Sunday, August 29, 2010


It's that time of the year when you start to get into a routine again with school starting up again. It is still warm in Denver, so you don't feel to completely get out of the summer breeze, but fall is slowly coming to us as well.
Sarah has started third grade. She is off to a good start with a great teacher, and many friends in her class. She is eager to learn, and motivated to be back in school! She is also starting soccer this week. Joakim and I will join the pack of parents that drive their kids back and forth to practice, and sit and watch soccer games on Saturdays. We're excited, since this is something Sarah picked for herself. She is also excited to join the school choir. She will also continue with girl scouts and Swedish school, so she is in for a busy fall!
Jacob is starting back at Bal Swan on Tuesday afternoon. He will go two afternoons a week, and we will have him go on his "good" days, and stay as long as he pleases, but have no pressure to keep him there for the whole afternoon. We're hoping he can enjoy school this fall before winter arrives, and we'll keep him at home again. Jacob will continue with warm water therapy on Monday mornings, which we both enjoy as well as his other therapies throughout the week.
We're excited to continue to taking down Jacob's seizure medications. We drastically took down one of his seizure meds that makes him lethargic. We're happy we were able to do it without breakthrough seizures. Jacob is more alert now, especially in the mornings and early afternoon. He also sleeps less during the day, which is also a sign that we're doing the right thing! We're now working on removing one of his other meds completely. We go slow, so it is a 2-months project, but we're hoping we'll succeed with that as well. We're then going to look at a third seizure med to take down or completely remove. We're also excited that Jacob has stayed healthy and is going on his 7th week out of the hospital!
Jacob will also join a clinical trial at Children's Hospital for getting the FDA to approve a pediatric Bi-Pap mask. There are today no masks for children for Bi-Pap or CPap (they do exist in the rest of the world) in the US. We're excited about this project, since it's a clinical trial without risks involved - only the benefit that Jacob gets a mask that fits his little face, and will make him sleep better at night!
We have also heard that Jacob's metabolic doctor has ran tests on Jacob's fibroblast (a type of cell), and has found some results that points to his mitochondrial disorder, and that should help research in this area. We're now waiting for his doctor to call, so we can give him consent to run it clinically and publish the results! We know this doesn't change Jacob's condition, but anything that can help our researchers to find out more about mitochondrial disorder is a step in the right direction!
I am busy with the kids' activities, work, and my friends. I am so happy that I can still work, even if it's only about 10 hours a week, but it does give me a fulfillment, and I am excited to always have new training projects ahead of me. I am also in for a very busy fall at Children's outside appointments with Jacob.
The sibling support program will start on Monday September 20, and run for 8 weeks. After having worked through some staffing challenges with the Butterfly program this summer, we have decided that a more condensed program will work the best for them. Sarah and I will be heading down there every Monday night this fall. We're hoping to get the Butterfly parents to connect with each other as well when the siblings are in class. I will be responsible for that part of the program as well as being a substitute if one of the instructors can't make it.
I am also joining the Quality Board of Children's Hospital in October in addition to the Holiday Committee. I can see that they are a bit nervous to have 2 parents join this Board for the first time, since Board members are attending the monthly meetings as well as the sensitivity of the information being shared in the meetings. I need to go through training before joining this board as well as having been told to put on my "high-level hat" as I am in those meetings. I am excited to join this board, and use some of my experience from working with executive members in my past jobs.
We're also going to take our epilepsy parent group (also known as "super moms") to the research table to see how this group can be replicated within Children's.
Me and three other moms are also continuing to build up a group for Mitochondrial families. The goal is to do our awareness walk next fall, and we're also setting up our first get-together in September.
I know that my plate is more than full right now, so it has to be "no" to any new commitments this year! I am just really bad at that.
Joakim is in for a busy fall at work, but he doesn't mind, since he likes what he's doing and the people he works with. He is also starting up floor ball again with his Swedish team, and is hoping for a few more rounds of golf this fall. He is also excited to come along to Sarah's soccer games, and to have Jacob back in school! Something we were not sure would happen again.
We know that this all just works out, if Jacob stays healthy. If we start to spend weeks and weeks at Children's, our plans will change. That's fine, and we'll just go with the flow. We know who is the boss around here...but we will still keep the plans coming. That's the only way to stay sane, and enjoy life!
Love, Maria.

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