June 8, 2024

Today was a fairly uneventful day for David. He napped a lot, and then I tried to squeeze in little bits of activities during the times he was awake. We played with some bananas in the high chair, followed by playing with some toys and reading Little Blue Truck. Afterwards, David returned to his bed and took a nap. Later we read some more of the Harry Potter book. We also played with the giraffe popper toy and worked on sitting. David’s slowly getting better at that skill.

Another thing we did was play with his shakers. I can’t believe how much he shakes them around. Just a few weeks ago, they were quite heavy for him and he would drop them almost immediately – especially with his left hand. Today he was vigorously shaking them around with both hands! One of the nurses who knows him well stopped by for a quick visit to say hi, and he showed off his shaking skills. She mentioned that last week she had a patient who had a stroke, and she told their family a little bit of David’s story. About how she’s had a patient who has had 3 strokes, and has been regaining movement when he didn’t have any. I hope that it encouraged that family, because it’s heartbreaking in the moment watching your child lose skills they once had. Who knows what his long term movements will be, but he always amazes me with what he can do. 

Later this afternoon, I put his gym in his bed with him. I thought it would be fairly easy to place him into it, but I clearly forget he has lines attached to him from all directions, and he would need to be disconnected to get him in there the way I thought it would work. Or maybe I need to set up the gym after he’s on the mat portion of it. It didn’t matter, because he loved just hanging out in the gym even though his lines were all a little messed up – he got excited and started moving all limbs like crazy when he was set into it. I love seeing him interact with his surroundings, and enjoying it. He reached for toys hanging from it, and pulled them around. This evening he was awake for the nightly novel and read some more Harry Potter. 

Otherwise, the plan for today was no changes. He’ll go to full protein (amino acids) tomorrow, and that will be the only change. Slow is what David demands. He’s still fairly gaggy – but he doesn’t spit up with it. When he coughs, he has trouble moving those secretions and I think it gets stuck in the back of his throat and bugs him. He turns red and drops his heart rate, but sitting up helps him recover since gravity helps to move those secretions. David’s still on high flow at 40%. Yesterday, he had a negative fluid balance, which we hoped would help his respiratory function. It’s rather tricky figuring out how to wean his support, but he gets whatever support he needs. 

Adam took Eli and Anna to the Get It Dunn run in Menomonie, WI this morning. Adam’s cousin has been organizing the run for several years, so the kids were able to see lots of extended family as well. Eli and Anna ran the kids run and Adam ran the 5k. I think they ate lots of snacks there as well before napping in the car ride home. They finally joined us at the hospital around dinner time. Both of those kids were either hungry, could have used more sleep, or both, so they didn’t hang out for too long. Long enough to paint some pictures and color the glass on David’s door and eat a quick dinner, before I escorted them out of there and went home. They were much better at home, so maybe it was just a long day for them.