I am so glad that Kathleen has made such a wonderful recovery from her strokes, and that she continues to be a happy child

I don't know about you, but the smiles we get seem to make everything we've been through (almost) worth it. It just is great to see your child happy

Jenny

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: 3 Yrs.
Reply #5 - Apr 26^th, 2005 at 9:58am

Jenny, It does sound like we've had a similar experience.It was very devestating for us also when Kathleen had her most debilitating strokes. She was like an infant again at 5 yrs old.And as I said she worked soooo hard to learn it all the first time.BUT Kahtleen's has made this so easy for us, she is such a bright light in our life.She has certainly made me the person I am today. It was extremely hard to look at pictures of her before the strokes(it still is ahrd sometimes).Pictures from easter just weeks before where she was actually standing.Kathleen was born with down syndrome,which was a huge surprise to us.This was the one time I questioned does god really know what he's doing here."I can't handle this", but the minute I held her I knew "this is right" she really was the little girl I had been dreaming of, she was "perfect". From day one she was very high functioning for a child with DS.But certainly had delays especially in speech.We celebrated every tiny milestone, she take so much pride in her own accomplishments, this really keeps her going.It wasn't until almost 5 yrs old when we saw a regression.The most obviouse was she was getting "wobbly" she started to look "drunk" at times.Our first thought was an ear infection. it was down hill from there. Kahtleen had 2 seperate surgeries. Even after 3 yrs. I still see Kathleen getting better,mentally and physically.After her strokes she couldn't even put a 2 piece puzzle together.She's now reading writting and doing 1st grade math.I see her memory gettting stronger this year especially.She even has remembered things from before the surgery.She just seems like a "light bulb went off" this year.I share this with you because I think it's importatn to know that the progress can be very slow, but steady and continue for many years. I will not let this go without saying that we've certainly had some "trying" times also.BUT these aren't the memories that stay with me.It's all the tiny wonderful things that make me smile.When I pick her up from school and she runs and hugs me.When she hollors "whoo Hooo" for having spelled a word right, When we snuggle together to read a book,when she wakes up at 6:00 and tells me "all done sleep mom"What a way to start a day I can't think of a better way to wake up even at 6:00 am.These are the memeories that will stay strong.It will does get better but it can be so slow you don't even notice it.I can leave you my e-mail so we can talk if you like I can even send you my phone # It's so nice to talk to others who have had a similar experience.If you have any questions just let me know.
Mary Grace mgrace5@nycap.rr.com

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Michell

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Re: 3 Yrs.
Reply #6 - Apr 26^th, 2005 at 10:30pm

Mary Grace,

I am so excited for you, Kathleen and your family. We just had our one year mark of the second stroke, when we found out that Trey had MM. It is amazing to think, remember, that a year ago I was holding my baby wondering if he would see tomorrow. Today he is so vibrant and amazing, he's not like other kids his age and can not do two handed things like they can, but he is here. I am with you, they are our heros. If we would have gone through what they have we might not have been able to make it and look at them. Like you said, smiling.......making you smile too.

Trey is doing okay. We took him to the Opthomologist weeks ago and he said Trey has 20/20 vision, but in his right eye the ocular nerve has been damaged from the first stroke so now Trey wears a patch for four hours a day on the left eye to strengthen the right eye. It's sort of funny, not haha funny-but funny, his bad side (left) has a great eye and his good side (right) has a bad eye but they both see 20/20. He has not made much progress with using his left hand since we last wrote. He is using it some, but not much. He is starting to take steps now though. He can take about four steps on his own and if you hold his hand to walk with him he can go until something else gets his attention. All of this will just take some time. He is starting to say a few more words. It is funny, I tought him to say "Moo" this weekend and told him that the cow says Moo. He now will say Moo when you ask him what the cow says (of course not everytime you ask him but when he wants to). You have never seen parents more excited that their child could say Moo and answer Moo. People have been looking at us like whats the big deal and it is such a big deal.

Trey will probably start a playgroup this summer a few days and hours a week. This will let him be around other children his age. Some of the children have special needs and some do not. I think that he will pick up a lot from being in the group, but I don't wont to be apart from him. I will adjust, he will be fine.

I am glad that you are doing great.

Michell

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: 3 Yrs.
Reply #7 - Apr 29^th, 2005 at 9:39am

Michell, that's great to hear about Trey.I know what you mean remembering those days when I just prayed so ahrd for god not to take my baby.I told him I didn't care if she could walk or even talk(we already knew some sign anyway).Now she's almost running,reading and writting stories. We too ahve huge celebrations for all her "seemingly tiny" accomplishments.I feel sorry for those who don't know how huge these things are.I'm very blessed to have been shown by Kahtleen what's truely important.I love ehring about Trey.Oh yeah have I mentioned we will be trying a new therapy for her hand and wrist.It's Electrical stimulation.It's mostly used for Adults but they do this at a nearby teaching hospital and her DR. set us up for the end of June to see if it can help Kathleen.
Mary Grace

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Rena Senior Poster Offline Hi, My son Tyler was diagnosed with MM in 2003 Posts: 467 , Colorado, USA Gender:	Re: 3 Yrs. Reply #8 - Apr 29^th, 2005 at 10:39am Mary Grace, I have heard about Electrical stimulation. Let me know how it works out. Tylers old therapist was learning about it, but we moved before we ever got to try it. Moving stinks when you have to start all over with therapy, but we are back on track and I look forward to seeing Tyler to continue getting better. Rrena
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Nancy_N.

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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female

Re: 3 Yrs.
Reply #9 - Apr 29^th, 2005 at 12:32pm

Mary Grace,
Mandy had that done if its the same thing when she had home health care and was in much worse shape. It was hard to tell if it worked or not because her hand was in much worse shape then it was before she started the Botox injections. I still am interested in that Neuromove, her neurologist just blew it off when we asked him about it, that is interesting I wonder if anyone has tried it.
Nancy

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
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Re: 3 Yrs.
Reply #10 - Apr 29^th, 2005 at 1:07pm

I got some info from Neuromove.A whole packet.Bottom line the cost of the machine is $4000 !!! It's very questionable if insurance would apy anything at all towards it.I talked to Kathleens Physiotrist(physical therapy Dr.) One of his collegues is actaully doing a study on this type of therapy.It's with adults so Kahtleen doesn't qualify for the study but they decided to set her up with their oT and give it a try.Do you have any teaching Hospitals in your area?They may be able to help you with this and maybe even find someplace doing a study.I knwo one thing they must be able to concentrate and initiate some movement on theri own.That's why we couldn't try it until now.
Mary Grace

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