Tuesday, February 10, 2009

glimpse of Spring? (Spinal Muscular Atrophy)


The weather the last few days has been a great. Its been in the 50s and 60s and its February for Pete's sake. Is it a sign of Spring? No such luck its supposed to snow on Saturday. It was nice while it lasted!! Lizzy is loving getting outside soaking up that Vitamin D and running around in the mud!!

Lizzy was fitted for her new AFOs and TLSO today at Plattners in Peoria. We love Tony Plattner he is so great with her. She picked out yet again the Leopard design. He using a scan to create the mold for her TLSO and works out great. We were in and out in about an hour. Her foot on her left side is about a -10 since she pushes her foot out of the AFOs on th left and on the right foot she is neutral so that is great!!! Last year before serial casting she was a -23 and a -32. Tony is also going to try to help figure out what to do about her elbows.

Last night we took Lizzy to a HOG Chapter meeting in Peoria at Walter's Bros Harley Davidson for the MDA. She loved it. She talked with the microphone and was a natural. She told them all about herself. She said "My name is Lizzy. I love Hannah Montana, I like Leopard stuff, etc. " They all laughed. She had on a a blue jean skirt (One of many she loves to wear), Black lace shirt, leopard Tights and black boots. She was styling!! She will be going to a lot of the area Hog Chapter to introduce herself and represent the MDA.

We are still watching my great niece and I she kind of like me. She dosent cry for me like she does her Mom and Dad. I just have the touch!! LOL I love babies. She is two months old now.

Papa...... uhhhh what a painful last few weeks for him. He got one tooth pulled on friday and vomited all weekend. He had lost 15 pounds since last WED as of yesterday. I got him to drink unflavored pedilite. Just sip it and he kept it down I made him go to the doc and he got some nausuea med. He is getting the rest of his teeth pulled on friday.

RSV is out there like crazy and we are scared to death Lizzy will be getting it with No RSV shot this year. The state denied us with two LMNS!! So,we are cancelling our Feb visit to DR.Schroth and making it for later in March. We can not take the chance Lizzy getting sick before our CA visit or at all!!

Many Prayers for Sydney, Jacob, Courtney Smith, Addy , Ally and so many more kids in the hospital.

Congrats to Liz, Tim, Turo and Grandma Sallie on the new little baby girl.

We believe in miracles.
www.our-sma-angels.com/elizabeth

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