May 12, 2024

David would like to wish all the the motherly figures in his life a Happy Mother’s Day! He had a fairly good day. Overnight, his Mama Roo arrived to his room, so we gave it a try this morning, and he loved it. He was full of smiles as he happily bounced away. The kids and I arrived this morning to see him – David is always so excited to see his siblings. While Anna and Adam went outside to play at the playground, Eli, David and I had some story time. After story time, Eli tried to have some music time with David where he tried to help him use his shaker. 

After a quick lunch, we were able to take David outside for a walk. He absolutely loves it out there – except for the sun in his eyes! He looked so good, and we wanted to get this in before it got hotter. We did one loop and were just starting a second one, when the sun hit his eyes and David said he was done. So, we turned around and then went back up to do two laps on the unit. David could have done laps all days, but we didn’t want to monopolize his nurse’s time since she coordinated to have help with her other patient. He saw all his friends on his laps and said hello to everyone, and then screamed when we put him back into bed at the end.

Eli and Anna had a bit of trouble settling down this afternoon, and David really needed some rest (they did too, but fought it), so I ended up taking them home. We got to spend some time with the pups then and give them some love and do a bit of cleaning. David otherwise, had a fantastic afternoon. He’s been fairly happy today. David and Daddy got a lot of playtime in today, along with “Daddy OT” down on the floor mat, and some Bluey. We’re just trying to keep him in a good spot for his big day tomorrow. 

This evening though, David keeps throwing up. It seems mostly bile, but it’s hard to say. On his X-Ray yesterday, it did show that his NJ has retracted now to his stomach. So, all his meds and feeds are landing in his stomach and not his intestine. They decided to stop David’s feeds now since it’s been persisting for a couple hours now and he was due to become NPO at midnight anyway. 

We’re praying for David’s big day tomorrow. He has his MRI and then cath. I’ve been nervous about his MRI results for some time, but it will be beneficial for David to get the targeted care he needs. Neuroplasticity is a great thing. As his movement on his left side improves, it seems as though David is overcoming things that it may show – I just don’t want to pigeon hole him. One of his nurses said we probably already have all the information from the earlier CT scan, but this will give us a new baseline to know where he’s at moving forward. We’re also hopeful that the cath will help with his digestive issues and more importantly, learning a bit more about his heart and where it’s at in terms of next steps.