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3 1/2 Year Check-up (Read 5649 times)
cass/kate
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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female
3 1/2 Year Check-up
Apr 8th, 2009 at 2:39pm
 
Hi Everyone !

Just to let you know we will be at Stanford April 14 through 21.  Kate will be having 3 1/2 year tests to "check her brain."  She is doing very well, so this is just a precaution.  Wish us well.  Will let you know how it goes.

Cass, Kate, Jon and Tyler in Texas   Smiley Smiley Smiley Smiley
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Mar
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Re: 3 1/2 Year Check-up
Reply #1 - Apr 8th, 2009 at 3:11pm
 
Hi Cass,  Smiley

You all are always in our thoughts and prayers! Have a safe and pleasant trip. Hope the big man gives Kate the “A ok” with her check up.

Lore and Kevin (Cubbie) left for Stanford this morning. Kevin has been having some questionable issues and will be testing there the rest of this week. I don’t know whether they’ll still be there when you arrive next week or not, but I sure hope you’ll get to meet up with them if they are. Lore may need a hug before it’s all over, she’s so worried.

My continued prayers for all of ya! Smiley

Let us know how it goes.

Mar
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Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Re: 3 1/2 Year Check-up
Reply #2 - Apr 9th, 2009 at 3:06pm
 
Hi Cass,

As Mar mentioned, Kevin and I are at Stanford. We arrived last night.
If all goes well, Cubbie and I will be leaving Stanford as you are arriving.  Would love to see you and Kate again.

Cubbie is currently having an angio and I took a minute to eat lunch and check my email but will keep you all posted.

As Mar mentioned, It has been a trying last few weeks.  I could use a hug, or the thought has crossed my mind to drink my way up and down the Nappa Valley. lol!

Take care, and who knows, we might still see each other at Stanford. If we don't see you, have a safe trip.  Kate has done so well, I have faith she will have a great checkup.

I'll be thinking of you both.

Hugs,

Lore

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1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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Christie
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daughter with moyamoya

Posts: 75
Burnside IL
Re: 3 1/2 Year Check-up
Reply #3 - Apr 9th, 2009 at 3:09pm
 
HI All, Just realized my post is showing up under Christie, she must have been the last one to use the Stanford computer.

It really is me, Lore. LOL!
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« Last Edit: Apr 9th, 2009 at 3:09pm by Christie »  

1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes
 
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KTiller
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Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female
Re: 3 1/2 Year Check-up
Reply #4 - Apr 9th, 2009 at 6:05pm
 
Hi Lore,
Hope you will take a moment for a good stiff drink tonight. Sometimes it's just what the doctor ordered.
I'm glad to hear that you and Kevin made it safely to Stanford. It must be somewhat of a relief to know that you are there where help is at hand and where the answers are to be found.
Please give my well wishes to Kevin. And you, Lore, know that I and so very any others are right there with you.

Kate,
I'm sure you'll get a great report! Safe trip and best wishes,
Kim
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« Last Edit: Apr 9th, 2009 at 6:09pm by KTiller »  
 
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: 3 1/2 Year Check-up
Reply #5 - Apr 10th, 2009 at 12:18pm
 
Kim.

I took your advice and drank a stiff one. LOL!

Cubbie came through the angio fine and is now having a MRI NOVA. He is feeling much better and I believe it is because he feels safe knowing he is at Stanford and Dr. Steinberg is near by.

We will be at the hospital this afternoon for the SPECT scan. That'll make Cubbie weird for a while. I'll have another stiff one. LOL!

I hope to meet up with Jill today while at the hospital.

Thanks to everyone for your support. It means everything to me and Cubbie.

Cass and Kate,  we are leaving on the 15th, if all goes well. so maybe we can see you on the 14th.  Would love to see you again.

Lore
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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Seachelles
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God never gives us more
than we can handle.

Posts: 681
Fredericksburg, USA, usa, 474, 157, VA, Virginia
Gender: female
Re: 3 1/2 Year Check-up
Reply #6 - Apr 10th, 2009 at 10:53pm
 
Lore,

This proves that I need to check the boards more often.  I'm sorry to hear that Kevin is having problems.  Hopefully, it's nothing serious.  Shane and I will be praying for him and hope that he comes through with flying colors.  Please give him a hug from us and let us know what "Superman" says. 

And yes, have a stiff one...shoot...have 2 or 3. 

Safe travels to you both!

Cass - I'm sure things will go well with Kate.  We'll be praying for her as well.  Miss you guys...hugs from me!

Michelle
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Michelle
Chelles4U Chelles4U  
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: 3 1/2 Year Check-up
Reply #7 - Apr 11th, 2009 at 8:29pm
 
Michelle,

Thanks to you and our "Cowboy Fan" for your concern, support and prayers.

Funny thing, Kevin mentioned you and Shane just last night.  He must think it is odd to come to Stanford and not see you both. We were on the same Stanford schedule for a couple of years.

Kevin had a TIA (was numb from the top of his head to his toes)  confined to the left side, and had a seizure.  It is unnerving and startling since Kevin has had no major episodes for almost 4 years. Kevin is very fortunate and blessed to have gone so long with no TIAs, seizures or headaches.

Kevin says he feels better now that he is back on Keppra.  He only started saying he felt better once we arrived at Stanford. My interpretation of that is, Kevin feels better because he knows Dr. Steinberg is close by and he is closer to the science and the medicine here at Stanford. This is the doctor and the facility that saved his life when he was in really bad shape and all other doctors sent him home to live out whatever life he had left. It's no wonder Kevin feels better when he comes to Stanford. lol!

So far, so good. Kev's angio is good and the bypasses look excellent. He had his SPECT with Diamoxx yesterday and he has several tests on Monday before he sees Dr. Steinberg. Hopefully we'll get to the bottom of the cause of Kevin's recent episode.

Thank you all for your concern and support and I will keep you posted.

Cass, please accept my sincere apologies for Kevin's recent episode dominating this thread. I will start a new thread for future updates.

I hope I get the opportunity to see you and Kate at Stanford before we leave. If not, keep us posted on Kate's results.

Hugs to all,

Lore  
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« Last Edit: Apr 11th, 2009 at 8:31pm by Lore »  

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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cass/kate
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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female
Re: 3 1/2 Year Check-up
Reply #8 - Apr 20th, 2009 at 1:55am
 
THANKS ALL FOR THE GOOD WISHES AND PRAYERS.  KATE'S ANGIO WENT WELL (LONG BUT WELL.)  HER BRAIN LOOKS AS GOOD AS IT DID 3 YEARS AGO !  WE SEE DR. STEINBERG TOMORROW AND WILL HEAR ABOUT ALL THE TESTS, BUT WE FEEL REALLY POSITIVE.

LORE - PLEASE DO NOT EVER APOLOGIZE ABOUT SHARING INFO RE: KEVIN ON MY SITE - IT BELONGS TO US ALL.  I AM WAITING TO HEAR GOOD NEWS ABOUT YOU GUYS AND WILL STAY IN TOUCH. YOU BOTH ARE ON MY HEART AND IN MY PRAYERS.

LOVE,

CASS
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« Last Edit: Apr 20th, 2009 at 1:57am by cass/kate »  
 
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cass/kate
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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female
Re: 3 1/2 Year Check-up
Reply #9 - May 7th, 2009 at 5:54pm
 
Hi All !

Just realized I didn't send the last up-date on Kate.  Her total check-up was fantastic.  Dr. Steinberg said her grafts were stronger than three years ago and her blood flow is even better.  She doesn't have to go back for another check-up for SEVEN years!  Yeah !!!

Thanks again for all the prayers and good wishes.

Love  Smiley and hugs Smiley

Cass  Smiley
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Lore
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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female
Re: 3 1/2 Year Check-up
Reply #10 - May 7th, 2009 at 8:21pm
 
Hi Cass,

Great news on Kate! Way to go! How exciting it is to know Kate is doing so well.

That's what I call a wonderful Mother's Day gift.

Thanks for letting us know about Kate's superior checkup.

Good job Kate!

Hugs,

Lore and Kevin (Cubbie)
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« Last Edit: May 7th, 2009 at 8:21pm by Lore »  

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson
 
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Little Luca
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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female
Re: 3 1/2 Year Check-up
Reply #11 - May 8th, 2009 at 3:32am
 
Wow, Cas, that news couldn't have been any better! Well done to Kate for being so strong and well done to Dr Steinberg for doing such a fantastic job. I'm really thrilled.

Mark (Luca's Dad)
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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!
 
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