The lower moments…. Blood draw attempt through the IV that only led to an actually poke. That was a rough hour and 15 minutes. A few times of his drain not draining which leads to a quick fall of all happiness and into pain. He is still staying in the mid temp range which also brings him down quickly, but especially when pain pills are slightly delayed. 

And the positives…. we had a solid walk outside with him actually playing make believe and being very talkative. He was trying to run at times and being interactive with others around him. We saw some super Sal style silliness.  He ate!! He had pizza, chips, carrots, gummies, and tons of fluid. He had a bath and even put on his Elsa costume for a quick performance. And, full bathroom success. This is hugely important.  

We are seeing upward movement and we happily celebrate this. 

Although as I write this the nurses now want to take off his bandages over his drain on his head, just as he is falling asleep. Yay… I’m going to deal with this. Wish us luck as we cut this bandage out.  🤦‍♀️ 

I wish I knew how to say thank you in a way that feels as meaningful as what you give to our family. Truly, thank you. 

😘