March 23rd: I have posted about this during the past two years but I need to reiterate how important it is. I pray that you will never have to go through anything like Scott and I did as parents but even the smallest medical needs require YOU as a parent to be your child's advocate. It is your responsibility to understand, research, seek out resources, ask for a second opinion and make decisions based on what is best for your child. I cannot tell you how many times Scott and I had to make difficult decisions- life or death decisions and small decisions. But we always maintained that we will do what is best for our girls not what is convenient for us or easy for us. A trach certainly isn't easy, a feeding tube isn't easy but these were decisions that we had to make and we moved forward because they were the best decisions for our girls. We have seen both spectrum's in our experiences. Parents who have traveled hundreds of miles, gave up there own interests or careers to do what's best for their children and we have seen others who are afraid or don't look at what's best for their children.
We would have given up everything that we had to do what was best for Eden when she was so sick. We sacrificed so much but not for one second do we regret any decision we made for her. She had a beautiful life, she was loved so much and by turning to God to help us make our decisions we did what was best for her. Eden was too sick and ready to stop fighting and she went to be with Jesus where she is perfect and healthy.
PLEASE, PLEASE be an advocate for your children. When you medical decisions act in the best interest of your children.