hi.
      just wanted every one to know that i have decided to leave things the way they are i think savannah has to much brain damage to go throw any more procedures i feel very lucky to just have her alive ,maybe i am wrong but i dont know i feel like i am very tired and i just couldnt imagine opening up a can of worms i hope that you will truely understand my decision if you could meet savannah you would understand even though she is severly handicap she is very happy i dont want to take any chances cause i am really scared of what i was about to get into i am sorry i hope noone is upset with me

OMG Sandy, eveyone will understand. No one knows your baby girl like you do. Even Dr. Scott agrees with you and he's one of the best doctors for children there is. So, no one will judge you sweetpea! Just know that y'all are family and in our prayers always and we're here for ya girl. [smiley=hug.gif]

Mar

Sandy!

Of course we understand and respect your decision 100%! What kind of friends would we be otherwise? You looked for  information and found out the alternatives/options and made your decision as a loving mother and no one in this world could ever do it better than you!!!!
I hope you truly feel that we are with you all the way.

Love,

Annica

:'(you're making one of the hardest decisions of your life... no one who's been through this will find you at fault... may God bless you and keep  your hopes up. [smiley=hug.gif] Sue

You will never be judged for your choices here. We all know how hard of a decision this has been for you. I will continue to pray for you and your family.

Sandy - Of course we support your decision!  Who are we to judge?  You make the decisions that are right for you.  We are happy that we were here for you to talk to and get information about making the right decision.  I wish Savannah only continued happiness!!  :)

-Shari

You are doing the right thing Sandy. You know your Savannah.  Just know we are here for you and your family. You will all be in my prayers.

Take care and God bless.

~Fran [smiley=hug.gif]

All I have to say is go with your gut.  I almost called at least ten times to cancell Arianna's surgery.  I have learned that would not have changed the outcome, but I would have had a little more time with her.  We all do what is right for us and we will always be here for you.  Peace and strength to you.

Sandy----you have all of our support and prayers, of course, and we are behind your decision 150%!!!!
Please send me another e-mail---somehow it's just not coming through about "your daughter's story" and I will work on it within the next week before my next EDAS surgery, ok????Love and best wishes to you....YOUR NEED IS OUR CONCERN........pAT

Sandy,
         Only you knew the right decision to make and you made it. How could we not support your decision, enjoy this time with your little girl and cherish every moment as I'm sure you are. My thoughts and prayers are with you.
                   Nancy [smiley=hug.gif]

sandy
          you have been forced to make decisions that no parent should ever have to make you have done what you believe to be the best chose for your child that you love with all your heart no one would ever judge you for that my son jared has down syndrome and mm i to have to make all the decisions for him and i know what you go through it is so scary to alway try to do the right thing for him we just have to trust ourshelves and trust in god my prayers are with you and all your beutiful children i have 4 daughters besides jared and am having them all checked for this disease 2 daughters have had fainting episodes in the past and one has frequent headaches i am just praying that they to are not mm sufferers god bless donna

Donna----just saw your post about the girls' fainting episodes and headaches....I was not aware of this.... Do you think you should get in touch with Dr. Sacco or Dr. Chong about this.......212-305-1710......just a suggestion...Dr. Chong has been promoted to Asst. Professor of Neurology at Columbia Univ. College of Physicians and Surgeons.....let me know...hope you are all well........SAndy, you are still in our thoughts and prayers......Pat

Sandy,
             I don't mean to scare you but thats how Mandy started out she called from work one day out of no where because she passed out and smashed her head on the floor. It continued to happened, then she started to have what they thought were seizures a year before she was diagnosed, had she been diagnosed properly at that time she may not have had all those stroke.
My son is 11 and has been having alot of headaches but he's connecting them to heat, I sure hope so I will be keeping a close watch however.
                            Nancy