Rehab Days 5 - 8

Rehab Day 5 - Monday

I don't remember much about Monday. She had a full day of therapy (8:30 - 2:30). And did it all while smiling..

Her OT had her stand on this plate and she had to lean left or right to make the basket catch the apples.

She also sat on it and had to lean left, right, forward and backward to play the game. All good core stuff.

And lots of stretching. Her hamstrings are so tight that her knees stay bent all the time.

The atrium was pretty sunny, so she asked for my sunglasses.

Rehab Day 6 - Tuesday

She started a group speech therapy session called Convo Club. She wore her speaking valve and sat at the table with some other kids here. It was SO awesome to see her in a more social situation. The SLP had each of them say their name and say hi to each other. They discussed what month it was (I'm sure that was confusing to Harlie given that it was February last she knew). I forgot to tell you that her OT asked her what season it was. Harlie answered winter. Her OT said it was spring, and I told her, in her defense, it was winter when she got here.

Anyway, they also talked about their favorite holidays. I was surprised when Harlie answered Halloween. And I just keep thinking about how freaking cute she sounded when she said it. I am LOVING hearing her voice again!

But seriously, I'm so surprised. She doesn't even get to eat the candy. She gets very tired with having to walk up the walkways and stairs to the doors. She must really like the dressing up part.

She used a cool touch screen to motivate her to stand up and reach high and to the left and right.

And she did an obstacle course.

I have found a new routine. After she is done with therapy for the day, I walk back to the RMH, shower and pack clean clothes for the next day. Then I walk back. This day I stopped at a restaurant on my way back to eat and have a beer. The cafeteria at the rehab center closes at 2pm!

Rehab Day 7 - Wednesday

Yesterday was another good day. She's such a happy kid!

In PT she went up four stairs, three times. So, that's awesome. And she got to exercise on a machine, which she clearly loved.

She had Convo Club. It was really funny. They had show and share. That was cute. The SLP started with the normal hi's and the date. I was so surprised that Harlie volunteered that it was April. She must've remembered from yesterday. I love hearing her volunteer information and answer questions.

The boy in the group kept pretending that he had fallen asleep. So, the girls would yell for him to wake up. Harlie started this thing where she would count down 3, 2, 1 and they would yell. I know it sounds so silly, but it was so wonderful to see her having fun with kids. This may come as a shock, but as amazing and funny as Harlie is, she doesn't have many friends. So, it is a rare occasion to see her in that setting. So, I just soaked it up. She looked like she was really enjoying it and it was so great to watch her.

She had a follow up appointment with her ENT, Dr. Preciado. So, they sent a van to take us over there. When they told Arlene (her nurse) that they were downstairs, I realized I didn't pack up anything. I'm so out of practice! So we quickly grabbed the oxygen tank, go bag, suction bag, my bag and her tablet, put her in the loaner wheelchair and headed downstairs. On the first floor, I realized I forgot her speaking valve. Ugh! So her nurse ran up to get it while we were loading her in the van.

Then, we got out of the van at Children's and I after I walked her down the hallway, I realized I left my phone in the transport van. Great. I am just all out of whack. I am soooo ready to be home and feel like myself again. Everything about our life is different here. I'm ready for our crazy normal again.

Anyway , the appointment went well. He measured the pressure while she wore the speaking valve. The pressure was low, which is great, so we know she can wear it safely. Yay!! He changed her trach so he could make sure it is easy to change, and it was. So, all is good there. Whew! Also, her wound is healing so well now. So, that's awesome. He has high hopes as far as her airway goes. So, I do, too!! Oh, what a good feeling! It has been eight months since I've felt hopeful about her airway.

After her appointment, I took her upstairs to the CICU to see if any of our nurses were working. The girl at the front desk said the unit was really busy, so I didn't want to bother them. But, she called Erin for me and she came out to see us. Love her!!

Then we headed back. Oh, and while we were getting back in the van, we saw her PT, Mandy. So, that was great. I forgot to mention that she came by to visit Harlie on Friday. Isn't that so sweet? We have had so many good people help us. It has been amazing.

Once we got back, I was done. I don't know about Harlie, but this rehab is wearing me out!

But, we are scheduled for discharge on SATURDAY!!! Woohoo!! I am more excited than I can put into words. For real.

Arlene said goodbye. She isn't working again till Sunday, so it was our last day together. She is a wonderful nurse and she worked really hard to get Harlie what she needed. Harlie often creates new rules wherever we go. She is not your standard anything. Arlene rose to the challenge.

Rehab Day 8 - Thursday

Only two more full days of therapy to go and then we get to go home!!!

She has another busy day scheduled. Each night they bring me her schedule for the next day.

Her day starts with a swallow study. A few times, she has coughed after drinking water. Considering she had major airway surgery, they just want to make sure she can swallow safely. So, hopefully that goes well.

Okay, I have to get up and get ready so I can get some coffee before her swallow study.

10am

She did well for the swallow study. With water, she had "penetration" meaning it started to go the wrong way, but then fixed itself. She feels it, which is why she coughs. So, no aspiration. They think she will get stronger over time. She swallowed some yogurt and there was no penetration, so that's great. The water is thinner and moves faster. Once it corrects, she's fine. So, that's all good.

She had a session with the teacher (unfortunately she had been out sick this week and today was her first day back). That went well. I think she really liked being in that setting again.

I'll go on ahead and wrap this post up now. Thank you for all the love and support. I can't believe we are almost HOME!

Much love,
Christy xo