April 4, 2024

For the most part, not a terribly exciting day, which means it’s a pretty good day. The best part is that David’s smile has started to return! He has such a great smile – but he’s very selective as to who he shows it to, and whether a camera is present or not. 

David spent some of his morning sitting up in his chair, and promptly fell asleep. When he woke up, it was time for a combined music therapy / OT session. He worked on gripping some maracas and hitting a tambourine while sitting up and stretching his arms. We’ll have to work with him more on opening up his hands and getting him to grip or reach towards things that are not his tubes on his face. Everyone is so excited for him when they see him on his floor mat because it means it is time for some fun. 

After the therapy sessions were over, David had some routine ultrasounds to check on the clots in his veins and arteries in his arms and legs. From how I read the results, his left leg and left arm clots are opening up and are no longer blocking blood flow. His right leg artery though is blocked, and has been blocked since birth so will likely never reopen, but he has flow from some collaterals that formed. They will just not be able to use that artery for future cath procedures. 

During the ultrasound, David was able to “play” some bingo. We all enjoyed watching Fern during the game because she was wearing some crazy head pieces. David took a bit of a nap after Bingo and his ultrasound, and then later he got some cuddle time with mommy. Since I left my phone in the back of the room, he showed me lots of smiles. 

Eli and Anna stopped by his room again for a quick hello. They wanted to find all the toys to give him to play with. After dinner they played outside to burn off some energy. 

As for respiratory support, David stayed off SCUBA for the whole day. He’ll be back on SCUBA overnight and in the morning he’ll get a chest x-ray to see how his lungs look. The team also decided to accelerate his feeds just slightly, and now they will increase by 1 ml every 6 hours. Once David is able to need less respiratory support, there are other things they would like to do with him, but in the meantime, his respiratory support and his feeds are the two things they are working on the most.