Thursday, May 7, 2009


I resigned from my job this week. It was not an easy decision at all. I have a great team and a great manager, and in many ways a very flexible job. The decision has grown slowly as Jacob has been in and out of the hospital this spring. Things are simply not heading in the right direction, and we as a family need a break, a possibility to recharge, and time to focus on Jacob's health and happiness. There are certain things you only get one chance to make right. If you have a child with a life limiting disorder, you simply have to cherish each day. There can be no regrets the day Jacob decides to leave this world. We need to learn to "live now". With that in mind, this is the right decision.
I am also hoping that my decision can inspire others to do the "right thing". I am not necessarily thinking career wise, but I do think many have things they should make decisions about, but they decide not to due to the decision being too big. I encourage you all to think about what that thing is for you - and fix it. In my case, it has actually turned into something positive. My company really wants to keep me in any shape or form, and it looks like they will tailor a position after what I can offer them in my current position with Jacob. This will give me an opportunity to still stay in the work place, but to a much lesser extent than today. I know I am very lucky to be in this position.
I also had a really nice invitation yesterday. The head of the special care clinic at Children's hospital selected me to participate in a research project for clinical care of children with seizures. It's a project across multiple clinics in the US that will come up with a care plan for management of seizures in kids. I will be the parent representative, and work with different doctors at Children's as well as other clinics. The first meeting is in Atlanta next week. With such short notice, I can't attend, but there will be several meetings throughout the year. Children's will cover all my expenses, and I was pretty flattered that Jacob's doctor felt I was the right parent for this job. I am very excited to take a more active part in Jacob's care and kids in similar situations.
Jacob is doing better, but still on IV antibiotics. Joakim and I are pretty well-trained in handling the antibiotics through Jacob's port at this stage. Jacob struggles with more movements than normal, and hopefully they can decrease as the bacteria in his blood disappear. The doctors are starting to talk about removing the port, if he continues to have line infections and put in a new one on the other side of his chest....I am just not ready to go there yet...
Jacob was also seen by the head of the metabolic clinic a week ago. The purpose was to do a full workup. We spent 3 hours with Dr. Van Hove. He told us more about Jacob's 2 years old muscle biopsy than I have ever heard. He also thinks Jacob has a mitochondrial disorder, but he wants to know which one. He is not giving up that search. He will use up the rest of Jacob's muscle and spinal fluid for further tests. We also did a lot of additional blood tests when we were hospitalized last weekend. He also thinks we need to do a liver biopsy, and it will most likely happen in June. It is so nice to have someone take on Jacob's case again. We haven't had that in a long time! Van Hove is from Belgium, so he also had a very good picture of genetic disorders in Europe. He will test Jacob for mohr-tranenberg disorder from the south of Sweden where Joakim is from. He is also researching genetic disorders from Finland where my mom was from. I was simply exhausted after the 3 hours appointment, but left with some hope after having met this very brilliant doctor.
We're leaving for Disney World and our Make-A-Wish in 12 days. Please send us positive thoughts that we can go, and we're not in the hospital on May 19th!
Hugs, Maria.

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