It was a pretty good day early. Lizzy and I did some school work late this afternoon.. This morning she was not interested at all in school work. We talked a lot, spent time together and NO whining today!! I just love my girl. Elizabeth you stole my heart from the day you were born. I need to cuddle with her tonight.
I got a call from a friend that told me a little guy( Type1) I know was being life flighted to her area because of more ignorance of doctors. He was coming there to get proper care, . The little guy coded twice. TWICE.... today. Taking a deep breath tears were pouring down my face as I was talking on the phone. Man, I really just hate SMA. Thankfully, his Mom called me tonight and he seems fine but she is an emotional wreck and scared to sleep. He is in the PICU until they figure out what is going on.
.I have been there..... Oh man I know she is afraid if she sleeps he will get bad again. Every second of every minute all you want to do is hold them and love them. He is so little. Its breaks my heart. . Is he just sick and needs extra care? I guess we will be finding out because they have done cultures and blood tests. The first thing the doctors said was "Trach". How could you make a decison like that not knowing what is wrong with your child. I am all for getting a trach done if is the right decison for that child.
I just really HAAAAAAATE SMA.
"Please God help this little friend of ours . Please save him. He is so young.
Please God teach these doctors how to care for these kids. Please God.... give these researchers the intellegence to find a cure let it be in our life time. His Mama and Daddy works so hard to keep their son healthy. "
My heart can not bear another loss in the SMA World.
"We believe in Miracles because we live with one"
www.our-sma-angels.com /elizabeth
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