Long over do update - Living with SMA

Have you have thought you would never get caught up? Well, that is me this week. Then. I was messing with my AOL trying to get it to quit freezing on me and I deleted all my emails.... oops if you emailed me this past week please send again. 

Its been a very trying week. Had some bad days with an unrelative person that I will not disclose. You get to the point sometimes you JUST CAN NOT TAKE IT  ANYMORE UNNECESSARY BS. You get this over whelming feeling where you want to just shake the living crude out of them and say "Hey, I am JUST DONE ". Well, with not going into details I had enough I blew up .... Any way things are better I feel like I shot off like a volcano and my mind and body are at peace right now. It took a few days but I am okay. I am a survivor. LOL 

We do not have to go to Stanford until June!!!!! Is that cool or what? We are ecstatic. A weight has been lifted off our shoulders. The flight drama has still not been resolved as of yet I guess. Still no info on the labeling for the machines. We just know Elizabeth present bipap is not being made anymore and the new one we are hoping she gets is approved for flying.

We have been thinking about spring and summer. We have a trip to Kentucky in April, a trip to CA in June and one to Minnesota . So we will be very busy. They are doing a fundraiser in May for Elizabeth for our trip in June to drive to CA. Jessica ( my daughter)is also coming to help drive. So, It sounds like a busy summer.

I am on a project that I will post at a later date when I get it done. 

I wanted to  post this in my blog. These rules and Lizzy's doctor helped me keep my sanity. 

A very wise man once told me and I now live by these rules myself:

Three Rules in Dealing with Families 

Three  golden rules I live by ( and as much as I am involved in SMA the

> rules are essential to maintain sanity and a reasonably normal personal

> life) and never ( or almost never) violate. 

> 

> Rule one;  you cannot , no matter how hard you try , help everyone

> 

> Rule two; ( this is the biggy) you can only make a difference in the

> ones that truly want to be helped

> 

> Rule three; if you have any trouble and get frustrated see rule one

On a good note Paul is the top of his class!! 

Elizabeth's attention span just improved over 50% in testing she had on WED. 

Many prayers for Sophia Doebbert, Chase and Jacob Goodson. Sophia and Jacob are sick and Chase is having some plugging issues. 

"We believe in miracle because we live with one"

www.our-sma-angels.com/elizabeth