Hi everyone!

I am Kevin (cubbie) sister Lore.  I want to let you know we made it back to Ohio (even with a flight delay in Chicago) and to update you on Kevin.

As you may already know, Kevin had a significant stroke about 4 years ago and yes, it has taken us this long to receive a correct diagnosis of moyamoya and to get to Stanford for treatment. Kevin also had a dissected right upper internal crotid artery that was 100% occluded. As a result, Kevin was labled "unique" by Stanford.  As Ron mentioned in an earlier e-mail, after Kevin's first surgery on May 4, he was speaking as though he had never had a stroke and yes, it was "beautiful".  Kevin had surgery on the left side on May 10.  This is where the motor and speech is located.  Kevin had a small set back when the weak vessels from his old stroke absorbed blood and then spilled the blood in the brain which caused dysphasia and seizure.  This doesn't happen often however it has occurred in the past.  Keep in mind from the beginning, Kevin was labeled "unique" by Stanford.  Kevin's speech and ability to communicate are improving everyday just as Dr. Steinberg said it would.  Those of you who have dealt with this know what I am talking about.  We consider this set back insignificant to the alternative prior to Dr. Steinberg's surgical intervention.  We are forever indebted to Dr. Steinberg and his staff and eternally grateful for the second chance at life for Kevin. I cannot say enough positive things about Dr. Steinberg (the true miracle worker) and his staff and Stanford.  These people are simply the greatest.

I want to thank Jill (the Stanford moyamoya ambassador) for sitting with me through two surgeries and one was over 9 hours long and offerring to help me clean the apartment before we left.  I wanted to say
"get a life" then I realized this is not only Jill's life but her passion to support moyamoya patients and their families.  How fortunate we are to have Jill, Tara and Campbell.  I want to thank Ron, Lisa and Mark Rowland, Michelle and Shane and Trina and her dad, mom and brother for sitting with me through surgeries and for all their support and kindness while at Stanford. None of this would have been possible without DJ and the moyamoya web site for which we are eternally grateful as we may never have found our way to Stanford for treatment without DJ and moyamoya.com.

I will continue to update you on Kevin's progress.  He really loves his moyamoya family and depends on all for support.

May God richly bless you all.

Lore (Kevin's sister and care giver). :)

 

Hi Lore!!  This is Trina -- I'm so glad to hear that Kevin is doing better and that you both reached safely home.  We had lunch with Jill's family yesterday, and I had asked about you because we called you at the apt. on Friday and I think we had just missed you.  I will try to call you today before we leave CA tomorrow.  

I too  ditto your comments about Tara & family, and Michelle and Shane, and Mark & family, and YOU as well.  My family has been overwhelmed by the support from this site, and more importantly all of you who we were able to meet during our trip out here.  We are truly blessed to have supporters, and now friends, like you.  

Talk to you soon,
Trina

Hi Lore!

It was our pleasure to sit with you through Kevin's first surgery.  It was the least we could do!  It was something that  WE WANTED to do.  I'm glad to hear that Kevin is getting better and showing improvement.  I was sorry to hear about the problems he had after his second surgery.  Please tell him hello for me and give him a hug.  

Take care of yourself and keep in touch.  

I will send you my phone numbers through private message.

Hugs,
Michelle & Shane

Hi,

"ITSME" I'm new to the board but CONGRADULATIONS, I know you will be feel than new. Hang in there and each day you will feel yourself heal. My time is coming soon for the surgery and I can't wait to meet my Moya
family in Vegas or somewhere, someplace....Stanford, hahaha. Keep in touch!

Hi Lore,  
 We are so happy to hear that you and Kevin got home ok.  We were glad to have the opportunity to meet you and Kevin and will always cherish the time we were able to spend with you both.  I know now more than ever how important it is to help other people get a grip on this disease.  Let's stay in touch and keep up on Kevins progress.  By the way, what was the holdup in Chicago.  Did Kevin try to get clearance to fly the plane back?
                    All our best,
           Ron, Lias and Mark