We just got back home from Madison,WI. It was a good trip. I did not learn a whole lot as I already know a lot of what was talked about It was great meeting other families and seeing some of the ones we have met before but not seen in a long while.
I loved finally meeting Barb (Drew's grandmother). I just wish we could of spent more time together. We met Drew's Mom and Nanny too.
I was interested in the PT/OT a lot. We need to get Elizabeth back in to swim therapy but.... how? Our PT dropped Lizzy and we have no other place with a private pool we can use. Very Frustrating to live my life sometimes. We have to figure out another option as we have exhausted all we had. I can talk more to them on our visit to Madison this week maybe they can help us figure this out.
We are getting ready for another trip to Madison for Lizzy's Muscle clinic visit. We will be there all day on WED. I am worried about Lizzy shoulder blade but I think once I get her back into swim therapy it will do better as before.
My ears still feel like I am UNDER water. Darn allergies any way.
I have lots to do before tomorrow but thought I would quickly update.
I had a letter from Ben(Lizzy's first crush - counselor from CCK) and Lizzy was is inspiration to decide to become a doctor. He is working with DR.Brenda Wong in Ohio. Reading his letter made me cry. It touched my heart so much. I am glad he sees what I see in Lizzy. Her determination to do what ever it takes to fight this disease and to be happy. She is always smiling. I forgot tell him Lizzy wants to be a doctor too. I am sure she will.
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
For my friend Vince I am posting this for him from face-book
Ride for Sophia's Cure
Knock Out SMA
Host: www.nomorefootprints.com
Type: Causes - Fundraiser
Network: Global
Start Time: Tuesday, September 15, 2009 at 2:50am
End Time: Thursday, November 12, 2009 at 5:50am
Location: Wantagh, NY - Irvine, CA
Phone: 5162140348
Email: sophiascure@aol.com
DescriptionThree men from Long Island, NY are going to ride bicycles from Wantagh, NY to Irvine, CA to raise funds and awareness for SMA, the leading genetic killer of children under age 2. They were inspired by the story of Sophia Gaynor from Wantagh, NY who has the most severe form for SMA and her parents quest to find a cure for this dreadful disease. They are going to ride their bikes for over 3500 miles to try to put an end to SMA.
We are not asking people to physically attend this bike ride, but to show support for Ryan, Mike & Dennis's efforts and make a donation. Your donation is tax deductible.
They will be travelling in the following cities:
Wantagh, NY
Philadeplphia, PA
Baltimore, MD
Washington D.C.
Winchester, VA
Athens, OH
Cincinnati, OH
Seymour, IN
Washington, IN
Salem, MO
St. Louis, MO
Jefferson City, MO
Sedalia, MO
Overland Park, KS
Newton, KS
Dodge City, KS
Lamar, CO
Pueblo, CO
Salida, CO
Gunnison, CO
Delta, CO
Grand Junction, CO
Green River, UT
Nephi, UT
Delta, UT
Ely, NV
Tonopah, NV
Henderson Park, NV
Death Valley National Park, CA
Dunmovin, CA
Johannesburg, CA
San Bernardino, CA
Irvine, CA
To make a donation to this ride please visit: http://www.fsma.org/index.cfm?ID=4535&TYPE=1392
For additional information on how to make a donation please contact Vincent & Catherine at sophiascure@aol.com.
If you are interested in volunteering to assist the bike riders in any way, please contact Debbie at greaterny@fsma.org.
Miracles do happen...let's make one.
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