Monday, February 16, 2015


Today we have a snowy day in Colorado. It's a perfect stay at home day. Sarah invited three of her friends over for pizza and a movie, and I am hearing lots of giggles! Jacob was supposed to have music and art therapy, but decided to sleep through art and have nurse Shereen and Sarah do all the work! Music therapist cancelled, so it turned into a quieter day with no school due to President's Day.

Despite today's snow, we have had glimpses of spring over the last couple of weeks. We have had temperatures shy of 70 degrees and perfect days to venture out on walks, and to places we like around town. This is the part I so enjoy about Colorado. We always get little breaks from winter, something I didn't know growing up in Sweden.

Our boy has also gotten a break over the last couple of weeks. Jacob is looking good again! His tummy has settled, and we are not dealing with ulcerative colitis or dysmotility. We know this can change any day, but for now we're enjoying it. It makes for a much happier boy, and it's so much easier to be out and about when you don't need to pack diapers and clothes for a couple of blowouts. The worst part of Jacob's GI issues is not the messes it creates, the worst part is the pain that comes with it. I honestly hate when my boy is in pain. Some days, pain medications work. Some days not so great. I can gladly say we haven't even used Tylenol on most days lately. This is a very welcoming break after Jacob's daily struggles with his tummy from the beginning of November thru the end of January.

And when Jacob feels great, we feel great. We can lower our guard a little and enjoy our boy so much more than when the day becomes a long day of medical decisions. It makes me very happy. And here are some of the things Jacob has been up to feeling great:

A day at the zoo with friends:

Farewell party for our friends Andre and Duke:

A stroll through Botanical Gardens:

Next week, we are having a care conference with all his main specialties about Jacob's GI issues. As they spiraled over the last couple of months, we felt we needed to get everyone at the same table to talk about how we can give Jacob the best quality of life despite him having to fight colitis and dysmotility on a daily basis including two PICU hospital stays in the last three months. I am not a big fan of care conferences. It's not the care conference itself, but the fact that we need one. You only schedule a care conference when you know there are difficult decisions ahead. If things are straight-forward and you can work with one doctor only, there is no need for a care conference. In Jacob's case, it's never just a GI issue. His GI issues cause adrenaline insufficiency and seizures. The solutions to improve his GI issues are never straight-forward answers, since all solutions come with side effects. I am not sure what the outcome will be next week, but I do feel better going in to the conference if our boy is doing well.

Wish us luck,


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