DEAR EVERYONE,
         WELL WE ARE HERE AND ALL IS GOOD. WE MET WITH DR STEINBERG TODAY AND HAD ALOT OF TEST DONE. CHRISTY HAD A TRANSDOPLER BRAIN SCAN DONE, NOT PAINFUL AT ALL AND TOOK ABOUT 30 MINS. THEN WENT AND MET WITH THE DR AND HE IS GREAT, EVERYTHING DJ SAID ABOUT HIM AND HIS STAFF IS SO TRUE, EVERYONE AT THE HOSPITAL WAS GREAT TO US TODAY . SHE THEN WENT DOWN FOR THE SPEC SCAN, TOOK A LITTLE WHILE TO DO IT ABOUT 1-2 HOURS, SHE DID FINE, IS REALLY TIRED NOW WE WERE AT HOSPITAL FROM 9-530 THIS AFTERNOON, WE WENT TO TALK TO PRE-OP DOCTOR AND THEN HAD LAD WORK DONE, FINALLY GOT ON OUR WAY BACK TO THE HOTEL. SHE IS SLEEPING NOW AND FEELS OK JUST KINDA WORN OUT.  HER SURGERY IS WED MORNING AT 730 CALIFORNIA TIME. WE HAVE TO BE THERE AT 530AM HAHA WASNT HAPPY ABOUT THAT ONE. ANYWAY WE ARE ALL DOING GOOD, JUST WANTED TO UPDATE EVERYONE ALONG THE WAY. CHRISTY SAID TO TELL EVERYONE HELLO FOR HER AND THANK YOU FOR YOUR PRAYERS. WE HAVE A COUPLE MORE TEST TOMORROW BUT SHOULDNT TAKE AS LONG AS TODAY. WILL TAKE HER OUT FOR A GREAT DINNER TOMORROW NIGHT WITH DJ, lol.. ANYWAY WILL FILL YOU IN LATER AS WE GO. TALK TO YOU SOON.
THANKS LOVE AND PRAYERS TO ALL
DIANE

Hi Diane!  Diane in San Jose here.  DJ asked me about getting together while you are out here.  Have him get in touch with me if that is still on.  I gave him my home and cell phone numbers.  If he can't find them, let me know where you are staying and I will get in touch.  (I will probably need your last name if I am going to do this, to be put through to your hotel room.)

If you guys are just too exhausted (which would be understandable), that is okay too.

I don't have MM, but my sister, PatM in New Jersey, does.  Therefore, I am very interested in what can be done for Christy.  Pat will have her first EDAS surgery in NYC this Friday, April 16th.  Then they will do the same thing on the other (left) side in mid-June.

I'm off work this week, so let me know if you want to meet up.  I can come over to Palo Alto.

Praying for you and everyone on here!
Diane

Hi Diane and Christy,

Glad to hear that everything is going OK.  We will keep you in our prayers and stay strong.  He will be guiding you all the way.

Always

Janice  

I'm headed to Stanford in the morning to try and be some support for Christy, Johnny, and her Mom.  I will have my laptop with me and will keep everyone informed on how it's going.

Diane, I have your numbers in my phone.  I will give you a call.

;;D

Christy and Family - you are in my thoughts and prayers today...all the best of luck and Godspeed for a speedy recovery!!! [smiley=hiya.gif] [smiley=smile.gif] [smiley=wave.gif]

Babyblue,
               You will get thru this so much easier with D.J. being there he was there for us and it helps so much to talk to someone thats been threw it to no what to expect and not just turn around and ask what a comfort. Hes the bomb as the kids say what a guy. You'll be fine tell Dr S. we said hi and Theresa too. We will be praying and thinking of you. Try to enjoy some of that beautiful Ca. its gorgeous. Looking forward to the next post. Good Luck!!
                                        Nancy [smiley=hug.gif] :) ;) :D

Good luck and you have everyone praying for you and your mom.  I am sure the waiting for surgery to be done is lot more difficult than having it done.  I think the waiting is going to be difficult on my husband..  

Good luck again.  I will say my prayers when I get up.  I hope you had  a great dinner in the San Francisco area.  ;)

Paula

Hi Diane,

I too want you to know that Christy, you and your family are in my prayers today. I'tll be a long and exhausting day while waiting for the surgery to be over, but she's in excellent hands. Dr Steinberg is the greatest!! There is no one in the world I'd rather have operating on me... and DJ being there is another angel on your side. So, I feel confident all will be just fine. We're there with you in spirit.

God bless,
Mar

Paula,
       Your exactly right D.J. has been on both ends of the stick and said it is much worse waiting to here about your loved one than it is going thru the surgery. We're here for your husband though like Mar said and everyone elses family too. Good Luck your in our thoughts and prayers. I'm sure you'll do great, can't wait for the update.
                                  Nancy  [smiley=clown.gif]

Finally got Christy checked into surgery!  It was a loooooong morning, checking in at the hospital at 8:30am (west coast time).  They finally rolled her to the OR around 1pm.  She was in VERY GOOD SPIRITS and ready to get it all over with.

Had to come back to the hotel and get a couple hours sleep before heading back to wait for her to come out of surgery.

I'm including a picture of her taken last night after dinner.  Got a lot more today of her pre-op which I will post as soon as I can.  I'll keep you updated!

;;D

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy01.jpg

Here's a few more pictures from this morning...

Diane & Christy
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Justin (Johnny's friend), Christy, and Johnny (Christy's boyfriend)
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Christy, DJ, Diane
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy04.jpg


Having the left side done today guys...
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More later...

HEY EVERYONE,
          WELL CHRISTY FINALLY GOT OUT OF SURGERY ABOUT 830 TONIGHT OUR TIME HERE. IT WAS A VERY LONG DAY FOR US ALL. THE SURGERY WENT GREAT AND NO PROBLEMS. THEY GOT HER TO ICU AND WE FINALLY GOT TO SEE HER ABOUT 9 PM. SHE WAS REALLY STILL DRUGGED UP ALOT AND WASNT FEELING GOOD BUT ACTUALLY WAS DOING GREAT ALTHOUGH SHE WONT REMEMBER IT TOMORROW.  IT WAS SUCH A RELIEF TO SEE HER AND KNOW SHE WAS OK, I HAVE BEEN A NERIVOUS WRECK ALL DAY LONG. THANKFULLY FOR DJ AND HER BOYFRIEND AND OUR OTHER FRIEND, I HAD ALOT OF SUPPORT. WE ARE HOPING SOME TIME TOMORROW THEY WILL MOVE HER TO A REGULAR ROOM AND GET TO SPEND MORE TIME WITH HER. WE WILL CONTITUE WITH UPDATES ON HOW SHE IS DOING AND KEEP YOU ALL INFORMED. THANKYOU FOR ALL YOUR LOVE AND PRAYERS. YOU DONT KNOW WHAT IT MEANS TO ME. MORE LATER AND LOVE TO ALL

DIANE :)

Hi Diane and the California gang,

What great news - You are all wonderful for Christy.  Thanks for the neat pictures and updates.  

My sister has some good news.  Patty has a devasting stroke 02/01 and the surgeries at Mayo Clinic 12/02 and 01/03 diagnosed with mm 12/97.  We had her at Florida Neurlogical Institute in Clearwater Florida under Dr. Hemmisphar this past January. (He was up for a Nobel Prize in 1999 for his work with stroke victims.)   Anyway the good news----Patty took 3 steps at therapy yesterday.  She had some help still the same we start with small steps.


Stay strong --we are praying for all of you.


Janice
 

Good Morning to all of you guys in Cali!

Hope to hear later today that Christy is doing well.  I've been nervous for all of you all the way from south carolina.  The pictures were really cool, thanks!  

Marking her head with the "yes" was a great idea too - JUST IN CASE!

My hair is about Christy's length, and I can't stand for it to be dirty, so I'll be interested to know how long it is before she can wash it (weird request, I guess, yet practical).

Thanks for emailing me personally too, Diane.  I truly appreciate it.  Glad to see also that DJ and Johnny and his friend are all there to give their support also.  I'm STILL waiting to hear about my ops from my doc. at Emory....Maybe today?

Y'all hang in there!
:-*
Kris

Hey Diane,
               So glad to here babyblue's surgery went good (I knew it would) Dr. Steinberg is the best didn't you just love him. Big man isn't he, (haha).
The next side will go just as well I'm sure. Isn't D.J. great? It helps so much to have him there. Your'e lucky to have so much support thats wonderful. We'll be praying for her still tell her to be tough she'll be surprised how quick her recovery will be. Keep us posted. [smiley=sayyes.gif]
                                Nancy

We are so glad that everything went smoothly.  You are so lucky to have so much support.  I was happy to see pics before hand, but what happened to post op?  I also have hair as long as Christys and want to see what happens.  I have to explain it to a 3 year old and don't want her to be too shocked.   :o

I hope everything continues to go well.  I will keep saying prayers.

Paula

Hi everyone at Stanford,  [smiley=sayyes.gif] Great news!

Thanks so much for the update and the pics...I've been so anxious. I knew all would go well, (Thank God) cause you have the best on your side... Family, friends, love, prayers and DR.Steinberg!! What more can ya ask for. [smiley=wink2.gif] Looking forward to hear more about Christy's progress.

Mar [smiley=winkkiss.gif]

janicetedd wrote on Apr 15^th, 2004 at 5:26am:

the good news----Patty took 3 steps at therapy yesterday.  She had some help still the same we start with small steps.

Fantastic news Janice [smiley=sayyes.gif]
I knew she could do it. Patty said she would walk and I believe her. This just isn't a small step...It's a testimony to her strength, faith and perseverance. Tell her we're proud of her and to keep up the good work! [smiley=winkkiss.gif]

Your Buddy,
Mar [smiley=hug.gif]

It is so wonderful that you are doing so well.  I have been so interested to hear your story and see your pics.  I know everything was easier having such support there in California along with all your moyamoya friends over the computer!!!  I have been extra interested because it looks that I might be right behind you in California with Dr. Steinberg.  He has my films and it looks as though surgery is indicated for me also.  I had a stroke on l/25.  You are in my thoughts and prayers and please continue to update us with your progress with pics and daily posts.  God bless you! [smiley=hug.gif]

Hi everyone in Cali!  This is Kelli, DJ's good friend from Kansas.  Just wanted to wish you the best of luck on the next surgery.  And glad to hear everything went well on the first one.

Just one piece of advice about DJ....Don't let him drag you to Chili's too often!  LOL  (just kidding DeeJ)   ;;D

Kelli wrote on Apr 15^th, 2004 at 10:39pm:

Just one piece of advice about DJ....Don't let him drag you to Chili's too often!  LOL  (just kidding DeeJ)   ;;D

Hahahaha, you're too funny Kelli!  Actually, we haven't had time to go to Chili's, but I have Christy craving some Southwestern eggrolls! lololol

Started out this morning seeing Christy in the ICU about 9am.  She said she made it through the night just fine, waking up every couple of hours.  She was awake and alert this morning and was in a very good mood.  Her eye had gotten pretty black and was starting to swell up pretty good, but she wasn't in any pain.

Only got to spend a little bit of time with her part of the morning in the ICU, but they finally got her into a "normal" room late this afternoon where we were able to spend several hours with her.

All but one of her IV lines had already been taken out and she was up walking on her own.  She was still in a really good mood (cracking some pretty good jokes, actually), and still in no pain.  Swelling around her eye had grown some from when we were with her in the morning, and her eye had gotten a little bit blacker, but it looked like it was starting to slow down.

I leave early in the morning, but Diane assures me she'll continue to keep us updated on Christy's progress.  Pictures from here on out will have to wait until they get back home and can send them to me via email, but she will keep us informed from the computer here at the hotel and the community computer's at Stanford.

Here are the pictures from today...

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy07.jpg


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy08.jpg


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy09.jpg


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy10.jpg

Hi Christy and Diane,

What great pictures - black eye and all.  We continue to keep you in our prayers and look forward to your updates.

Janice

Great pictures Deej its so much comfort to the family back home to see those I know it was for my family its almost like being there. Keep up the good work babyblue your doing great!
                                 Nancy ;)

Hi All!

Christy looks like she came out of this first surgery like a prize fighter!
Glad to see she's in good spirits!  I am too, finally heard yesterday from Dr. Barrow @ Emory...My surgeries are going to be scheduled for May!  Left side first, just like Christy!  I had the best sleep last night I've had since my SPECT scans were done 2 weeks ago!

So glad Christy is doing great.  Thanks for the pics too - She's a really cute girl despite the black eye - by the way, how did that happen?  [smiley=bash.gif]

Good Morning from Texas.  I'm DJ's Mom and so happy DJ was able to be come be with you for Christy's surgery.  I wish everyone with MM could go to Stanford and have Dr. Steinberg perform his magic on them.  And .. if DJ had his way .. he'd be there for everyone of them .. helping to calm nerves by sharing his experience and taking pictures so those back home could feel closer to their loved ones.  Congratulations, Christy AND Diane on a successful first surgery.  DJ tells me you are doing GREAT!!!  The next one will be sooo much easier on you all.  Take care and God bless.  I can assure you .. I will keep you in my thoughts and prayers.  AND, DJ have a safe flight back to Kansas.     :)

DJ called me from Denver on his way home.  He gave me Diane's cell phone number, so I will try to call her and maybe visit before they go home at the end of the month.  (With a 3-month old, I don't really get to dictate my own schedule too much, so we'll see . . . . . )

Mom, you must be so proud of DJ for how he has taken an illness (that some might let get them down) and used it instead to support and inform people all over the world.  I am really impressed with him for coming all the way out to California just to be here for Christy and Diane.  And posting the pictures makes us all breathe a sigh of relief, whether for ourselves or our loved ones.  I myself wish someone could send me some pictures of my sister, 3000 miles away, after her surgery from which she just emerged a few hours ago.

You raised your boy right!

Diane Main
San Jose, CA

Found one more good picture of Christy I wanted to put up to remind everyone what she will look like when the black eye's go away, the scars heal, and the hair grows back.

She'll look just as beautiful as she did before her first surgery (when this picture was taken) so don't let the process of it all worry you or get you down!

;)


Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or http://www.moyamoya.com/christy11.jpg

Dear Everyone,
             Well another day has gone by and we are making progress. Christy's face  and eye were some what worse today but she is handling it alright. I got her up and walking today, she made 6 rounds on the indoor track as she calls it, so they stopped her heprine, her eye looks pretty bad today and alot more bruising around her face but Dr Steinberg said that is normal due to the blood thinners. She had a small TIA attack this afternoon but didnt last long and was only in her hand, she is fine from it. She is still in good spirits but very tired. She is eating pretty good and is so wanting to wash her hair,lol. Not really but she is good. We are looking forward to getting her out on sunday and just spending a couple of days resting. Dj was and is a great guy,  ;;D, it was so good to have him here for Christy and for me also.  I am trying to keep her up to date on all the replys on here and all  the emails too. We cant put any more pics on right now as i dont have the cords to hook up to this computer and DJ had to return home,but will have lots when we get home and will get DJ to get them on line. She said to tell everyone hello and thank you for all your love and concern. She isnt much into wanting to talk on phone right now, but wants everyone to know she thanks you for your love and prayers and messages you have been sending. Me also, I couldnt never thank you all enough for all you are all doing, and to DJ who had a great shoulder for me to cry on. Well gonna close for tonight, will update you more tomorrow.

Thanks and Love and Prayers to all
Diane and Christy and Johnny

p.s. dj NOOOOOOOOOO CAPSSSSSSSSSSS lol

Hey Christy We are all glad you are ok...
Love Todd, Tam and the kids

:(, Well we have had a little setback, about midnight last night i got called back to the hospital as Christy had a seizure. They took her and got a ct scan, which showed nothing so that was good. It is actually really normal to have seizures after any type brain surgery. They moved her to a kinda little icu room so there is a nurse with her all the time, they are being great about letting me and Johnny come in to see her. Needless to say I havent left the hosptial again.I will go and take a shower later and stay the night again. Johnny and I are going to take turns staying here as not to wear ourselves out. But she is good, really sleepy as they put her on anti seizure medication, they changed it because the first one she had a reaction to. but she is doing much better now. Will update later this afternoon.

Love and Prayers to all
DIANE, CHRISTY AND JOHNNY

hi Diane/Christy/Johnny

Thank you so much for tfollow-ups.  Sorry about the incident   /siezure.  After Patty had her second surgery she had a seizure -- they called it a focul seizure.  No damage just the brain adjusting to the surgery.

Keep up the good work.

Janice

Hi Diane, Christy and Johnny,

Thanks for the updates.  Glad to know they didn't see anything bad on the CT scan.  What's the difference between a "seizure" and a "TIA" ? My neurologist kept telling me what I was having were seizures (and put me on Keppra), but the more I hear about TIAs , the more I think what I had were TIAs.  I guess he just has confused me about all of it >:(

Please let Christy know (if you haven't yet) that I'm genuinely concerned about her (even though we've never actually met).  When I hear she's had a setback, it makes me sad   :'(

Diane, you and Johnny are really troopers in every sense of the word.  Maybe we can talk sometime.  My Mom told me she'd love to know all the details from an expert, and I think you're awfully close to qualifying at this point.  I just want to know stuff like when I can wash my hair and how I'm going to be able to see without my glasses!

Do you think Dr. S will still perform the right side surgery next week - or is it still too early to tell?

If Christy's eyes stay black too long, she can always wear shades 8)...wait, that won't work, because of the incision(s)!  Sometimes you just can't win, can ya?  My surgeries haven't been scheduled yet, so I'm going to check back w/Emory on Monday because I keep having increasingly irritating dizzy spells [smiley=huh.gif], and I'm thinking the sooner the surgery, the better.

If your not too tired, and you deserve to be :-/, please keep updating all of us out here in MM land.

Many many thanks,
Kris

Morning to everyone, :)
         Sorry I didnt write last night was so tired and all and just wanted to stay with christy, she slept most of saturday due mainly to the medicine, and most of the time, I stayed here with her and let Johnny go get some sleep back at the hotel. She looks really good this morning and says she feels pretty good, well said she felt like she was run over by a train, lol, :P I told her that was ok cause she looked like it too [smiley=laugh.gif], haha. Christy is really feeling better this morning, thankfully. They said she might even get to go back to hotel today, ;;D so we will see when doctor comes in, update more later.

love and prayers to all
Diane, Christy and Johnny [smiley=hug.gif] :)

[smiley=wave.gif]
Thanks so much for the updates Diane...we're all a wreck here worrying and they're so comforting. Please give Christy a big hug and tell her how proud we are of her...What a trooper!! You go girl!!! [smiley=winkkiss.gif]
Take care of you too Diane [smiley=hug.gif]

God bless,
Mar

Chrisy,
         Bummer on  the seizure but hang in there you'll be o.k. positive thinking, I really hope you get to go back to the hotel it does a world of good if you can't though it's for a good reason and the best for you. Before you know it you'll be back to normal and it will seem like it was so long ago. Your a brave young girl and strong you hang in there and we love to here your updates, looking forward to one soon again. Hope you have a quick recovery.
                               Nancy  :) :D ;;D [smiley=hug.gif]

Just wanted everyone to know, I talked to Diane tonight.  Christy was released from the hospital today and was able to go back to the hotel.  She's doing good, just tired from the medication so she's sleeping most of the time.

I was able to get her to giggle with an inside joke on the phone, so I know she's ok... lol

Keep her, Diane and Johnny in your thoughts and prayers this week as Christy will have her second surgery this coming Wednesday!

[smiley=headbanger.gif]

I just found this web page today, and I am so glad that I did.  I hope your daughter is recovering well.
My little girl (she's 8) was just through an MRI, and it came back as possilbe MM.  She has more tests to go through now.  I'm so glad you posted all you experience, I will be showing it to Kelsey, to help her understand and be brave.
You are in my thoughts and prayers.
Colleen

My prayers are still with you.  You at least got out of the hospital for a little while.  Keep the spirits up!

Paula

Diane and Christy,

You are both on my mind and in my prayers again today for the 2nd surgery.  Just want to let you know you're both my heroes!

Hope this one goes well.  Let us all know when you can.

Thanks,
Kris [smiley=hug.gif]

You go Christy show us your stuff we know you can pull through this one just as easy, keep up the good work.
We'll be waiting to here from you. Hugs and prayers to you and your family.
                                      Nancy [smiley=hug.gif] ;)

Christy and Diane...

It's me AGAIN!  Hope things are going great today for you both.  

I just got my surgery date  ;;D  at Emory... Left side surgery on May 18th - check in at 6AM! [smiley=tongue2.gif]

Of course, pre op stuff will be on May 17th, 2pm.  I can handle that time of day much better.  

Maybe you both(?) can come visit me and my family while we're there and share some of your MM wisdom [smiley=bow.gif].  I'd love to finally meet you both.  We'll see how everything goes, I guess... one day at a time is all anyone can do!

Love and best wishes,
Kris ;)

Hello all,

Those are lovely pictures.  DJ, you are a wonderful person for being so supportive.  I don't know too many people who would do that.  How nice it must have been to experience this with soemone who has been there, just like family.  Alice
By the way, Christy you are a beaugtiful girl and I am glad you are okay.

Hello To All,
       [smiley=wave.gif] [smiley=hiya.gif]    Well our second surgery  is done, sorry I didnt post last night, she didnt get out of surgery till midnight and it was like 1am before i could see her. Dr Steinberg wasnt able to use the artery where he had planned to get it from, so he took one off the lining of her brain, it worked very good and the blood flow is good. [smiley=sayyes.gif] We are now back at the hospital and have seen her she is still in icu, they will move her some time today as long as she is doing good, and they find a room,lol. He said her headache maybe a little worse because of where he had to get the artery from. Her face is starting to swell on the right side and is slowly starting to match the left. She said to tell everyone hello and thanks for all your love and prayers. Kris we will definatley be coming to see you when you have your surgery, so tell your mom she will have someone to hang out with, and keep her company. Christy maynot be able to stay the whole time depending on how she is feeling but I will be glad to be with her. Well gonna run for now will write more again later. Talk to you all soon.

love
diane, christy and johnny [smiley=hug.gif]

Hi Christy and Diane----PatM here.  Christy you are a beautiful girl and so brave.....I really look forward to meeting you and Diane this August.....Sorry I did not get to write sooner, but I just had my first EDAS surgery on April 16th.  The black eye wasn't as black as yours, but my right eye was swollen completely shut (with the bandage on my head and my swollen eye, I looked like a combination of Sponge Bob/Quasimodo).  Know that our thoughts and prayers continue to be with you and that we are all rooting for your speedy recovery.....God Bless you, your family, Johnny and DJ for being with you....and remember to pray for Jared, who has Down's syndrome and is having his surgery on
April 30th at NY Presbyterian Hospital.  He has an MRI on the 29th (I get my staples and stitches removed from my head that day---so I hope to be meeting Donna, Jared's mom, and some of his sisters at the hospital that day.)  Be well, with lots of love and prayers from your moyamoya family, PatM ;) :D

Good to hear that Christy is doing well!  Thanks, again, for keeping us posted.  She's in our prayers for a speedy recovery!!

-Shari

Hi Diane, Christy and Johnny

Glad to hear the good news.  I know it was a long day for you and also as long for us waiting for news.  

We will  keep you in our prayers and I asm sure that you will be home soon.

Diane - we should be hearing something soon about taking Patty back to Clearwater.  I will keep you informed.

Janice  

.  

Hello again Diane, Christy and Johnny (he's still hangin' in there too, I guess - wasn't sure)!

Glad to hear the right side went OK.  Hope Christy's recovery goes well as does everyone else on this site !:D

I was also really happy to hear that you both might be able to come see me and my Mom and Dad while I'm at Emory ;;D

It's odd, but really good that having such a rare disease could bring people together that in a "normal" lifetime may have never met!  I'm very happy about that.  Give Christy a hug for me, but be sure not to hit either of the sore spots lol.  

Love,
Me (Kris) and my Mom (Joan) and Dad (Bob)
[smiley=heart.gif]

[smiley=sayyes.gif] Way ta go Christy! [smiley=hug.gif]

So glad the second surgery went as well as the first!! Now, ...on with getting stronger and carrying on a normal life. Another success storty in our mm family. Thanks be to God!

Diane and Johnny... You're the greatest support team!! Now you can relax.

Group Hug! [smiley=smile.gif]

[smiley=wave.gif] everyone,
    well we finally have gotten out to a private room, hehehe i asked dr steinberg to get it for me, not leaveing christy alone. what can i say the mom in me. she is doing pretty good this evening. pretty sore and her right side hurts quit a bit but he said it might hurt more because of where he had to get the artery. haha she doesnt want to take anything for pain, silly girl friends comes on at 8 and she doesnt want to miss it. duhhhhhh anyway will write more later. love and prayers to all. thinking and praying for all who are fixin to go thru the same. will write more later when i have some more time. love you all

diane, christy and johnny :-*

dreamerdi wrote on Apr 22^nd, 2004 at 10:33pm:

she doesnt want to take anything for pain, silly girl friends comes on at 8 and she doesnt want to miss it.

[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]  That is too friggin' funny!!

So glad to hear you got a private room this time.  You all deserve it!

Christy, I think about all of us joking around before your first surgery every day and it makes me giggle.  You keep smiling girl!

Diane, text me the number to Christy's room and I'll call before I go to work Friday afternoon.

;;D

-DJ

sc_girl wrote on Apr 22^nd, 2004 at 6:54pm:

It's odd, but really good that having such a rare disease could bring people together that in a "normal" lifetime may have never met!  I'm very happy about that.

Very well put Kris!  You're right!  It's awesome!

I second that D.J. and Christy excellent job so glad to here your doing well even though we all had faith that you would, stay strong and remember your through the worse part now its just recovery and back to a normal life. I'm so glad for you thats the best news ever. Get your rest.
                       Nancy [smiley=headbanger.gif] :)
                                   :) ;) :D ;;D [smiley=laugh.gif]

[smiley=wave.gif]
    Hi Everyone,
              Well another day has almost past and we are doing great. They might let her return to hotel tomorrow and she will get staples out on wed or thurs this week. She is hopeing she will be able to wash her hair about thursday or friday.She says her right side isnt hurting as much as the left side still does. I am gonna talk to Dr Steinberg about that when I see him. She has been up and walking around some today and I took her outside for a little while but the sun bothered her so we didnt stay out long. Once again thanks for all the love and prayers and talk to you all soon. ;;D  

love
Diane,Christy and Johnny [smiley=laugh.gif]

Hi Diane, Christy and Johnny.

Glad to hear all the good news - - we will keep you in our prayers and hope you get the Ok to head home.  I am sure that you are tired of hotel rooms.  

Janice

Hi All 3 of you still out in Cali!

Glad to hear that the 2nd op seemed to go better.  I'm a little nervous about the "no washing hair for so long" thing, but with the 2 ops one after another, I guess there's no choice! [smiley=bag.gif]

I bet all of you are so glad that this is almost all behind you now, and home is right around the corner (even if it is across the country!).  Bet a good night's sleep in your own bed (Christy at least) will feel so good [smiley=sleep.gif]

I'm already starting my preps (trying to tie up loose ends at work and personal stuff) to get ready for Emory on the 18th.  Once again, I'm so glad you plan to be there for me and my parents.  After you get back to Georgia, will you please email me your phone # so we can talk in person? I'll send you both mine (and my parent's) when you get  back home.  You certainly don't need to try to keep up with anymore than you absolutely HAVE to right now! :D

Keep us posted as to when the hair washing finally takes place, and if it can be done with one set of staples (rt. side) still in?  And let us know how the next week goes for y'all.

Thanks, and HANG IN THERE!
You're almost at the finish line - I'll keep my fingers and toes crossed that the recovery from here on out is a snap! No more of the head-splitting barfing I hope...

[smiley=hurl.gif]  That HAD to be miserable!!!!

Love, Kris [smiley=heart.gif]

hi christy & diane
                        i am so glad to hear the second surgery is over and went as well as the first you can go home and begin your new life now how wonderful i will continue to pray for you and everyone else my son jared goes for his first surgery this friday the 29th here in ny i wish everything was over  the days just seem to be crawling by i just hope and pray he does as well as you it is very reassuring to read all the updates thanks so much for letting me and everyone else know how everything went stay well and god bless
                                                         donna

Morning to everyone,
        Well we got to come back to hotel yesterday afternoon and Christy had a pretty good night, woke up a few times.She has a pretty bad headache this morning. Donna we have you and your son in our prayers and are thinking about you. I know I have been so busy with everything here havent been able to response to everyones post but want you to know that I am thinking about you guys. I know everything will be alright. Right now we have an appointment to see Dr. Steinberg on wed to get her staples out and hopefully with no other problems will be flying out on sat morning.I cant say we arnt ready to fly home. It will be so much better and I think we will be able to rest better too. Well will write more later. All take care and talk to you soon. And kris cant wait to meet you and your family I will email you the numbers.

love and prayers
Diane,Christy and Johnny

Hi Christy, Diane, Johnny and all---

Glad to hear that all is progressing well and we all hope and pray that you are home soon.  I am so looking forward to meeting you all in August.  You are some terrific people.  The party is shaping up to be really big.  The New York Metro Mass Choir will probably be performing(90% sure).  I have their CD and it is just wonderful.  My husband works with the husband of one of the choir members and we are going to see them at Avery Fisher Hall at Lincoln Center on Friday, May 14th.  They are fabulous.......I know you will really enjoy them.  You can check out their website.  Also, spoke to our lawyer today about "The Moyamoya Foundation---Helping Hands, Caring Hearts", a 501(c) (3) tax exempt charitable foundation.  (Hope you all like the name).  So, glad to hear that you are dong well; by the way, Kris, I still have the staples in the right side of my head (about 7 inches worth) and Dr. Connolly showed me how to carefully wash the right side.  Staples will come out this Thursday.  I will be at the hospital with Donna and Jared on Thursday, when he has his angiogram and MRI, and on Friday, April 30th, when Dr. Connolly performs the surgery.  DJ is an inspiration; if he can do it, so can I.  They are so anxious and frightened, especially since Jared has Down's syndrome.  They are brave people, like all of you.  DJ---Could you please help me and post this in a new topic----about the Moyamoya Foundation, etc.  I want to keep people informed.  The lawyer's name is Tom Wroebel and he is in San Francisco, California.....my girlfriend who is an attorney with the IRS will contact people in the tax exempt status section and speed us through the process....I am fronting all the costs, so anybody who wants to know about this can either post something on the new topic or e-mail be directly......By  August 29th, we will be up and running.......Love to you all, Pat M