Hi everyone, the ball is rolling pretty quick, finally spoke with Teresa in Dr. Steinbergs office, I do need surgery and it will happen in the next 2-3 weeks, am just waiting for scheduling.  For some reason, without thinking, I assumed they would do both sides at the same time, well NOPE!  I will have the left done first, then a week later the right.  I'll be in California about 3 weeks, Ive been wanting a vacation....guess I'm gonna get it...... ;D There are so many positive stories on here, so I'm only a little nervous right now. Best part of all of this.....they are not going to shave my head....woo hoo.  I finally got mad last week, and had a little pity party with the why me's? It was short lived, now just looking forward and trying to make sure everything is order for our adventure!  :P
Thanks for listening!  :D
-Laura

Everyone on here will give encouraging comments! The best is to be positive, make the most of what you got. In June I will be following you with my son Benjamin for his surgery. Hope all goes well, please let us know as soon as you can how things went.

Robert Britton in OKC.

Good Luck!  Yes, let us know how things go!

hi Laura,  my daughter didn't have her surgery with Dr. Steinberg but every one loves him.  My daughters surgeon worked with Dr. Steinberg at some point. He didn't shave her head either. He said studies showed that shaving the head did not cut down on infections.  when she went back to school no one knew whe had had surgery...that can be a blessing and a curse.

Laura, you are in the best hands that could have been possible in this planet.. Stay strong, have faith.. and be positive. Our prayers are with you! God bless you!
Amit

Thanks everyone, I think I'm just in survival mode, trying to get everything together to go to a new city, new hospital, I don't even know where were supposed to go for anything. We will be gone for almost a month, lots to think about. What's getting to me, is how hard this is for my family and how scared they are  :'(, but on a positive note, it shows me how much I'm loved! ;D
I've read so many positive things about Dr. Steinberg and his crew and so many stories of happy endings, I GOT THIS!
Thanks so much!  Happy thoughts!
:DLaura

Laura, if it wasn't for this site, I can't imagine where I would be right now. My 7 year old daughter, Haleigh was diagnosed on July 10, 2012.  She was a healthy child who up until she was diagnosed, only dealt with your typical common cold.  What made us take her to the doctor was a tic she developed, which we found out after the diagnosis was a result from one of the strokes ... she had 5 strokes and according to the Neurosurgeon down here, several TIA's.  We flew to Boston a month and a half later for her to have surgery.  As a parent, it was the scariest moment and just like your concerns, we had all of the same worries.  It's amazing how much inner strength came out that we didn't realize we had to get us through things we never thought we would be dealing with and the support on here has definitely helped!! 

Good luck and just know that you are not alone!!!  I am keeping you in my prayers!!!!

Michelle

Michelle, this site has been an incredible source of comfort and strength for me, everyone really does know how I'm feeling!!!  I have all the confidence in Dr. Steinberg, and his staff, God has blessed me by letting me find this site which led me to him. 

Can anyone tell me how long it is until your family gets to see you after surgery.  It's going to be way worse on them with the waiting.....I'm gonna be off in lala land!

Thanks, Laura

I don't remember it being terribly long after surgery before I got to see my daughter.  I will tell you one thing I wish I had known.  No one told me her eye would swell up right after surgery. It happened pretty fast and it swelled shut. I was scared to death...but it's normal.  Just wish someone had told me, so be sure to tell your family.  :)

Best of luck to you Laura! My 13 yr old son was diagnosed in 2011 and had his surgery (both sides) done in Boston.

We were able to see him very shortly after surgery, once he was settled in ICU. Don't know if this goes for everyone, but his whole head was swollen.... a lot and both eyes swollen shut! This scared me so much, but as each day passed the swelling went down.

I will say a prayer for you and that all goes well!

Whoa!!! Thanks for the warnings about the eyes and face, something I did not know :-/ I will be sure to warn them, I guess since I'm doing the surgeries a week apart, my face will be one big ole puff ball  ;) hopefully they let me back on the airplane...... [smiley=hiya.gif]

Thanks again!!!!
;D Laura

Good Luck Laura, you are in good hand, don't worry. And the eye swelling, it doesn't happen to everybody, I didn't have any! doesn't it make you feel better?

Good Luck on your surgery!  We got to see our son in the hallway as he was wheeled from surgery to Peds ICU.  He asked me "what happened?"  Best words I'd heard in a long time. :)  He had no swelling on either eye.   You will be strong and roll with what comes your way! ;)