Tuesday, May 22, 2018

Three months Post-Op

Yesterday marked three months since Harlie's unplanned laryngotracheal reconstruction (LTR). And what a difficult three months it has been. Honestly, it feels like it has been longer than that. I guess it is hard to differentiate when life hasn't been the same since August.

But, despite how horrible some of the past 3/9 months have been, I am so happy to finally tell you how good she's doing. She is better right now than she's been since August 8, 2017. That dreadful day changed everything. But, I'm trying to be positive here... And since she is better, I am much better. I haven't been myself in so long. I can't tell you how hard it has been to be so fearful of losing her all the time. Since her scope on May 11th, I have been able to breathe and relax a little.

Anyway, she is back in physical and speech therapy and goes about four days a week. She likes it and seems to have fun despite working hard while there. It amazes me how she doesn't push us back sometimes. No matter what she achieves, we just ask for more. And she keeps on giving and keeps on trying. Crazy.

Last night we all went to walk the dogs. We are dog sitting my sister's chocolate lab, Rosie this week. And the third dog makes it really hard for me to walk all three by myself. So, I made the whole family go with me. I went to get Harlie's wheelchair out of the car, but Harlie went to her bike and said she wanted to ride it.

She got this bike back in December. I don't think I was ever able to blog about that day. Her physical therapist at the time, Tracy Morse (been with us since Harlie was just a few months old) nominated Harlie to receive a bike from Help Charities. They had a thing with Santa there, and presented the bikes to the kids. It was so great.




Harlie and Tracy

Well, needless to say, she hasn't been able to ride it. But, they started working with a bike like this in physical therapy so she's gotten some practice lately.

There wasn't time to make adjustments to her bike before the walk, so ignore that she isn't fitted properly. Tom did that when we got back. Anyway, she motored on down the road, with NO oxygen AND she was wearing her speaking valve! And just like she did walking to school last year, she started singing the song from Trolls, Get Back Up Again. I don't know how she does it. But we are so grateful she does!





And her teacher comes today for the first time since mid-February! I can't imagine missing so much school. That must be so weird for her. I know she will be happy to get back to it. Last night when we walked by the school she asked when she can go back to school. Hopefully she will be able to attend in the fall. We'll have to see how this summer goes.

Well, that's all I have time for today. It feels so great to post a good update for a change!

Thank you so much for all your unwavering support! All of your comments, texts, emails, calls, contributions to Harlie's care, and general acts of kindness are appreciated more than I can say!

Much love,
Christy xo


Friday, May 11, 2018

Bronch Results

We had to leave the house this morning at 5:30, for our appointment in DC. I got up at 4:00 and started to get ready. Tom woke up shortly after to help me. He is so good. While I was busy getting myself and Harlie up and ready (had to give her two different breathing treatments) and packed, he took the dogs out, made me coffee and a breakfast sandwich to go, and he went and started my car. And that's when he noticed that I had NO GAS!

He came upstairs and said something about getting gas. I told him I didn't need to because I just filled up Wednesday night and I haven't really gone anywhere since. He said no way, you're past empty. I almost started to argue with him, because I fully believed that I got gas on Wednesday night. 

Wednesday was my Mom's birthday and we all went out to dinner to celebrate. Wednesday was a really busy day with lots of running around. Sometime during the day, my gas light came on. I had NO idea when. Did I mention that it was a crazy day? So, I was going to stop on my way to dinner. But, then I just didn't have time. So I said I would push it till I was on my way home. In my mind, that's what I did. But I didn't because I ended up staying later than I intended and was late getting home. So, I forgot to stop!

On Thursday I never left my house. So, I didn't give it another thought. 

So, it was 5:30am and I had NO gas. Tom took the gas for the lawn mower from the shed and put it all in my car to buy me time to get down the road and find a gas station that was open (the ones by our house were not open). 

That's how my morning started. I have run out of gas twice. And it would be four times if it weren't for Tom. Not that long ago I asked him to go put gas in my car. He ran out of gas on the way to the station less than a mile away. He's such a good husband. ☺

Anyway, back to Harlie, she was a champ, as always. Dr. Pillai (pulmonologist) came out to talk to me first. He said he did not find any casts! He said her lungs actually looked really good. I am so relieved! I can't believe it, but it looks like she got the best case scenario!

He was thinking this probably means she does not have Plastic Bronchitis and she could stop the Heparin breathing treatments. And we probably don't have to go to Children's Hospital of Philadelphia for the lymphatic mapping. Hallelujah!

Dr. Preciado came out then and told me that he cut something out of her airway (not remembering his words right now, maybe scar tissue). Her stoma is still really friable, and she bleeds so easily.  But the reconstruction looks good. The loss of her voice must have been due to inflammation from the virus a few weeks ago.

We started the Heparin breathing treatments on Monday and by Monday night, her voice was already stronger. After four days of treatments, she was able to tolerate the speaking valve again. And this morning in pre-op, she was so talkative and clear! Maybe the Heparin helped, maybe it was coincidence. I don't think it makes sense that it would have helped. But I've learned that in medicine, not all questions get answered.

He said he wants to do another scope in six weeks. And Dr. Pillai said he could take a quick peek in her lungs again and see if anything changed.

So, I should be able to relax a little now. Which will be a really nice change.

They admitted her to the CICU for the night and will send us home in the morning.

After she got settled in and some time had passed, Dr. Pillai came by. He said he let her docs in Richmond know about the bronch. They had a difference in opinion on what to do from here.  They want her to continue the Heparin treatments and they think we should still go to CHOP for the lymphatic mapping.

So, I need to talk to the people at CHOP to find out more about what this mapping means and what she has to go through for testing. Then we need to make a decision on what we want to do.

For now, I'm happy because I am WAY less fearful. I'll start to think about going to CHOP next week. 

Unfortunately, I think I am coming down with something. I have gone downhill since this morning and feel so horrible now. I was hoping it was allergies, so I took some medicine earlier. But I am feeling worse by the minute. It has made writing this post so much more difficult. I'm falling asleep as I type this!

Before I go, today is Murphy's 14th birthday. It feels weird to not see him on his birthday. The other night I told him I was really sorry that Harlie and I wouldn't be home for his birthday. He said it looked like I didn't have a choice, so he understood.

Since we couldn't celebrate today, we had his birthday dinner last night. I got him an ice cream pie from Gelati Celeste for his cake. It was amazing!


So, Happy Birthday Murphy! We love you so much!

Thank you for all the support, kind comments and thoughts and prayers!

Much love,
Christy xoxo

Thursday, May 10, 2018

Our Ever Changing Life

I'm so sorry I haven't posted in so long. I wish I could say it is because we have been out having fun, living life to the fullest. Unfortunately, that isn't the case. A lot has happened over the past few weeks.

While coming/being home has been fantastic, reacclimating to our normal life has not been easy. I feel like I am trying to merge onto the busiest highway, in the crappiest car. Life doesn't care that you're beyond tired, or that your brain doesn't work as well as it used to. It doesn't care that you went through something traumatic. The boys still have cross country practice, swim practice and homework. The house still needs to be cleaned, laundry still needs to be done, pets still need tending to and I still have work to do at my part-time job. Life doesn't stop so you can catch up.

Here's what I started to write a couple of weeks ago:

Thursday, April 26

I don't even want to write this post. But, I suppose it does give you an idea of what this roller coaster of living a special needs life is like. One day you feel over the moon, the next, you're freaking terrified.

Things were really good for four days. Four whole days.


Therapy was going well and she was able to go three days, Monday, Tuesday and Wednesday. Then Wednesday night she had a fever. And she has had a fever every single day since. On Friday (April 20th), we took her to her doctor. She tested negative for the flu and strep. But, she put her on antibiotics to try and prevent a secondary infection.  She has missed six days of therapy now. It just kills me how everything is so difficult for her.

For the most part, she seems okay now. She spent several days in bed in her room. But, the past few days she's gotten up and come downstairs. Tonight, we took her with us for a walk with the dogs. The worst is that she has no voice. And she keeps asking what's wrong with her voice. It has now been eight days since her first fever and still no improvement in her voice. I guess I have to give her more time. But, I am so scared something went wrong. 

There's also been a new issue with her that I haven't been able to blog about. 

Back on February 8th, I started Harlie's breathing treatment and went into the kitchen. Keep in mind that at that time, we were unable to safely change her trach and were trying to keep her from plugging. Soon after the treatment started, she started coughing an awful sounding cough. It was a sound I had never heard before. It was so strange and alarming that I ran over to her. I could see something in her trach, like debris of some kind. I tried to suction it, but it was obvious that wasn't going to work. So, I grabbed it with my hand and pulled it out. 

It had a dark tip that was hard, like plastic but the rest was white, and rubbery and didn't break, like mucous would. It kind of looked like a worm. It was so odd, that I put it on a napkin and took a picture of it. I put it next to a business card for size comparison. 

Then, when we went to DC for her surgery on February 21st, I showed her ENT the picture. He said it looked like a cast and that I should talk to her cardiologist. 

So I did. She told me it is from Plastic Bronchitis, which can develop in patients with Fontan physiology and high cardiopulmonary pressures (Harlie has both). She also told me that the leading research for that disease is being done by Children's Hospital of Philadelphia (CHOP), and that we might have to go there. At that time, Harlie had bigger fish to fry (in the CICU) and we couldn't do anything about it anyway. I had to focus on other issues.

Fast forward to last week, our first week home. On Tuesday (the day before her first fever) she started coughing, making a weird sound. It sounded just like it did when she coughed up that cast in February. I tried to stay calm, but those casts can occlude her airway (which is terrifying). So, we worked really hard with saline in her trach and saline breathing treatments. The sound seemed to come and go. And in my scared mind, it was as if the cast was stuck below her trach. By Tuesday late afternoon, we decided to change her trach. There was a plug in the trach we removed and at first, I was relieved that maybe that was the problem. However, just a few minutes later, she started making that sound again when coughing. Ugh!

So, I emailed her cardiologist the next morning (Wednesday). At this point, none of her specialists here in town know anything about what happened in DC, or about the cast in February. Within 25 minutes, she called me. She explained some risks with Plastic Bronchitis (PB) and told me Harlie needs to see her pulmonologist asap. I told her I'm afraid that I'm being paranoid. She said I need to be hypervigilant.

Since then, I've been working on seeing him. We spoke via email the other day and he told me a little more about PB. He also included the Chair of Pediatrics, who is also a pulmonologist and is an expert in PB. He said this in an email to me:

The Children's Hospital of Philadelphia/Children's Hospital of Richmond plastic bronchitis consortium follows the largest number of PB patients in the world and the International registry for PB is located here at ChOr@VCU. I discussed management with Dr Schmidt this morning and have attached a brief chapter we recently published in the European Respiratory Society handbook. Happy to work with Dr Schmidt to keep Harlie well.

Our appointment is this morning at 10am. I read the paper he sent. And then I read some more about Plastic Bronchitis.

Here is a link:

http://www.chop.edu/conditions-diseases/plastic-bronchitis

Here is a picture of what a cast can look like.

I asked him if this was removed or coughed up. He said, believe it or not, adults can cough up something like this. This is what Harlie's looked like:

And this is the picture I took on February 8th.


So, are there more casts in there? Is this the cause of her exercised induced intolerance?

So, just to recap, Harlie now has heart defects, including a pacemaker, congenital lung disease, with only 3.5 lung lobes instead of 5, major airway problems and now Plastic Bronchitis (which is called a devastating disease in papers).

WHAT THE HELL?!

Any ONE of those things can be life threatening.

I just want my daughter to breathe easy and feel good way more than she feels bad. Is that too much to ask? Screw sports or other extracurricular activities, popularity, trendy, advanced classes, college, or anything else that most parents consider success in children these days. I want her to live and be happy. And honestly, that goes for my boys, too.

I have to pause. We have to go to our appointment. I'll let you know how it goes.

Friday, April 27

Yesterday we met with her pulmonologist, Dr. Schmidt and the Plastic Bronchitis expert, Dr. Rubin. Basically, he said if someone coughs up a cast, they almost always have PB. So, we have to assume she does. After reading the paper, and a bunch of stuff on the internet, I want to know if she has anymore casts in there, waiting to come up.  And I want to know, like now.

He said he was going to send a report to CHOP and ask for them to see her asap. I guess the first step is some kind of testing. The negative is that, according to what I read on CHOP's website, they use some special MRI. But, Harlie has a pacemaker, and cannot have an MRI. So, we'll have to see what they do in situations like this.

They want us to start one of the few treatments they think might help slow the production of these casts, inhaled Heparin (Heparin in a nebulizer). Dr. Schmidt gave me a really nice, heavy duty nebulizer. We have to give these breathing treatments every 4 hours for 48 hours, then we can go to 3 to 4 times a day. To put this possible diagnosis in perspective, Dr. Schmidt said he has never prescribed inhaled Heparin before.

Harlie's constant ability to take the path less traveled is exhausting. It makes me so fearful, because pretty much anything is possible. There is no comfort in the words rare, almost never or unlikely.

That night, I went in to say goodnight to Harlie. I could tell she needed to be suctioned, so tried to suction her. The catheter couldn't get through. Her trach was completely occluded. She grabbed the catheter out of my hand and tried to suction herself (as if I was doing it wrong). She got the same result, and looked at me like, "WTH?"

So, I called Tom and said we had to do a trach change. I had a very hard time getting the trach to go in. So much so, that I said to Tom, "I can't get it in." I could tell she was getting uncomfortable, so I finally just had to force it in. She bled and cried. It was terrible. And so unsettling. Tom hung out with her and they looked at photos on his phone until she was better.

I emailed her ENT and let him know what was going on.  It felt like all the positive from her surgery in February was gone.  It was crushing.  He said he wanted to see her the following Thursday.

~~~~~~~

Unfortunately, I don't have the time to give this post the attention it needs.  So, I'll be really concise to try and catch you up from here.

It is now May 10, and I've written this post over the past couple of weeks.  It has been hard to write because I've not been in a good place.  I have been so fearful of losing her, and that is very difficult to live with every day, month after month.  It wears on you.  And it has made me pretty angry.  I found myself thinking that what is being asked of her and us, is just too much (inhuman, really).  I mean, we are only regular people.  How much are we supposed to handle? I'm screaming uncle and no one is listening.  Anyway, it hasn't been pretty.

But, we went and saw Dr. Preciado last Thursday and it was a good appointment that made me feel a lot better.  So, I am better.  Plus, Harlie is better.  She is back to her cheerful, happy, more energetic self and so I am so much better. I am still fearful, but way less than I was.  I will fill in the gaps tomorrow while I'm in the hospital.  We are headed back to DC tomorrow for a scope of her airway and her lungs (to see if she has anymore casts in there).  Which means that I might get some answers very soon!!!  And I am very glad about that!

So, keep your fingers crossed that her lungs aren't a mess.

Thank you, as always, for your support!

Much love,
Christy xo

Wednesday, April 25, 2018

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

Thursday, April 12, 2018

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

Sunday, April 8, 2018

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