Amazing Madelyn Grace: She’s already annoyed with us.

Today was a a good day of steps in the right direction, even if those steps made Madelyn want to punch us.

She stayed awake most of the afternoon with moments of rest here and there. One big takeaway of the day was just how annoyed she was with everything. Mom liked to describe her as a sour patch kid; she’s sweet one minute and the next she’s agitated and trying to get out of bed. We can tell that she’s very overwhelmed with everything and it doesn’t help that we’re unable to communicate with her properly.

In other big news, her physical therapists came in today and she sat up on the side of the bed again for a long time and, get this, even stood a couple of times! We’re hoping for more progress and maybe some steps here in the next few days. Until then, we celebrate this win and the nurses and staff who were there to cheer her on with us!

During her skin grafts tomorrow, they plan on giving her a bronchial cleanse like they were doing last week. There was talk about giving her the tracheotomy again or, depending on her lung health, the doctors say they might be able to cap it and have her breath on her own! It all depends on what her doctors say, but they say adding in the trach might just be precautionary in case she needs it. Overall the doctors and respiratory therapists say her lungs are looking better every day.

She spent a lot of time today trying to get the breathing tube out of her mouth and the gauze off of her hands. She’s still very frustrated with all of us, but cooperates with the nurses and therapists, most of the time. I tried to tell her that I was coming in to do her surgery while wearing the fancy cap and paper surgeons gown that we have to wear when we see her and she just rolled her eyes at me. I guess she doesn’t trust me.

The frustration is just a part of the healing process but we would much rather have the frustration and her being awake than anything else.

Every day of progress is a day we’re grateful for!

Matthew 6:21 - For where your treasure is, there your heart will be also.