Pictures above: Molly and Lizzy
Hayden and Lizzy
We got home Sunday late evening July 26th. We left home July 16th. It took 4 days and 3 nights to drive to California and 4 days 3 nights to get home.
You always like to think about how great a road trip would be until you are on it. I kept thinking what an adventure it would be for Lizzy. It was for her. It was long and hot all the way there.
On the bike it was great not so many years when Paul and I would just take off and go.
Never in my 51 (yep turned 51 last week) years of life did I ever imagine driving 2130+ miles one way with a child and myself sitting in the back seat of a van. We were carrying 200 ounces breast milk there and trying to keep it frozen, a power chair, food to eat on the road 7 days worth of clothes and all the machines,supplies and everything we needed to keep Lizzy healthy. If this trip was not "a have to" thing we would of never went but Lizzy had to go and you do what you have to do for your kids. After we hit IL on the way home I got this overwhelming feeling how glad it was to finally be almost home. Then when we pulled in the drive I wanted to do nothing but go get in my own bed. "There is NO place like home"
DR. Wang told us in his outcome on his trial results that kids on the Hydroxuerya have a 250% chance of surviving over the age 2 than kids with out the med. Wow, the results gave me goose bumps. He has to do one more study for FDA approval since his test study patients were so few. He needs about 3 million dollars to do this. I would love to see this med get FDA approval. So, many the kids that could benefit from this med. NIV protocol and diet and so very much important also.
DR.Wang spent a lot of time with Lizzy and was so excited to see her. I have never seen him like this with her. He was so happy to see her and just kept raving how great she was doing. She has gained 7 pounds since last October. He kept saying how great she looked and how great her complexion was. He asked her to reach for her mouth and she did with no problem. She keep showing him all sorts of stuff. Like how she can roll over pick her legs up, rock back in forth, roll to one side etc. He was stunned. She talked to him but not as much as she did Jonathan the coordinator.
The Pharmacists that have been working with the trial came out to see Lizzy. They have known here since she was 8 1/2 month old. They told her what "a Star" she is and that she made DR.Wang "a star" . Total admiration for her. Lizzy is quite a miracle. It makes the ride to CA that was not so good seem quite worth it . They got to see her also in her power chair.
We got to see the Calafiore's !! I was great to meet them. Hayden looks great!! Lizzy fell in love with Jennifer and Hayden. Chris is such a great Daddy also. It was very great to see a newer family that really is working so hard to help their daughter. They fed us dinner!! It was great!! They are so cute
We had a great time with Molly and Andy. They had us over a few evenings for dinner. A cookout one night and lasagna the last night there. They have a friend that is a chief that made a chocolate torte "that was to die for" it was great!!! He also made a great lasagna. They treated us to the museum in golden gate park(the aquarium part that Lizzy just loved) and lots of great conversation. It always so nice to see them. Paul finally got to meet them and he loves as much as we do. Every night on the road Lizzy would say where is Molly and Andy at!! She wanted so much to see them. They finally got to see the "Real Lizzy" and how ornery she is.
I had an accident a day after we got to CA on Monday the 20th. A bad one... Lizzy and I were in the parking lot at the motel. They have murals on the wall that I wanted her to see. She was in her power chair and I was walking on the side of her with her suction machine. So, I turned and said "Lizzy turn this way and look " well..... she clipped me some how and I fell over her power chair on top of the suction machine. Lizzy is no way was hurt it was me. I hit my face on the pavement (big ol bruise on my face and a eye) . I have bruised chest and side. I still hurt very bad. It was not Lizzy's fault. Paul had turned up her chair to 7 and I am not at all used to her with those higher speeds. I have no insurance anymore so if I do not start feeling better by Thursday I will call DR. Hough. My face feels better but my chest and side still hurt. I have been taking Motrin and a pain killer at night.
It was quite an experience.
Thank you for all that help us get to CA, home and helped us while we were there. Your support and prayers means so much to us. We are home and Lizzy did great. It warms my heart to think how so many cared so much about Lizzy to help us get to California and home safely.
Elizabeth is truly a wonderful kid and so full of life. I taught her at a very young age "You can do anything you want to do some way some how."
As Lizzy says " I love you all from my heart to yours"
"We believe in miracles because we live with one"
Many prayers for the Panno family. Our neighbor Frank lost his son John while he was jogging last Thursday. John was a year and day older than me. So very sad to come home to this news.
http://www.pontiacdailyleader.com/obituaries/x2141121685/John-J-Panno-52-of-Pontiac?popular=true
www.our-sma-angels.com/elizabeth
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