Sunday, April 15, 2012


Life is a little bit too busy right now! There are many good things happening, but very little time to reflect or sit down. Life is in high gear.

Jacob is going on his 4th week with his cast. We're getting better at moving around with the cast, but there are many things in Jacob's daily life that now requires 2 people, e.g. getting in and out of the car, bath time etc. We're hoping the fracture is healing as it should. We're going back to orthopedics in a week for another x-ray, and should know more then. Jacob seems to be doing better at night with his heart rate. We're thinking that he got really uncomfortable in the cast when we had those warm days and nights earlier this month.

Jacob's tummy is giving him problems. He is either constipated or has diarrhea, there is no middle ground. We're scheduled for an abdominal ultrasound on Wednesday to see if we can get some answers to his tummy problems. We're also seeing Dr. E. tomorrow to see if she has anything to add to this new problem. Jacob has never really had any issues with his bowel, so we're up against new territory once again.

Seizures are at bay. We haven't seen any seizures in a long time, and that is great as we're going down on seizure meds every week again. Jacob has continued to stay healthy, so he goes to school every week. Here are some recent photos from what Jacob has been up to at school:

The last one has it's own story. Jacob's dear friend Miss S. brought in her black bear. It didn't take long for the black bear to have a matching red cast with a pink sling - just like Jacob!

We also met with the school district to discuss kindergarten for Jacob. We had met up earlier this spring to discuss possible options. This was probably the smoothest IEP meeting we have had so far! We all went in with the understanding that Jacob will go to both his current school  Bal Swan and his public school Coyote Ridge next year. We will use next year as a transition year to see if Jacob can stay healthy in a public school or not. During 5 months of the year, he will only attend Bal Swan. Dr. E. doesn't want him in public school during respiratory season. The Special Education Teacher and his new Therapists are all really excited to start working with Jacob! I think it is so great that we had this past year at Bal Swan where they could come and watch Jacob and sort of get to know him. I feel we're off to new exciting adventures in the fall! And Jacob once again set the precedence in his school district. He is the first child who has dual placement - both in and out of school district. It might not seem like a big deal, but when the school district has done it once, they will refer to this again, if this is the right solution for another child.

Sarah is in a good spot! It was a bit tough to get out of vacation mode after spring break. She is now in full swing finishing up the school year, playing soccer, swimming on a swim team, and still keeping on with girl scouts and piano. She is a busy girl, but always makes time for her friends as well. She definitely has had a really great year. We're starting to think about summer. Sarah is joining a swim team with a friend, she is going back to golfing again, and the highlight of the summer is going to Sweden with daddy! Second on the list is that her aunt Hanna is visiting with a girl friend.

Joakim is doing well. He keeps busy at work, and at home with the kiddos. He has taken on soccer with Sarah, so drives her to practices and games. Joakim has been a huge help to Gemma and me when it comes to carrying Jacob. Whenever he is home, we'll ask for a helping hand!

I am doing well, but would like life to slow down a bit. I have such a hard time saying no! I am really busy at work. It feels like there hasn't been a break since I came back after the holidays. The same has happened to the volunteer work I do at Children's Hospital. I took on the Parent Chair for the Family Advisory Council after the holidays, and it is like a big snowball that is just getting bigger and bigger by the week! It is one of those projects that you simply can't stop, since it is too much good movement forward! Last week, I was in the board room presenting two days in a row! The hospital is just very excited to see parent involvement at all levels, and I am just very excited to see where this is going.

And then there is Miracles for Mito. Our little core team is busy planning out events to raise money for the year, continuing to build on our relationship with the Children's Hospital's Mito Clinic and MitoAction as well as planning out events for our Mito families. That is another snow ball on the move. We will see where it takes us this year!

And since Jacob is staying healthy this winter, we're also trying to hang out with friends, enjoying some time outside once again as we have had really great weather! Easter, we stayed home. We had a great dinner, ate way too much chocolate, and just enjoyed the outdoors.

That's it for now! I am hoping that Jacob's cast is off, and his tummy is doing better next time I am checking in!

Happy Spring!

Love, Maria.


  1. Lots of good stuff going on Maria! I hope Jacob's arm is healing nicely and you can get an idea of his tummy troubles soon!

  2. Thanks, Deana! I know you all have had your share of tummy problems...