10:00 pm: Harvey had an uneventful day, relaxing and playing with mom at the hospital. He is currently winding down with a bowl of Fruit Loops and watching ”Mickey’s Twice Upon A Christmas” before bed. Our pantry at home is typically stocked with Cheerios, Kix, and Corn Flakes, but not Fruit Loops (or other sugary cereals). I can only assume…
4:15 pm: Harvey is lively today! Lindsey and I are enjoying every single moment of it. He had a great night of sleep, has been eating well, and has been very active. So far he’s had 2 full walks, spent 30 minutes playing “chef Harvey” in the playroom kitchen, pedaled the tricycle all around the 7th floor, and right this…
10:30 pm: I will never forget March 25, 2021. We lived in Rochester, MN. 8:00 pm. I had just put Hattie to bed, and I was now in Harvey’s bedroom reading him a bedtime story. We heard what sounded like fireworks. I paused reading mid-sentence. Forget the bedtime story! Down the stairs we went and outside to the backyard. We…
8:15 pm: I just introduced Harvey to his web site. We have been sharing every comment, email, phone call, text message, and card that has been sent wishing him well. Thank you all so much! I want to share with you how much he loves it. ❤️ 7:45 pm: Harvey napped for most the afternoon. He’s so worn out. He…
10:15 pm: Harvey had a day of tough side effects including vomiting, tachycardia (high heart rate – 150 bpm while laying in bed), and low glucose levels. While it seems our care team have seen this all before, it’s another thing we worry about right now. He is still tired, but more energetic when he is awake. My fun, loving,…
9:45 pm: Technology can be amazing. (The lack of technology in certain aspects of our lives can also be amazing!) Each of our kids have iPads. They are configured with settings to limit excessive use of entertainment apps, promote learning and exploration (checking the weather, researching places on the globe, taking pictures, etc.), and to use as a sound machine…
9:40 pm: Harvey and I had a quiet Sunday together. We snuck in 4 walks together (they want at least 3 daily). I know. Overachievers, aren’t we? Selfishly, I love our walks that take us into the family waiting area which includes a view of the Minneapolis skyline and, more importantly, coffee! As the Keurig coffee maker starts pumping out…
10:45 pm: There are so many dimensions of difficulty baked into the situation we find ourselves in right now. I’m really seeing the effects that Harvey’s diagnosis is having on our entire family, but I feel guilty saying this isn’t only 100% affecting him. This is his hell, and there’s nothing as parents we can do to help him. This…
1:30 pm: I’m spending the day with Hattie & Henry, so there may be a gap in updates today. I checked in with Lindsey and Harvey a little after noon: He is having a rough day with intermittent vomiting. This morning, he had an x-ray of his stomach to hopefully help determine why it is so distended. We found out…
7:40 pm: Harvey & Hattie were chatting via FaceTime tonight. I was recording them to capture the cute moment they were sharing (although Harvey was slightly moody). I had to abruptly end the recording because I was breaking down behind the camera. Hattie: “I love you, baby. I’m just… It’s ok, buddy. I’m sorry you don’t feel good.” Harvey, after…
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