Thursday, March 25, 2010


Last year, we were bummed when Dr. E would not agree to have Jacob up in Breckenridge for our annual ski week. He had just gotten out of the hospital with pneumonia, and she was concerned about his breathing on high altitude. We were disappointed, but decided to split up the week so Sarah would still get her spring week up in the mountains. We actually did take the chance to have Jacob stay one night with us, which went really well!

One year later, we don’t even have a conversation with Jacob’s doctor about a mountain vacation. Neither Joakim nor I feel comfortable to bring him two hours further away from Children’s Hospital, and adding stress to his breathing on high altitude.

This year, we’re used to dividing ourselves between the kids – even if Sarah throughout the day is asking for her brother. Definitely missing him, but happy that she can see him on Skype.

It has been good mother daughter time with true spring skiing from a clear blue sky! Time to focus on Sarah, to be impressed on how well she is actually skiing after not having done that together for two years. Having hot cocoa at Ten Mile Station, chatting in the outdoor hot tub. Having dinner with friends who are also up for the week, and best of all eating ice cream way past bedtime!

Yesterday, Joakim joined us for the day as Jacob stayed back in Denver with his nurse. It was good for Sarah to have a whole day with both mommy and daddy all to herself. A snowstorm was rolling in over the mountains, so we hit the outlet stores, had lunch together, and spent time swimming. Coming back to Denver was a scare…It took 4,5 hours to get back, and the only reason I didn’t turn back was Jacob. He didn’t have a night nurse, and sure needed me! As they shut down part of I-70, I wasn’t sure I was going to make it back…

I feel re-energized. A break from giving meds 6 times a day, a break from suctioning, vest and nebulizer treatments four times a day, a break from g-tube feeds every 3 hours – and the list goes on. I always hesitate to complain about Jacob’s care, since I don’t want pity. But at home my brain is always going, each hour of the day knowing what meds or treatments that is due next, always getting out of bed as I hear an alarm during the night to make sure Jacob is ok. We did have a good day at home today though, snuggled up inside as the spring storm didn’t allow a lot of outdoor activity for us.

Tomorrow morning, I am hitting I-70 again. I will spend the day skiing with Joakim and Sarah. Sarah won a raffle at our time share, so she will take Joakim on a snowmobile trip on Saturday. She is excited, a first for her!

It’s a little bit more planning, and back-and-forth in our vacation than probably for most people, but we’re sure enjoying our week. It’s easy to stop planning vacations when we never know if we can go or not, but this week taught me that we do need to do that more, not less. Sarah and I also have this tiny, tiny hope that Jacob could come with us to Breckenridge this summer. Hope is good, right?

Jacob is doing pretty well right now. He has adjusted to the BiPap, and he has less secretions!!! We have started a medication that dries up his secretions quite a bit. Jacob is vocalizing and smiling a bit more again, so that's great!

Enjoy the last (hopefully) snow of the season! – Maria.

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