Owen's Story

Another good day here at the Evans house.  Played all.day.long.  Yesterday when we were at the hospital we caught up on the beads of courage.  I fill out the chart each week, but we usually don’t take it in all of the time, so when we do, we get a ton.

He had fun filling up his 2nd full string, and even had some extras that wouldn’t fit, so we will have to get another string next week.  Can you believe that each of those beads represents something he has had to go through?  He likes asking which each color means, I tell him and remind him how brave he is and what a strong little boy he is. How fitting that he has a super hero shirt on today.

Happy Monday!  Everyone was doing good this morning, so I packed the boys up and we headed out for some errands.  I had some stuff to drop off at their school, so that was our first stop.  Owen put his mask on and we headed in so that he could say hi to his friends and teachers.  He was so happy to see everyone.  A little overwhelmed, but so excited.  We didn’t stay too long, but it was so nice for him to be there.

We have been all over the place with his sleep schedule ever since he was diagnosed.  In the hospital it was so hard to try to keep him on a schedule, and now that we are home, we just can’t seem to get him back in to it.  If he takes a nap in the afternoon, he doesn’t seem to be able to fall asleep until 3 or so, then he won’t go to bed at night.  But, if he skips his nap, by dinner time, he is beat.  It wouldn’t be so bad if we could just put him to bed at 7 and be done, but the one medicine he is on has to be taken 2 hours after he eats.  So, today we tried to skip the nap, and he could barely finish dinner, then he fell asleep with his head on the kitchen table!  I guess maybe we will start having to eat earlier… Can’t anything be easy?

Here is some “artwork” he did today… I thought the “yea, I did this” look was pretty funny.

Saturday was Jeff’s birthday, so we had fun celebrating.  Jeff’s parents came over and brought our niece so Owen was so excited!!  He got to play, and play, and play…. Jeff and I got to go out for a little while, and Owen was still up when we came home.  He made up for it today… he slept in till around 10:30 and took a nap before dinner.  Too much playing yesterday.

It was such a warm day here in Pittsburgh, so Jeff took the boys for a walk in the neighborhood.  They all really enjoyed getting out of the house for a while.  He has been walking a lot better, but still sat with Logan in the stroller for the walk as we have a ton of hills where we live, and wouldn’t have made it too far.  We are really enjoying these days where he has some energy and is feeling good.  I was talking to the doctor this past week and he said this will probably last only a few more weeks until he gets into a more intense part of his treatment.

“When you arise in the morning think of what a privilege it is to be alive, to think, to enjoy, to love …”
― Marcus Aurelius