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Moyamoya Related Topics >> Moyamoya Related Information and Support >> MM reunion and updates on Trina and Kevin
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Message started by mark on May 3rd, 2005 at 9:04pm

Title: MM reunion and updates on Trina and Kevin
Post by mark on May 3rd, 2005 at 9:04pm
Hi everyone,  
 Lisa and I are back at Stanford for Marks 3 month checkup.  We made the reception that Dr. Steinberg and Teresa arranged for the MM families that were in town.  6 families were able to attend.   We all had a chance to get to know each other a bit better and spent some time with Teresa and her family and Dr. Steinberg.  He got held up a bit due to an unscheduled surgery.  But he did make it.  There were several other members of the Stanford Team as well and a photographer was present and took a whole lot of pictures.  I'm sure they will be available.  We even passed the phone around and spoke with DJ.

 Now for some more good news.  Today we spent a good part of the day with Trinas family and Kevins sister Lori.  Trina came out of surgery around 2:15pm and with his prominent gate and famous "She behaved herself and everything went good" Dr. Steinberg delivered the good news to Trinas family.  They are super people and we wish them the best and will see them again tomorrow.
 Kevin had his final tests today and he will go in for his first surgery tomorrow.  Lori will have company as well as Lisa and I and Michelle and her brother Shane will spend some time with her tomorrow.  I'm sure Jill will join everyone as well.

 Michelle had her Xenon and angiogram today.  We saw her out of the hospital with Shane as well.  She did very well.

 We take Mark in at 6am for his Xenon test and angiogram as well tomorrow.  Today he had a neuropysc test to compare to the one he had in January.  Monday he went through a MRI and an EEG.
  We also spent some time with Dr.Steinberg and Teresa.  It was funny because Dr. Steinberg said he got a lot of information from Mark at the reception on Sunday.  His office was just busting on Monday.

 We also got a chance to go see the a whole bunch of nurses and Dr.s on the B-3 area and showed our appreciation by presenting them all with a plaque as we did with Dr. Steinberg and his staff.  As we assured Trians family...They Are The Best!!!

 That's all for now.  I'm sure Michelle,Kevin, Trina and the rest of us will get you all up to date.  It's been quite a week emotionally from being back here and meeting so many people that have to experience this.  However it has been very positive and upbeat.  Everyone here is from all over the states.

 One last thing  THANKS to Jill, Tara and Chef Campbell for having us over for a very nice evening and some great food and spirits(of the proof kind).  We spent the evening with them and Michelle and Shane.  Even though they didn't make the reception.  They missed the connecting flight and to top that off they got stuck in the elevator in the San Fran airport.  That's for bashing Gordon Shane!!!

                   Talk to you later,
                           Ron

Title: Re: MM reunion and updates on Trina and Kevin
Post by babyblue on May 3rd, 2005 at 11:11pm
Glad to hear all the good news! Sounds like you all had agreat time at the reunion that would have been awesome to attend. i will keep everyone going through test and surgeries this week in my thoughts and hope to hear more later. Take care and thanks for the updates!

Christy

Title: Re: MM reunion and updates on Trina and Kevin
Post by Mar on May 4th, 2005 at 1:54am
Ditto...what Christy said!  [smiley=thumb.gif] Hope someone thought to get us some pictures for our family board. :)

Title: Re: MM reunion and updates on Trina and Kevin
Post by STrantas on May 4th, 2005 at 12:05pm
Ditto x2 for what Christy said!  Thanks for the update!

-Shari

Title: Re: MM reunion and updates on Trina and Kevin
Post by Nancy_N. on May 4th, 2005 at 12:25pm
Dotto 3x for what Christy said. Sonded like a great time, waiting for more updates!

Title: Re: MM reunion and updates on Trina and Kevin
Post by gotchlorine on May 5th, 2005 at 11:05am
Hi everyone!

This has been an amazing week.  It started with Sunday, the day of the get-together that Stanford so graciously hosted.  Six MMers and their families in one place for a social occasion is pretty fantastic.  One of the "pioneer" surgery cases, Matthew Fong (from the MM.com home page video) was there, as well as Mark, Michael, Tara, Royce and Kota.  (Poor Michelle missed the party, due to airline difficulties.)  Dr. Steinberg arrived a bit late, as he had to do a surgery (imagine that!).  Upon his arrival, he gazed around the room and quietly stated how gratifying it was to see everyone there.  I guess you had to hear it, but it was such a humble statement, it just made a person want to cry.  The party was lovely, and we are grateful for Stanford's involvement in getting everyone together.  (And yes DJ, there will be pictures!!!!)

There were two new surgery patients this week.  As Ron mentioned in a previous post, Trina's surgery on Tuesday went very well.  I was able to see her in the ICU yesterday, and you wouldn't even know she had had surgery, she looked so good!  She was in positive spirits, and was moved to a regular room later in the day.  Kevin's surgery was yesterday.  It was a long day for his sister Lori, but Dr. Steinberg emerged with good news ("he behaved himself!" ) a bit after 4:00 pm.  I very much enjoyed spending time with both families, and look forward to getting to know them better.

One of the most awesome things about the week was the support from everyone.  The Rowland and Layman families spent a huge amount of time with the surgery families.  Remembering what surgery days were like from their own experience, they really went out of their way to help ease the burden for the new families.  Michelle finished her testing on Tuesday, and chose to spend her birthday at the hospital with everyone yesterday.  While Mark was in testing, Ron and Lisa spent every minute possible extending their support to the "newbies".  It was wonderful . . . very much a "Pay It Forward" phenomenon.  I am so proud to call all of you my friends!

Michelle and Mark are done with their follow-up tests and will soon be heading home to Virginia and New York.  Trina and Kevin are on the road to recovery, and will both gear up for their second surgeries next week.  There will be more updates, but I just had to put in my  [smiley=twocents.gif] about what I've seen this emotional week.  Truly amazing . . . . . .

Hugs to my MM family,
Jill    

Title: Re: MM reunion and updates on Trina and Kevin
Post by Mar on May 5th, 2005 at 2:00pm
Thanks Jill, for the surgery updates on Trina and Kevin, and for keeping us posted on the follow ups with Michelle and Mark. Thank God all went well.  

I also want to thank you for sharing the Stanford “get together” with us. I loved it!! When I first came to mm.com, I never knew how wonderful a support group could be, or that this many mm members would ever be able to get together and be so close, and so loving and supportive to one another as you all have. It's amazing! What a blessing to be a part of it. My heart fills with a joy that’s indescribable! I too am proud to call you friends!  God love ya’s! This is what life is all about!

Please keep us posted Jill, and thanks for being there girlfriend!  [smiley=hug.gif]

Mar

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