We are home!

We have been home for over one week and it has been crazy busy! I'll recap with pictures...

Ahhh, nothing better than being discharged from the hospital after a way too long (7.5 weeks/52 days) and very beneficial stay!

That Saturday was a beautiful day. As we drove away with the windows down, I looked in the rearview mirror and saw the buildings behind us. I couldn't help but cry at the relief of knowing we didn't have to go back (soon) and we were on our way HOME!

The last few days of rehab were great. Her OTs took her down to Independence Square, which is very cool. Lots of real life stuff for people to practice  on - like booths at restaurants, ATMs, a gas pump, a bathroom, a bedroom, etc.
And a car, which they can make different heights. It was very cool.

She practiced going up and down a full flight of stairs.

And she made jello in the kitchen of Independence Square.

Tom gave her a pair of daisy earrings, for spring. She loves them.

When we got home on Satuday, we saw signs that read, Welcome Home Harlie REES loves you. Each sign was one word and was signed by all the staff and students in each grade. Meaning that Welcome was signed by 3rd grade, Home was signed by 5th grade, etc. So cute!

REES has been amazing. I heard that they put "We Heart Harlie" on the marquee and left it up for weeks while we were gone. They sent me this photo of the staff a few weeks ago. We love having this school's support so much!

While we were in DC, I also got this photo of the staff from Harlie's last elementary school, Glen Allen. They said, "Once a cub, always a cub!" So sweet!

My friends Marcy, Sally, Carol and Stephanie came over to our house in the morning before we got home and decorated it with lots of fun balloons (unicorns, butterfly, rainbow) and flowers, etc.

Mary Ann, Marcy, Stephanie and I went to get pedicures that afternoon, while Tom took the kids to Mike and Stephanie's house to swim in their pool. I have been worried about Harlie getting back in the pool, now that she can't go under the water like she used to. I was thinking it would be too upsetting to her. So, Tom asked her if she wanted to go and she said yes. When we got home she went upstairs, got her swim suit and came back downstairs. So, he took the kids.

On Sunday, I was able to have coffee in my pajamas for the first time in almost eight weeks!! At the RMH you can't have any food or drinks in your room. So, whether I was in the hospital or at the RMH, I had to get dressed and ready for the day before I could go and get my coffee. Plus, I got to have coffee with this girl in my lap, so that was amazing.

I was worried she wouldn't remember me considering we only had 10 days together before we left. But, I can tell she does and she missed me.

Our friend Les showed up on his bike. So Tom and I got dressed and went for a 20 mile bike ride with him. That was fun, even though it rained some. After the bike ride, we went to our local Starbucks to see some of our friends.

Later that afternoon, my mom, Harlie, Caylee (Harlie's nurse) and I went to get manicures. Caylee said that Harlie put the x's over her eyes and asked her to take a picture. Caylee said, no way!

I figured Harlie could use some pampering.

On Monday, Harlie started at Richmond Hope Therapy. They were able to get her on the schedule for physical therapy for one hour, five times a week, speech therapy for one hour, three times a week and occupational therapy for one hour, two times a week. And they were able to cluster her appointments each day. How awesome is that? And when we walked in, look at what everyone was wearing!!

Love the support more than words could ever say!

I went to the store and got Mabel a harness and leash and we took her for her first walk.

LOVE having two Pugs! I'm not so sure that Rooney agrees yet, but I think she'll grow on him in time.

Well, I have way more to tell you about, but I am going to wrap up this post and start on the next one soon.

Thank you from the bottom of my heart for all your amazing support while we were gone and experiencing some scary times. I loved every comment and gesture of love and support.

Thank you to my mom for always listening to me and for being my biggest fan. Thank you to all who visited us, especially Sally, who came almost every single week!

And thank you to Mary Ann, for sacrificing so much of your life to come and stay with the boys and dogs so we could focus on Harlie. We couldn't have survived without you. And I'm so sorry you had to deal with a brand new puppy! That was not my plan!

Much love to all of you! More soon!
Christy xo

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

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

Rehab Day 1, Evaluation Day

Yesterday (Wednesday) marked six weeks since Harlie's surgery. Sigh. Feels like way longer with how crazy and stressful it has been at times.

We finally got authorization from insurance for inpatient rehab on Wednesday. I guess I don't need to say how ridiculous that is. Certainly someone should realize that us sitting in the hospital for six days waiting for an approval is more expensive than sending her to rehab for that same time period. I called my insurance contact to find out what was taking so long and he said they were trying to find out why she had to go to a rehab facility in DC versus Richmond. Um, because Richmond doesn't have one? There's your answer in one second. Let's get this show on the road already.

Given that we had no idea when authorization would come through (and no guarantee it would be approved) it was torture to wait around each day. By Tuesday I reasoned that she would be more active (and happy) at home. Not to mention the longer she sits in a hospital, the more likely she is to get sick. So, I said they had until Wednesday afternoon, or I was going to take her home. Of course, late in the day, after I had made my mind up that going home was a good idea, and after I told Tom to come up, the approval came through. Such is our life.

So, we were transferred yesterday late afternoon, via ambulance.

We arrived too late to get any evaluations done, of course. Which means our first day is all evals. Which means she won't get started until tomorrow (Friday). I think Saturday is a light therapy day, and Sunday is no therapy.

Oh, forgot to mention that trying to get her discharged, and getting all follow up appointments scheduled was difficult. Apparently our insurance (she's straight Medicaid, but through Optima) is now requiring preauthorizations for doctor's appointments. And those preauths take 2-3 business days. And they can't schedule them till they get authorization.

Ahhh, if only my medically complex kid would cooperate and give me 4 days' notice when she gets sick or needs medical attention...

I'm sorry, but that's just not going to work for us. So, I had to call my insurance contact back and explain the problem. He called me back today and asked me to send him a list of the doctors, contact info and about how often she will need to see them (if only I could predict the future...) and they will set up preauths for a year's time.

All of this is because I chose to go out of state/network. And I should add that we have been coming to Children's National since the day she was born. So, we were here first, before she had Optima.

It has been 11+ years since I've had the freedom to make choices when it comes to her and a lot of aspects of my/our life. I just can't stress this enough. We are where she has to be and having more barriers in our way of caring for her feels especially burdensome.

This is a paragraph in her discharge paperwork...

It is crazy to be a mom and read all that stuff about your child. And I knew it all, was right there with her. Still seems hard to believe.

Anyway, it has been a busy day. She had evals with occupational therapy, physical therapy and speech therapy. Plus, there's been a lot of people in and out. I have had to answer so many questions.

So. Many. Questions.

Everyone wants to know what she was like at home, could she walk, could she go up the stairs, was she talking, etc. And I have to ask, do you want what she was like before August, or after? Because those answers are entirely different. So I have to give both.

Tomorrow will be a very busy day.  Here is what her day looks like:

8:30-9:30 OT
9:30-10:00 Educational Eval
10:00-11:00 PT
12:30-1:00 SLP (Speech)
1:00-1:30 TR (recreational therapy)
1:30-2:00 SLP

Whew! But, that's why we're here and the more she does, the sooner she gets to go home.

Before I forget, here are a few pics from the HKU...

Diane

June (wound care). She used to do trach care
And she is the one who trained me and Tom
when Harlie was a wee babe.

Mandy, PT

Melissa, NP in the CICU. She came by to say goodbye.

Moving into to rehab...

Another transition of learning where everything is and how it all works. I am so tired and I just want the comfort of my home. Hopefully just one more week...

Before we left the HKU, we were able to give her a shower and wash her hair with actual water and soap. That was her first proper (not a sponge bath) washing in six weeks. She hated every minute of it, but it was worth it. Just look how good she looked last night.

She did great today with all of her evals. She had to answer a lot of questions, too. The positives from today:

1. She wore her HME during the entire hour of PT and never took it off. She would not wear one before her surgery Feb. 21st. She always said it was hard to breathe. So, I'm taking that as a GREAT sign.

2. She comfortably wore a PMV (speaking valve) for at least four minutes during her speech eval. Her numbers looked great and it was so wonderful to hear her voice. She still reaches to take it off when she talks. But I think that is pure habit. She takes it off to plug her trach with her finger. I think she will get used to wearing the PMV in time. So, I feel really good about that.

3. She went up four stairs with little support today. That is awesome and such an improvement from yesterday.

Okay, I have to get to bed. I feel like this post is kinda choppy and all over the place. But, it took all day to write with many interruptions. And I am so tired and my brain is having a hard time. During OT, I said, "Isn't today Monday?" She said it was Thursday.  Good to know.

Thanks for all the love and support!

Much love,
Christy xo