My daughter Annamarie was diagnoised in Oct of 2007.  I found this site and January, when I was told to wait and see if she had another stroke or if she was having seizures.  We contacted Dr Steinberg and were told she should have surgery.  Annamarie is 16 and had down syndrome so she is on Medicaid.  She had more symptoms and had another MRI/MRA and her neurologist now agrees she needs surgery.  Well, we finally have Louisiana State approval for the surgery.  We are waiting for a contract with Stanford now.  So, hopefully she will be having the surgery soon.  Thanks to everyone for their love and support.  This is a great website.  Will keep you informed as things progress.

Hi Margaret,

It has to be a relief for you to know Annamarie has been approved for surgery.  I'm hopeful the state of Louisana will work out a contract with Stanford.

Please don't hesitate to ask any questions as we are here to support you through this journey.

I'll be watching for your updates and know that you and Annamarie are in my thoughts and prayers.

Hugs,

Lore

Well, the contract was signed today.  We have a date for surgery.  We have to be at Stanford on the 8th of April to start tests on the 9th.  Surgery will be the 15th of April.  It seems like we've been waiting so long.  I'm really nervous, but I know it must be done.  I'm really scared for her, but she's a trooper.  Although, because of her downs, she really doesn't understand it all.  But she is good.   I know everything will work out and be fine.  Thanks for the prayers.

Margaret

Hi Margaret -

Annamarie will definitely be in my thoughts and prayers.  As Lore said, don't hesitate to ask questions.  We're here for you!

-Shari

Hi Margaret, I'm glad you have set the date for Annamarie for surgery, Annamarie and your family is in my thoughts & prayers.  Please keep us post.
Kieu

Hi Margaret,

Glad to hear the contract was signed and Annamarie's surgery is scheduled.

It does seem like a long time but know that two things are behind you - the signed contract and the scheduling of the surgery.  Now you can concentrate on getting Annamarie well and moving forward.

The Stanford MM team is super and they will take good care of Annamarie.  You are probably more nervous and scared than Annamarie and understandbly so as she is your precious little girl.

Please know that we are here to support you and you both are in my thoughts and prayers. Many have traveled this same road and with children who have downs syndrome. Please don't hesitate to ask questions.  

Keep us posted on Annamarie's progress.

Hugs,

Lore

We might run into one another!  My son (Tom-he's 27) my husband (Gary) and I are flying out on Wednesday (3/26) for tests on the 27th and surgery on April 2nd.  We're scheduled to fly home on the 11th of April.  I know what you mean about feeling like it's taking forever.  Tom's symptoms started in July 2007 with mini stokes (he wasn't diagnosed then) and then again in January 2008 with a brain Hemorrhage.  I'm also really nervous but you know men . . they seem to be taking this much calmer than me.  I know everything will work out fine but they seem to "really" know everything is going to be fine.  Everyone from Stanford seems to be very knowledgeable and caring, I'm looking forward to meeting Jill, Teresa and Dr. Steinberg.  First I couldn't wait for something to be done and now I can't wait until it's all over.  I'll pray for you and your family, it works!  I can't thank this site and the people who've contacted me and prayed for us enough.
Love,
Calee

It great to know someone I've taked to here might be in town when we are.  It's almost like we know each other, we have so much in common.  We will be in the Childrens Hospital.  Still don't know where we will be staying.  Trying to get into the Ronald McDonald house, but its full right now.  We should keep in touch and maybe get together when in California.  Where are you coming from?   We are from Louisiana.  Your right though, you wait so long for the information, then when it comes, it's like its really true.  The ups and downs are unbelievable.  One day you think it will never happen, then the next day its real and your scared to death.  My only consalation is that Annamarie really doesn't understand exactly what is happening so she is not really scared.  She has had surgery before so she understands that part, but not the reality of brain surgery.  Keep me informed about Tommy as well.  Hope to see you in california

Margaret

Margaret,
Well, we’re here and have met Jill, Teresa and Dr. Steinberg.  Tommy has one more test in the morning and then surgery on Wednesday morning.  My older son Gary Jr. and his fiancée arrived tonight, the more support the better.  We’re staying at the Sky Ranch Inn and Gary Jr. and Mara are staying next door at the Days Inn because they allow pets, they have a puppy.  Both motels are reasonable, tiny but clean and close to the hospital.  There are definitely very caring and thoughtful people here at Stanford and remember you’re in our thoughts and prayers.
Carol  

That's great news! YOu must be so relieved.My daughter also has Down syndorme.She's 11 yrs old,her surgeries were 6 yrs ago this month.She had several storkes priar to surgery but has been stroke free ever since.You family will be in my prayers.
Mary Grace

Callie,

Glad to hear everything is going well, I will be thinking of you tomorrow.  We leave here on Tuesday and start tests on Wed. Her surgery is the following Tuesday, just 2 weeks from today.  We will find out tomorrow if we get into the Ronald McDonald House.  If not we'll be looking for a hotel as well.  Hope to see you when we are in town.

Mary Grace,

It's nice to talk to someone with a child with down syndrome.  And so glad to hear everything went well with her surgery.  

Will keep in touch.

Margaret

Many prayers today that all the tests go well.
Mary Grace