Sunday, November 29, 2009


It’s Sunday afternoon, and I am hanging out with Jacob in the hospital. Sarah is playing with a good friend, and Joakim went home to get some things done and then pick up Sarah.
Yesterday, we took turns being with Sarah and Jacob, and Sarah had one of those perfect days where we were baking cookies, watching Christmas movies, and decorating the house. A moment of joy once again.
Jacob seems to be doing a bit better again after a couple of days of more intense seizures. Neurology made a couple of adjustments to his meds yesterday, and it seems to have improved the situation. He’s a true chatterbox today with no intention of taking a nap! I love to see Jacob feeling so much better! His high fever scared everybody, but nothing grew out of the blood culture. Regulating your body temperature is really hard when you have a mitochondrial disorder. We have seen quite a bit of that this past year where Jacob spikes a fever over night, but is perfectly ok the next morning.
Tomorrow, we will start talking and planning for the ketogenic diet. The ketogenic diet is a high-fat, low-carbohydrate diet used to treat difficult-to-control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. An elevated level of ketone bodies in the blood should lead to a reduction in seizures. It’s not a tasty diet, so everybody tells us that we should be happy Jacob is g-tube fed. I am so ready for the next step!
In the past weeks, I have met several engaged women in the community of special needs’ children. This all happens within the walls of the hospital. Someone connects me with someone else. We meet in the PICU, on the 8th floor or the cafeteria.
One of them works for the State, and it was great to connect with her and hear her interesting life story. She showed me a diagram of how families with special needs live in 3 different stages. First stage, it’s all about the family, and trying to simply cope with the diagnosis and getting back to something called routine again. Second stage, the family starts to reach out to the community. They get involved in their child’s community, e.g. therapies, school, and other services. Third stage, the family starts to impact others. They want to do more than “just” for their kids, and make a change in the lives of special needs’ children. As we talked and the reason for us meeting was that I am getting to the 3rd stage. I need to start giving something back of all the knowledge and experience that I have gained over the last 4 years. The seizure project together with Jacob’s clinic is a great example where I can make a difference for Jacob, but also other children with epilepsy.

I have decided to take a family leadership course with start in January that will create an opportunity for me to work on a community project. I already have several ideas, so I am very excited about that. The State also has a Family Task that I am considering joining once a month.

I also met this wonderful woman in the Advocacy department at Children’s. We talked about the work she does, and exchanged life stories. She did two things for me that were very important this last week. She gave me hope that there is a life after Jacob. This is something no one really feels comfortable to talk about, and also my biggest fear. I just can’t imagine a life without our little boy, and she definitely gave me some hope and faith in this area. Secondly, I think I have gotten myself the strongest advocate I could imagine within the walls of Children’s who is not a doctor. She’s simply here for us and Jacob. It’s hard to say how strong connections can simply happen the first time you meet with a person. It’s just right from the beginning.
I am also getting more involved in the Epilepsy Foundation, and got a lot of good tools which helped us to make the decision to put Jacob in a medicine coma.
All of these initiatives and contacts are very inspiring to me. I feel that I am ready to reach out more, and make a difference. It doesn’t change the fact that Jacob’s health is our number one priority. It’s just that I have always had a lot of energy, and most times operate best when I have a little bit too much on my plate!
Hoping for a week of improved seizures for Jacob!
Love, Maria.

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