Day 33, Busy Monday

Today was a busy day. After attempting some (almost) 5 week old homework, Amber had a small speech therapy with a fill-in for Sara named Kiersten during breakfast.

Then Dr. Catie came in and removed the remaining stitches and staples.

We had PT down on Floor 5, and were able to see Amber swing. When she was sitting there she had her feet on the floor and was swinging the swing on her own, even her left leg and foot were helping a little! Then we got on the floor in a high kneel and pushed and pulled a big ball back and forth 5 times!

After that we had a nice visit with Grammy and Grammy back at her room. They brought up the Relic of the True Cross from Saint Patrick’s Cathedral where we said a couple beautiful prayers with Amber before her lunch. During the prayers, while Amber was in the wheelchair, I noticed she was struggling with her right hand to get her left arm and hand on to the top of her tray. I went over and helped place her left arm and hand there for her. I was thinking she was uncomfortable with it being on her lap, but no, that’s not what it was. As soon as I did that for her, she promptly takes her right hand and feeds those fingers through the non-responsive left fingers so that she could properly pray (out loud) those prayers with folded hands. That — that was tough. I choked out the last of the prayers and went to the opposite corner of the room to cry and try to put myself back together. Remember my post from a couple days ago about her. . . innocence and sweetness, yeah, same exact feeling going through me again. These moments are tremendously pure, but utterly heart wrenching.

After going outside to blow bubbles and eat some diced peaches, Grammy and Grampy said their goodbyes and Amber and I went back to her room where she took a much needed nap.

After said nap which lasted about a half hour, Caitlin from OT was ready for her. Down to Floor 6 we went to the little gym. Caitlin had Amber on the mat sitting playing a Grilling Game. At a couple points, Amber was sitting unsupported! She was able to do that all by herself while keeping her neck strong! Then she pushed and pulled a big ball a few times in a high kneel.

Her “button” (G-Tube) is still really bothering her which I feel like is delaying her with forward moving therapies. I think she’d be willing and wanting to do so much more if it wasn’t for the pain and soreness of the G-Tube.

All in all though, a good day for Amber, whose so unbelievably strong & tough!