Saturday, October 1, 2011


Jacob ended his therapy session outside on the front lawn today on his colorful therapy mat. As his therapist Jill did his final stretches, Jacob fell asleep. It was something so peaceful about Jacob’s breathing, him only having a shirt and a diaper on, and laying in the shade of the cherry tree. You could hear a few cars in the distance, but otherwise a complete silence. It was too early in the day for the kids to be home from school, so no sound of a bike or a scooter. No dogs barking on the street. The sun was warming Jacob’s legs, and the trees have slowly started to change color into red and yellow. It was peaceful.

And that can probably also describe where we are as a family right now. We are at peace. Jacob is doing really great right now. We feel we have gotten a little bit back of our old little boy as we have removed 2 seizure medications, and reduced a 3rd seizure medication. Jacob is more alert again, he moves his lips all the time to communicate with everyone around him, he is making choices with his eyes, and oh boy – do we love his smiles!

It is always a scary road to start changing Jacob’s seizure medications around, so it is with great satisfaction that we can say that we have now been doing this for a couple of months without no new seizure activity! It is a rare feeling, but a really good one.

We were just about to move Jacob to a new seizure drug, which is not yet FDA approved, and in return remove 3 (!) more drugs from his current laundry list of medications. We just ran into an unforeseen snag. The only pharmacy who can deliver the drug to US has a shortage, and doesn’t take on new patients until their supply is back up again…We were so hoping to do this medication change before respiratory season is here, but we’ll see what happens. We’re still going to conquer seizure medication #4 on Monday, and start going down on that one over the coming 4 weeks.

School is going great. Jacob is in a class of 7 students, which is ideal for Jacob. He gets a lot of attention from his teachers, and loves that his buddies have gotten over their initial shyness, and are now jumping into the wagon with him when they’re on the playground or playing together in the class room. Therapies are also going great, and we feel that it is great to have the teachers and therapists work together with Jacob all the time.

Yesterday, I drove down to Children’s Hospital all by myself. I had to pick up two of Jacob’s prescriptions, and I didn’t have a meeting or doctor’s appointment for Jacob. I was not happy to spend an hour in the car to pick up a prescription, but I sure enjoyed that this is where we are right now. We are not down at Children’s Hospital every week at the moment. Jacob did spend Tuesday night in the sleep lab. His pulmonologist wanted to make sure his bi-pap settings are ok before the winter is here. Jacob didn’t enjoy the sleep study the slightest bit. All the equipment truly bothered him, and we were not surprised to hear from his nurse that his EEG was abnormal. It is a fact that we live with. We still have not heard back on his sleep apnea, and if his bi-pap is giving him enough support today.

We’re starting up an exciting project with Colorado University. One of their engineering classes has an assignment to design and build something for a special need’s child. Jacob now has a team of 5 engineers who is going to build him a bike trailer, so he can start going on bike rides with the rest of us in the spring! We’re very excited to say the least!

Sarah is doing great in school. It is hard to believe that we’re already in October. Friends are important. There is nothing as good as spending time with a good friend. She loves playing the piano, but sometimes not practice as much as just picking up the book and play whatever comes to her mind. Christmas songs are at the top of her list. She sure has some things in common with her mom. She is also for a first time enjoying swim practice, and is also starting up golf in a week. It is great for both Sarah and Joakim to share that interest. Tonight, we spent an evening at a pumpkin patch with her girl scout troop. It was great to see the girls picking out their pumpkins from the fields, and have hot dogs and smores over an open fire.

Joakim is looking forward to have his sister and his nephews here soon. They will come and spend a good week with us in October. Joakim is hoping to take them up to the mountains, and hopefully play some golf with one of his nephews. Shortly after, his cousin with family will come to spend some time with us as well.

I am doing great. I feel “strong as a horse”. It feels like we’re able to take a break from the hard scary times we have had with Jacob for a few months now, and it is nothing that can charge my batteries like that. We have a routine. I love that we can plan, and things actually happen including laundry and work! I actually love that I never stopped working despite the times when it felt completely impossible to have a job when Jacob was really sick. I also continue to stay involved with Miracles for Mito and Children’s Hospital. I have two training sessions lined up with University of Colorado to train their med students, which I will sure enjoy.

As much as I enjoy sharing positive news, I am almost afraid to post this entry. I am afraid that I will jinx it by saying out loud that we’re doing great, all four of us. But I have also learned that every day counts, and we have to enjoy every bit of it.

To fall.

Much love,


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