Summer is winding up with some really hot days and fall is sneaking up close behind. Its been a good summer with lots of emotions and changes in our lives. My grand-son Reed graduated from high school and Rachael my grand-daughter graduated from eighth grade . Reed went to Basic for the National Guard.We drove a total of 4600 miles for a trip to Stanford and the FSMA conference with the help from two organizations. We went to Minnesota and stayed with Drew and his family. We saw the Doebberts while we were there. Drew, Sophia and Lizzy went to the American Girl Doll Store restaurant. We had a fabulous time while in Minnesota. Good people, good time and good food!!
We went to Madison ,WI for muscle clinic. Faced the fact that Elizabeth might need spinal surgery. That was a hard to deal with but I have a little help stretching Lizzy now from Christen.
We also have 2 other professionals help us with helping Lizzy that does MF release and swim therapy. They all agree Lizzy needs to get in her stander daily to help her more. Lizzy breaks out in a rosy rash and holds her breath and says she can not breathe when we put her in it. Truly, she does really its just she wants to stay on her computer all the time. She has gotten really good at doing this sort of thing when she does not want to do something and manipulating us!! Well .....she has had almost 7 years experience and knows how to control us!! We are trying to avoid surgery she needs to cooperate!!
Lizzy saw DR.Hough today for the very last time today. He told her she needed to wear her knee immobilizers , Hand splints, elbow splints( when she gets them) and get in her stander.. He calls her "his miracle." That is where we get the our slogan. " We believe in miracles because we live with one!"
She came home and guess what? She did not fight me putting her hand splints on and her knee immobilizers on!! I saw him too. Probably, going to cost me a small fortune paying his bill but he gave me a shot that will get me through the next 4-6 months with out pain in my thumb and my allergies. The only problem is my appetite will insatiable, I will be over emotional( Imagine that) my face will be beet red for about a week, I will not sleep for a few days but not to have pain it is worth it!! It will help my back also. So, weighing out the side effects compared to pain I will take the side effects!! So, I guess I will remain red faced, fat and emotional for awhile longer.
It will be so sad him leaving. Breaks my heart.
Lizzy is sitting here singing county to the show on TV. She loves country. She was on her computer heard Kid Rock shut her computer off and said okay" I am done I want to watch TV. When she was at the MDA Telethon a few years ago when she was the Good Will Ambassador for central IL and getting a treatment with her silk pjs on she heard Kid Rock on the TV at the hotel and was so engrossed in watching him. She loves to sing so much. She is watching him and has not moved a muscle!! Its like she is in a trance.
Well, they have finally set the date for Elizabeth's Benefit. The committee has agreed on October 23 at the Crystal Palace in Pontiac,IL Kids benefit part starts at 2pm . Many things going on. the benefit is from 2pm -1am then they are doing a dinner , 50/50 drawing, Auction etc. The donations from local businesses have been rolling in. Its amazing!! There will be a country band and this is going be so great! I am so excited its going to happen!! This benefit will help so much with all the things Lizzy needs so badly and help with the doctor visits!!
Thanking for keeping updated on us!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
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