Rehab Days 2-4

Rehab Day 2 - Friday

Friday was a busy day. She had a total of four hours of therapy. She wasn't shy anyway, but man, she is getting a ton of practice talking. She had her teacher eval. She was really nice. And when she told Harlie she was a teacher, Harlie said, "I love school!" Then the teacher said that she would be working with her next week, and Harlie said, "I'm excited!"

It is "funny" how so many things make me so happy, so proud and so sad at the same time. This was one of those times. Here is a kid who loves school, despite the fact that it is very challenging for her. She has had to learn while hurting and recovering from painful surgeries and complications. Yet, she still loves it? Isn't that crazy? And she hasn't been to school one day of her 4th grade year. I am thankful for the homebound program and her homebound teacher for maintaining her love of school even though she can't go.

A different speech therapist (SLP) came to talk with her. I am so excited to tell you that she wore her speaking valve for at least an hour! With no problems! She told the SLP all about her dogs, their names and ages, her brothers, their names and ages. She asked for my phone so she could show her pictures. It was amazing! Honestly, I think she could tolerate a cap. But I don't have one with me. I asked her if she wanted to smell something and I told her to plug her trach with her finger and breathe in through her nose, and she did! So, that is promising!

Her PT did a series of balance tests on Harlie. She did pretty well, overall. She couldn't stand on one foot for even one second, but I know she will get there soon. She tested as a moderate fall risk, which was a better score than I expected.

Of course she had OT and TR, which is recreational therapy. They played games and she got out of the room for a bit.

A wound care nurse came by to look at Harlie's trach wound. It is getting better, but still has quite a bit of healing to go. Her wound care can be confusing. Every time a wound care person looks at it, they change our wound care regimen and the products we use. Each person has their own opinion, and of course, the wound is changing, so the way you care for it changes, too. It makes learning what to do feel impossible. At this point, I just do what I'm told.

Harlie received some gifts from my friend Susan. I've mentioned her before. Her daughter is Ainsley, and she was trached (she's decannulated now). She sent these great Troll gifts to remind Harlie to be the brave warrior princess she has been.

And it plays her theme song!

She also got some Legos from Cooper and a cute bag with some pens in it from my friend Robin, and her daughter, Faith. Robin sent me some gifts, too. Faith is 11, (her birthday is the day after Harlie's) and has Goldenhar Syndrome. She is trached, as well. I met Robin through Facebook years ago. They live in Colorado, but Robin is from northern Virginia. She was here for Spring Break a few weeks ago, and stopped by to visit me and Harlie at the hospital. We have wanted to get the girls to meet each other. I think it would be amazing. Too bad Harlie was in no condition for that a few weeks ago. Thanks for the gifts Robin and Faith!

Tom came up Friday afternoon. We hung out for a while and then he took me to do dinner.  Thursday night was rough since I had to get up so many times to suction her. So, Tom slept in the room with Harlie so I could go back to the RMH and sleep.

Rehab Day 3 - Saturday

She had a light day, only 30 minutes of PT and 30 minutes of OT. But, Tom played with her a lot and got her moving. His version of ladder golf was pretty funny.

He had her get on this thing and he rocked it like a horse. She had to use all her muscles to stay on.

She was laughing so hard. She said, "I can't get the smile off my face! Seriously!"

She cracks me up. She was exhausted after that.

We played some video games in the playroom.

By the end of the day, she was independently walking, refusing our help, and pushing our hands away. It is not her normal walk yet, but it is progress!

Tom slept in her room again, and I went back to the RMH.

Rehab Day 4 - Sunday

We took Harlie outside to the garden today.

There's no therapy on Sundays, so it has been a quiet day. The PT gave me a sheet with some exercises that we can get her to do. Tom got her to do them this morning. We got her another Lego set today (an RV/camping set) so she's been working on that for a few hours. Our spring family camping weekend is this coming weekend. We will have to miss it - again (her and I couldn't go on the fall trip, either). But hopefully, we will be home soon.

So, that's it for today. I'm anxious to see what a full day/week looks like.

Thanks for your continued support and encouragement!

Much love,
Christy xo