He just keeps going and going and we are so thankful! He's still getting progressively weaker but we still have no idea how much time we have. He is on a new drug now that makes him a little sleepy and more relaxed. As breathing gets more difficult, the sensation that comes with it is more distressing. This drug is supposed to help that.
Ethan is enjoying communciating with Papa. He runs up to him and places either hand on his legs. (Raising his right leg means yes and raising his left leg means no.) He'll ask, "Papa, do you love me?" or "Papa, want me to sing again?" Dad raises his right leg and Ethan shrieks with excitement, "He said YES!" Maia still wanders up to Papa, softly rubs his hands and says, "Of-oo!" (which of courses means "Love you!" in toddler). She also wanders around the house saying, "Ssh. Papa." She's learned that he needs quiet in order to rest!
Last week they started a new game where she she would show Papa her tummy and he would touch it with his toes causing her to shriek with excitement. He usually became physically tired of the game before she lost interest! Last night he was sleeping on the lazyboy. She lifted up her shirt and said, "Papa?" She then wandered over to his sleeping body and pressed her tummy against his foot and still shrieked with excitement. I guess it's still a fun game if only one person is playing!
Thank you for your prayers! I will keep you posted.
Thanks for your prayers!