Saturday, December 11, 2010

Day four- leaving 1600; Home

During the evening of day four at Strong hospital William and I were discharged. William proved to be a rock star and we were able to leave before Friday which is the typical discharge day for Ketogenic diet admissions. We had so many visitors Thursday that brought snacks, coffee, lunch, reading material ;-) and even presents for William. I can't say thank you enough to everyone who came to visit; it really was such an encouragement during a difficult time. Since coming home William has had terrible diarrhea, thrown up three meals, and still having tonic-clonic seizures; mommy has had just one full out sobbing episode. Fortunately for William we have two different ways of monitoring his health at home while on the diet via blood and urine. So I can tell if he is staying in ketosis and also staying hydrated. All day Friday I was having second thoughts about the diet. Our family views eating a variety of foods as one of life's simple pleasures and now I feel as though I am depriving William of that joy. William faces so many daily challenges yet always enjoys eating..... and now he makes faces when I feed him. Is it worth depriving him of that simple pleasure??? If the diet controls his seizures and he is alert more often... maybe it is worth it. If he is miserable; maybe not. I think for William it is a quality of life issue and I am trying to discover what William's definition of "quality of life" is versus mine and my expectations. Nevertheless; I am pushing myself to be strong and stick with the diet for at least -3-4 months unless it compromises his health. Soon I am going to write a post with pictures of helpful kitchen tools that I think are a must for the Ketogenic diet!!!
This past week two people in my family committed suicide; Wayne's brother and my uncle. I found out about my brother-in-law Tuesday night and received a phone call about my uncle on Wednesday morning. Not only is loss of life so shocking and permanent but suicide in and of itself is horrible. How awful that people feel that there is no other choice but to end their lives; whether they struggle with mental illness or not. How awful for surviving friends and family to wonder if they could have done something different, helped in some way.....
The last time I saw my brother in law was in November. My mom had the twins and Wayne, Dean and I went out for brunch together. I have a vision in my head.... Wayne and Dean in the mini van... me in dad's sports car trying to throw the stick into reverse forgetting to push the stick in and then down. I turned around and Dean was laughing at me... .. he seemed so happy; laughing and winking at me. It is unreal that he is gone. It is unreal that my Uncle is gone as well.... my thoughts are with my Aunt and her children.
My thoughts are heavy with life and loss...... could I have helped Dean more in some way?? I will never know. Wayne will never know..... we sit together in silence with this heavy weight pushing between us. Meanwhile Dean's dog Sheba is sprawled out on our family room floor with Porter..... it's been love at first sight for the dogs... they are inseparable and happy..


  1. glad you are home... are you going to the fcdsn party tomorrow at pieters?

  2. I cannot even begin to comprehend just how difficult these last few days must have been for you. I am truely sorry for your losses. It's a terrible thing to have to experience. And poor poor William. Is he still on meds as well? They didn't decrease any, did they? How is Ella dealing w/ all this? Aww, Erin, u r so strong, you'll come out the other end of all this, and you'll be great the whole time.
    Take care and give the kids...and yourself, a hug from me. Know that I think about you often.

  3. Erin, my heart aches reading this post. You and your family have endured so much in just the past week alone. I am at a loss for words. Please know that I am praying for you and your whole family for strength and peace. I am so glad you are at home now. You are an AMAZING mother and take things with William's diet a day at a time, you will figure out whats the best for him ultimately and come to peace with whatever that decision is. Hugs!!!

  4. Oh Erin, try to hang in there. I am so sorry for everything you are going through. I think a few of us need to get together as a good distraction! You are in our prayers.