Upcoming Adventure (Spinal Muscular Atrophy)

Picture above is Lizzy's friend Charlie and Lizzy (He is as ornery and she is)

Its day 7 and no swine flu here. There were a few cases reported after the FSMA conference and many of us were very worried . A better way to describe it is "FREAKEN OUT!! Doc here ordered Tami Flu for Lizzy that I have on hold at the local Mom and Pop Pharmacy if Lizzy has any one the symptoms.

Lizzy went to down town today to the "Hang Loose -Wall dogs" doings with Paul and Christen. She loved it but did no stay long due to the HOT weather. I had Corbin here at home.

Well, with the NEW DOT Guidelines for flying looks like we are driving to CA this month that is its Total Estimated Time: 31 hours 20 minutes Total Estimated Distance: 2136.69 miles . I pray to God we can raise enough money to go. Lizzy has to get the med and we HAVE to do this. These new guidelines have made it hard for all people using c-paps, Bipaps and ventilators. The manufacturers have not a clue on how they are suppose to handle this. So, until they get this figured out we will not be flying anytime soon. It always some kind of brick wall we face since Lizzy's diagnosis but we are always able to figure things out. Praying a lot helps. The plan is meeting up with the Goodson's in Iowa City and driving with Jennifer and Jake all the way to Palo Alto.
Info on New Guidelines for flying:
http://www.mda.org/publications/Quest/extra/jun09/air_travel.html
http://www.mda.org/publications/Quest/extra/jun09/vacations.html

I never want Lizzy to know we have worried so much to get her what she needs. We do not discuss this around her. She thinks we are going on an adventure on the way to see DR.Wang. She is VERY excited. I would give her anything I have to help her get what she needs. She is my heart. She is a very special little girl. We are going to find a way to do this for her.

Many prayers for all the sick kids and adults out there. Many Prayers for Jerika who had back spinal surgery next week.

Add us to your prayer list to help us get to CA safely then home safe.

We believe in Miracles because we live with one.
www.our-sma-angels.com/elizabeth