A case of the Monday’s

There are those days you wish you could just go back to bed and wake up like nothing happened.

Bad things come in 3’s Right?!

I spent 4hours away from my family on Easter to read 812 pages to prep for a big RFP and then to see the company is thinking of hiring a consultant to do the work and pay them a whole lot of money!  Annoyed!

This town we live in sure has some unfortunate souls.   I wish they could appreciate being a parent to a thriving child and not damage them as they were damaged as a child.
I know we are supposed to find forgiveness in our hearts but boy when you see them breaking the spirit of a child it sure is hard and when others act like the most immature adults you kind of go…what?!

All you can do is hope and pray that something gives them a swift kick in the ass to get it right!

Another low for the day, one that put me in sobbing tears was to find out the the girls pediatrician left the practice.  I seriously started to read the letter posted at the front desk and said I am going to cry.

You all may think I am silly but this woman has been with us from the beginning with Daphne and was the calm to my crazy.  She was complete opposite of me and at times that was frustrating but other times it was needed to give the right balance.  Having a child with a very complex disease like Daphne’s bouncing from doc to doc is not an easy option in my eyes.  This lady went above and beyond for us and exuded care that was recognized by many and I just can’t imagine what took her away.

As I sobbed in the nurses arms she said she would call me as soon as she knew what she was doing and where she would be going.  In the meantime I was left with 1 doc at the practice and the owner that I did not like and who called in the wrong prescription for Daphne after overlooking all the issues of her culture, 2nd doc who just does not get Mito diseases and has the personality of the owner and the 3rd doc who is sweet and friendly like our doc but she is young and just doesn’t get it completely.  She does know about Mito diseases from working in Hershey, PA with the Amish who apparently run rampid with Mito do to the small gene pool but still it is not going to work.

After all of this, we have a sick Daphne that started Saturday and got worse Sunday and today.  She stopped eating, drinking and taking bottles.  Now she is on Albuterol breathing treatments every 4 hours.  I hope this helps.

I get to start my day tomorrow with a 6am conference call to review those 812 pages.

Fingers crossed for a better day!  If not I am calling it quits and starting my weekend early!

xoxo Desirée 

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