Sunday, January 15, 2012


Yesterday, our little boy was sick. He was sharing his sister's cold. He had a low grade fever, was lethargic, had labored breathing, almost wheezy breathing, and tons of secretions. His heart was working hard, and the beeping alarm from his pulse ox was constant.

Hours just passed by when you're constantly assessing your child, checking temperature, checking heart rate, checking oxygen level, giving Motrin, giving extra breathing treatments, making sure the wash cloth is cold on Jacob's forehead. The big unspoken question in the room was: is Jacob ER sick or can we handle this at home? The big worry is always that Jacob can crash or get worse so quickly, so you don't want to wait for that to happen.

In the end, we kept him home, which clearly with how Jacob looks today, was the right decision. He wasn't seizing. He didn't have a high fever. What would they do in the ER that we could not do at home? If we suspect a bacterial or line infection, we're in the ER right away, but this time we knew it was a cold.

What yesterday proved us is that we're out of practice taking care of sick Jacob! I had forgotten that worry deep in my stomach as I was multi-tasking through Jacob's care. So, I went and looked in my diary for the last time Jacob was in the hospital. It was the night of June 19th. Wow - Jacob has almost been home for 7 months! Over half a year. I don't think that has EVER happend in Jacob's life.

So, what happens when you're not constantly living between home and Children's Hospital? I would say that we are able to put our lives on "cruise control". We are able to plan things, and the things actually happen. Many people have told me lately that I look happy and healthy. It is amazing what sleep, home cooked food, and exercise can do to you - and yes, less stress and worries.

I am also busy, which I love to be :- I can dive into my work, and keep up with the busyness of it. I can get involved with stuff that is close to my heart. We're planning out the year for Miracles for Mito, and I am excited that we will further collaborate with the Mito Clinic, and raise more funds and support for families this year.

I have also gotten really "sucked" into Children's Hospital. I will continue to serve on the Quality & Safety Committee of the Board. I love that the Board allows me to have a voice in the high-level discussions and decision of the hospital. And they so appreciate the input. It blows me away every time.

I also was selected as the Chair for the Family Advisory Council of Children's Hospital. The hospital uses the Council to get input from families on different policies, projects and issues going on in the hospital. I am getting ready to lead the first meeting, but first have to present to the Executive Team of the hospital what our new steering committee wants to accomplish this year. It is a flurry of activities, and sometimes I am asking myself why I love this kind of stuff, but I do! I really do.

I also joined a cross-functional group at the hospital working on how to improve implementation of DNARs (Do Not Attempt to Resuscitate). More on that in another blog post! The first meeting was intense.

And end of the month, I am taking a training to become a certified SibShop instructor. Sibling issues related to having a Special Needs' brother or sister have always been close to my heart. With this training, I will receive the tools to run my own SibShops for siblings of Special Needs' children. I have no idea when I will find the time to do this, but I couldn't pass up on this training opportunity :- I will keep you posted on how it goes!

And for Jacob, he is such a happy camper with the exception of yesterday. We haven't seen him this happy and content in years. This week, he made the most beautiful bracelet for his night nurse's birthday, and he picked each and every bead with his eye gaze! Thanks to his day nurse Gemma for her endless patience.

Jacob is also going to school, and it's January! That is a first for him! There is also hope that his school will offer a kindergarten class next year. Noone would be happier than us, if Jacob could stay at Bal Swan!

Our basement contractor also made a ramp for Jacob that he installed in our garage this week, which will help us to get Jacob in and out of the car! He just pulled up his car one afternoon with his gift for Jacob. I love this kind of kindness.

So, we're all hoping we can stay in "cruise control", and cruise to Jacob's 6th birthday coming up at the end of this month!

Much love,


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