Post-Op Day 18

Tom got here late last night. Harlie was so happy to see him this morning. He brought some gifts that some friends had dropped off at the house.

The mermaid pillow and the green tube thing in a pic below is from Amy Carlton (her speech therapist) and the wonderful people at Tree House Pediatric Therapy.

The Poppy troll doll is from Eva Cauble and her sweet family. I loved her card. For those of you that don't know, Harlie sung the song from the Trolls movie, "Get Back Up Again" almost every day on her way to school. So, Eva's card said that they think of her every time they hear that song. And she wrote, "You will get back up again, Sweet Harlie!"

The hospital let us borrow an iPad mini for a communication device, since she can't talk right now. She immediately made it say, "I want to eat strawberry." This was after talking about how great her mouth is opening. She definitely wants to learn to eat food, or at least taste food.

She brushed her teeth this morning and it is so great that she can open her mouth again!

Ms. Johnson is Harlie's summer tutor. She has really helped with her reading! She made Harlie this banner for her hospital room.

I can't believe that we are just a few days away from the three week mark, and I am hanging up a banner in her room with her name on it. Really hoping this next week brings much progress!

Harlie and Tom played for a bit and Harlie was more like herself than I've seen in the last 18 days. It was so good to "see" her again! But, it didn't last long. That burst of energy tuckered her out. She was so tired for the rest of the day.

They did get her up in the chair for a while. And she stood and walked a few steps to get there. So, that's good.

Tom and I went to lunch and to walk around for a while. We were hoping they were going to do her abdomen wound and trach care while we were gone, but we caught the tail end of it. They gave her Ketamine, but she started to cry in the middle of it, so they had to give her more. Ugh.

I took a look at her trach site and it does not look like it is going to heal quickly. It really looks like it has a ways to go. While they were doing all that, she started to cry again, and we could hear her. It made me so sad.  It will be better when she gets off this ventilator.

Well, that's it for today. Overall, it was a good day. It was nice to see her smile a lot and more of her personality.

Thank you for all your love and prayers!

Much love,
Christy xoxo