Well its the end of a very busy week.
We are not going to Stanford until October now .
I will check out Amtrak . The MDA recommended them and also a pilot I have talk to thought also they might help. He seems so much wants to help Lizzy. I am not worried about the travel on the train I am worried about the bus. DR.Schroth told me you spend a lot of time on a bus getting to CA when you take a train out there. Lizzy has a power wheel chair and a borrowed manual chair. The sitting arrangements I don't know how suitable on a bus would be for Lizzy.

No one knows what it is like to struggle to pay bills, make sure Lizzy gets what she needs and just paying for groceries or gas for appointments every week unless YOU LIVE it. Its easy for a doctor to say "You must" continue to see me to receive the med that helps Lizzy stay "strong" even though we are over 2000 miles away. Not to many understand the limited resources we actually have. I am just mad that someone can actually control our lives that way. But what can you do? You do what you have to do to save these kids Plain and simple. To give them the best quality life ever. Lizzy is a happy , ornery, non stop talking, sweet, funny, so loved little girl and I will continue to fight for her every day. I have a great friend who took her time to help figure something out for the October visit to CA to help with the flight her name is Karen Slavik. My true friend that cares about Lizzy so much!! We have an organization willing to HELP US because she asked them.In October and the other hopefully we will find help more reources by Feb!! I just feel so bad we have to ask. Ugh.....

My grand-daughter Rachael (12 ) had surgery on Thursday so I didn't get done a lot of what I wanted to get done this week. She did real well and no blatter concerns now and we hope the procedure will help her.

The resouces we have used for 4 years said they would only help us ONLY once a year now. Not a thing about the funding. I guess since the guy that was our contact there that helped us so much left they changed policy. I dont know. I am unclear on what exactly is going there. The woman was NOT nice to me and very unorganized We would love to know where Gene went. He did a great job! and was so great to us!! !
Yes, it is critical we continue to get her out there. The cancer patient flights they told me to contact the makers of the med Lizzy is on to help. The lady I talk to told me they can not help because Elizabeth does not have cancer. I used the line its a "terminal disease" but no such luck either. Even though we do not think of it as that anymore even though it is. I did contact the makers of the med two years ago and they will not help. The company would not even give the dilution to Stanford in 2004 from pill to liquid and that is why the dilution is so unique. The pharmacist had to make the dilution on her own. So until DR.Wang is published it is not going to be revealed. They have noticed the pill form works much different than the liquid form these kids from the trial were are taking. One little guy(Type 2/3 ) quit walking for two years and then was on the med with in a month he was walking again. He is 10 now. He has been getting his med mixed in New York since Feb. Not Stanford.He no longer can STAND let alone walk. That is what I am afraid of. Lizzy losing her strength so fast. She has been on this drug since she was 8 months old and is truly a miracle. A lot of these kids with Type 1 like Lizzy that made it passed 2 can not even sit in a power chair and have to lay flat all the time. are trached or on a bipap 24/7 . Lizzy is the picture of HOPE to so many because she has done so well. She has given so many families inspiration and gave them power to fight.
Jacob is out of the hospital and my brother in law Jim seems to be doing better also.
Good thoughts to all of you!!