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Thursday, March 23, 2017

Another Machine Gone

Today Bethany's vest machine died. She had just started her nebs and I had just turned on the machine that runs her vest and it ran one minute and cut off. I unplugged it and waited a few minutes and then turned it back on. It ran one minute and then shut off with a code in the window and a message to call for service. So, I called and unfortunately it has to be sent back and a new machine sent to us. That meant hand PT for Bethany today. Since having the vest I have been spoiled and doing PT by hand seemed long and actually made my arm ache. This is our second machine to die on us since she got her vest in 2012. Considering how much she uses it I guess it is to be expected. I decided to check out some of the numbers on her machine before I sent it back and I realized that Bethany has done 2,477.4 hours of vest time on this machine. That is a lot of hours for a kid -- she got this machine in August of 2014 so has had it about 2 years and 7 months. I have no idea how many hours she did on the one before this one but probably a little less. But, the bottom line is that when I look at those numbers it hits me just how much time she spends doing her treatments - a lot. 

Piper is doing ok, but still can't walk or put any weight on that leg. Other than the leg she feels pretty good. If this injury hadn't happened I think she would be up and running around. She is definitely getting pretty bored cause just how long can a kid as hyper as she is be content on the sofa? She has played paper dolls and games and watched Veggie Tales and talked and talked and talked. There was one interesting and good thing that happened while she spent her days on the sofa -- I heard her talking and looked over and she was actually pretending with her paper dolls. Unheard of for her. One doll was telling the other one that she had to go away -- far, far, away. The other doll was begging her to stay. This is the first time I think she has actually played like that on her own. I was very pleasantly surprised. 

Piper's numbers continue to go down and that is good. We continue to give her drink after drink after drink to help. We go back to the lab for another check on Monday - nice to have a small break. 

Bethany's machine with the number of hours she was on it. New machine will be here tomorrow afternoon. 

























Where Piper spends her days lately.



























Have no idea what Sarah and Caroline are doing. When I asked them, Sarah just said - we are playing a game. I have no idea what game but they spend a lot of time playing whatever it is.



















































Bella just has to bring me my phone no matter where I am or what I am doing. 




































































































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