Back to Boston...

I know it has been another really long time since my last post.  Writing about Harlie is harder than it used to be.  Writing about her and our life with her was, for many years, very therapeutic. I found early on in her life that if I was going to share the negative, I had to find some positive to tell you about.  I had to show everyone that we were still hopeful, happy and grateful.  So, even during some really rough times, when I sat down to write, I found something positive to share.  And looking back, that wasn't really that hard - because I really was so hopeful that easier times were to come.

But, then August of 2017 happened.  Boston happened.  And that emergency trach took all of my hope away.  All of it.  It made finding the positive feel almost impossible.  So, over time, writing became to feel more of a burden.  Especially once we got home from her two month, scary, horrible hospitalization in DC (February - April 2018).  I often have to fight to keep myself from feeling angry.  We just lost so much by going to back to the trach life.  And the trach life has been so much harder this time around.  Insult to injury.  Salt in a wound.  So much more pain all around this time.  As Harlie's mom, I am expected to handle stuff that makes other people cringe and look away.  But, I can't do that.  I have to face it - and do so with a smile.

I have to hide my true feelings most of the time.  I have to hide my anger, my grief, my fears, my utter disappointment and defeat (which I am feeling all of the time) from most of my friends, my family and most of all - from Harlie. No one wants to see that.  No one wants to hear it.  Most people don't want to even think about it.  And, when it comes to Harlie, she needs me to be positive, upbeat, happy, grateful and funny.  That's what I want to teach her more than anything - to be funny.  😊

So, burying my feelings most of the time takes a lot of energy.  And I've been lacking in the energy department for quite some time now.  Most nights my sleep is interrupted by Harlie's equipment -equipment we didn't have to have when she wasn't trached.  More salt in the wound.

Anyway, in our never ending quest to give Harlie a better life, we had no choice but to revisit the craniofacial team in Boston.  This was done with some reservations:

1. I didn't want to go back. I didn't want to feel what I knew I would feel returning to Boston Children's Hospital.  Hello, PTSD!

2. Traveling with Harlie takes energy.  I don't have a ton of energy right now.

3. I was afraid they would say there was nothing they could do to help her.  Or that they wouldn't even try given the amount of close calls and challenges during all of her post ops.

But, what are we supposed to do - give up?  I don't want her to live the rest of her life this way!  And I've made a point in not letting fear make my decisions for me.  Plus, we did all we could to help her airway, and now there's nowhere else to go - but Boston.  So, I wrote her surgeon and told her what has happened, and what I was thinking.

Our appointment was Friday, July 12.

Thursday night was difficult.  My stomach was in knots.  While my mind knew it was just an appointment, my body was feeling the stress anyway.  So weird how that happens.  We don't have as much control of our feelings as people think we do.

We flew up to Boston Friday morning.  Got there and took an Uber to our hotel.  It was only about 10am, so we couldn't check in.  But, they held our bags for us so we didn't have to lug them around all day.  Then we walked to one of our favorite restaurants, Sweet Cheeks, for a quick lunch.  Then we walked to the hospital for our first appointment - her CT scan.

She held still for three minutes and all went well.

I want to go back for a minute to tell another story.  Back in August of 2017, the night of her emergency trach, I met with the anesthesiologist.  She was really nice, very good at communicating with me and told me about what happened in the OR that night.  But, it was so late.  It was well after midnight, and we were all so tired.  It was such a hard night all around.

Weeks later, while Harlie was still in the hospital there, that anesthesiologist came back to visit us.  I can count on one hand how many times an anesthesiologist has come back to visit after surgery.  She really wanted me to know how hard they tried to not trach her.  She wanted me to know they didn't make that decision lightly.  They had no choice - she would have died if they hadn't.  She spent some time with us that afternoon and it was great.  Here are some pics we took that day.

She gave me her card and asked me to send her those photos.  She told me that she would never forget Harlie or that night, and I believed her.

But, when we got home in September of 2017, life was so hard.  And I had nothing positive to say to Dr. Vinson.  I kept waiting for things to get better so I could tell her things were better and that we were okay.  I wrote her a card and wanted to mail it - but never did.  This is a perfect example of how the simple things can be too hard for a special needs mom.

So, finally, a week before our appointment, I emailed Dr. Vinson. I told her I was sorry for taking so long to share those pics.  I said I would love to see her when we were at the hospital if she was around.  But, if not, I wanted to drop something off for her.  She wrote back and said she wanted to see us, too.  She remembered, just like she said she would.  She gave me her cell number and asked me to text her when we arrived.

I packed that card I wrote and a We Heart Harlie & Friends hoodie.  But, as things often go, we freaking left it in our suitcase - at the hotel!  Ugh!  Simple things being hard.  I realized it at lunch.  So, I asked Tom to go back to the hotel and get it while I took Harlie to the hospital and her appointment.

And then Dr. Vinson found us in the CT Scan room.  So, I told her Tom was getting her gift and would be there soon.  She got called away and said she would find us later.

Then we went to dentistry to get images done there.  I sent Tom a text to tell him where we were.  Boston Children's hospital can be very confusing.  There are lots of separate buildings (we had three appointments in three separate parts of the hospital) to get to dentistry, you have to take one set of elevators to a floor, walk through that level, to go to an older part of the hospital, then take another elevator to dentistry.  I told him I was soooo tired and could he please stop and bring me an ice coffee.  He found us and I was grateful for the coffee.

Harlie was so cooperative for the dental images!  I know she was uncomfortable and her mouth/gums started to bleed during it - but she still did everything asked of her - with no complaint.

Then we headed over to craniofacial. After getting there, I realized I LEFT MY COFFEE IN DENTISTRY, which as I mentioned, was way too far away to go back and get.  The struggle is real, people.

I forgot to mention that on Thursday I got a call from a nurse practitioner from the craniofacial department.  She had some questions about Harlie.  She told me she was creating a PowerPoint presentation for the team so they would be prepared for us when we got there.  So crazy - my kid needs a freaking PowerPoint presentation!

Anyway, we went into the same conference room we have been in every time.  The team was waiting and Harlie's images were on the big screens on the wall.

Cutting to the chase, they confirmed what I have believed the whole time.  The jaw fusion release (ankylosis release) on August 8, 2017, set her jaw back, into her airway, causing an upper airway obstruction.  I remember meeting with one of the surgeons immediately after her surgery.  He said he had to remove a centimeter of bone.  I was shocked, a centimeter is a lot when we worked so hard a few years ago for MILLIMETERS.  So, I asked, "Is that going to negatively affect her airway?"  No, he said.

But, doctors are people, too.  They are not right all the time.  And each patient is different.  Especially Harlie.  But, I knew.  And I need to remember that. I need to have confidence in my gut and what I know, even without a medical degree.  No one knows Harlie better than I do. 

While there are several options out there, in her case, there is only one real, viable option - mandibular distraction.  That is what she had in July of 2013.

Here are some images from her CT scan.  Air is black and there should be black going all the way from her nose and mouth, down her throat and into her lungs, with no interruption.  As you can see, she does not have an open airway.  This is her profile.  Also, notice her cervical spine defects.

The surgeon said that it is likely that the back of her tongue base is touching the back of her throat at times.  Ugh. Can you imagine how annoying that must feel for her? No wonder she coughs all the time! My poor girl!

Mandibular distraction is when they break the bone, put pins and rods on both sides of the break and everyday we turn the screws and it re-breaks the bone - spreading the break apart, allowing new bone to grow in the middle.  This will (hopefully) make her jaw longer, so her tongue base can have room in her mouth and get out of her airway.

However, it isn't quite that simple.  After the last distraction (which was successful) her jaw bone kept growing - but towards her ear (which is not good) and it kept growing until it touched the base of her skull.  That is how it fused closed.  And that is why she had to have the release in August 2017.

So, she basically has no jaw joint.  Which means that when we go to distract her jaw bone again, it would spread apart in both directions.  We only want it to grow in one direction - towards her chin, not towards her skull (this would certainly cause the fusion again).

So, they are going to install some hardware to give the jaw stability - so it only grows in one direction.  They pulled up another patient's CT scan so we could see an example of the hardware they will use on Harlie.  Here it is:

The rods that go in above her ears will be exterior and are there for stability.  Nice, right?

We will turn screws for roughly three weeks and she will have to wear the hardware for two to three months, I think.  Those time tables could certainly change, depending on her bone cooperation and growth, of course.

After they went over everything they asked us how we felt about doing it.  Here is my thinking:

1.  The risks we have to consider when Harlie has surgery are the same - no matter what surgery she is having.  The risks are not greater with this surgery.

2.  She does not have a good airway.  If her trach were to come out and we couldn't get another one in, she would not be able to breathe.  This is a hard fact to live with, and quite frankly, I find this riskier to live with than any surgery.

3.  The scar tissue around her trach is horrible.  It flares up (bubbles up like a blister) and bursts on a regular basis.  This skin can only handle so much trauma.  And it is painful for Harlie.  There is no resolution in sight.  Other than getting that trach out and letting that skin heal for good.

4.  Her quality of life.  She knows what she's missing.  She sees what other kids can do and what she can't.  I took her to the pool a while ago and I had to hold her on my hip and walk around like she was a baby - she will be 13 next month.  It was raft day at the pool, and she had to watch all the other kids play freely on rafts.  Sometimes I don't know how she deals with her sadness.

While hearing all this was initially really difficult, I quickly made the transition to relief.  I was so grateful to hear that they think they can help her.  I was really afraid that we were out of options.

After we told the team we want to proceed, Dr. Padwa said, "Okay, team, what do we need to do to entertain operating on this kiddo again?"  Haha!  So, they started to brainstorm who needs to be on board - ENT, cardiology, etc.  She said she wants Harlie to come up one month before the surgery to see all her specialists so they are all comfortable with a plan.  Then we will go for the surgery, come home for the turning and recovery.  Then go back up again to have the hardware removed.  That's a lot of travel.

Oh, and while we were still in the conference room, I received a text from Dr. Vinson.  She said she had to leave the hospital soon but wanted to see us first.  So, I texted back that she could just come to us then.  It was so funny because right about then we started joking with her docs.  Dr. Padwa was talking about that night (August 10, 2017) and was telling the team how she was in bed when she got the call from the hospital that Harlie was really struggling to breathe and needed to be reintubated in the OR.  She told them she threw on her scrubs and rushed in.  She said she was freaking out wondering why it was taking so long to get her down to the OR.  I do remember her yelling, "WHAT IS TAKING SO LONG?!"  It was absolutely awful to watch Harlie struggling to breathe.  It makes my stomach hurt when I remember sitting by her bed that day.  We all made her struggle for too long, hoping and praying she would turn the corner.

Anyway, Dr. Padwa said something like, "I was freaking out and here was mom, being calm, making jokes and asking ME if I was okay!"  I had to tell them that is just the way I cope.  I really don't like serious situations, so I try to make it better by joking and if you don't know me, you might find me inappropriate.  I am pretty calm in those situations (sad that I can say "situations" and that I know how I behave in them).  I want the team to be able to focus solely on Harlie and not have to worry about me.  I probably also don't want to show how freaking scared I am.  Because trust me when I say those situations are super fucking scary.

Back to the story, Dr. Padwa said, "I remember the anesthesiologist that night."  And then there was a knock at the door and it was Dr. Vinson.  Haha!  Dr. Padwa was so surprised!  She said, "Amy, I was JUST talking about you!"

So, Dr. Vinson joined us and we finished up our consultation.  So, we are waiting on a surgery date now.  My guess is we will have to wait until spring 2020.  We'll see.

Okay, I'm going to wrap this one up.  This was long and took forever to write.  I guess it is appropriate that this one gets done close to the two year anniversary of that stuff.  I have a lot more feelings about all that - might share them in another post.  We'll see.  At any rate, this week is a tough one for Tom and I, with lots of big, high and low memories.  Thanks for thinking of us and cutting us some slack. 

Much love,
Christy xo

Mother's Day 2019

Murphy's 15th birthday was yesterday.  Today is Mother's Day.  I remember everything about having him.  He was such an incredible joy.  Everything about him was relatively easy, even though he came into this world five weeks early, when we were completely unprepared.  We had just started our bathroom renovation and we had no working toilet, sink or shower when I had him.  But, it was fine.  We figured it out and we enjoyed almost everything about him.  The night terrors weren't fun, but really he was such an easy baby and kid.  Still is, really.  Well, except for that pesky traumatic brain injury...

Then, two and a half years later, we had Harlie.  I remember Mother's Day when we were expecting her.  It was 13 years ago and we knew something was wrong with her lungs.  That is when we started to fear, grieve and hope.  Everything changed about Motherhood for me.

As a mother, I have had to do things, experience things, no mother should.  I've had to learn things, understand how normal things work, then learn how Harlie works.  I had to become an expert in Harlie's congenital heart disease, lung disease, Goldenhar Syndrome, spinal issues, feeding issues, airway management, equipment at the hospital, equipment at home, monitors and when to listen and when to ignore all the beeps.  ALL THE #@$*!$ BEEPS.  And, I've had to learn, and accept that her life is dependent on me knowing when things are going bad, when she needs more help than I can give, when to take her to the hospital or when I can keep her home.

I've spent countless days and nights by her hospital bed, in the intensive care unit.  I have watched her struggle to BREATHE.  I know my way around four different children's hospitals.  Her nurses have become my friends.  They were the constants during long hospital stays.  I've watched a nurse hit the code button beside her bed, heard the alarms and the footsteps of all the people running to her aid.  And I have had to miss the boys, their life and being their mother while I was with Harlie.  I have had to miss my husband and being a wife to him.  I have had to miss taking care of my family while I was taking care of Harlie.

I have slept beside a baby monitor for 15 years now.  Having a trach greatly limits her volume, especially at night.  And her equipment running makes it hard to hear her alarms, requiring the use of a baby monitor.  More nights than not, our sleep is interrupted by Harlie's needs.  This sleep deprivation usually ends relatively quickly for most moms.  For me, it has lasted for 15 consistent years - and counting.

Every day it takes energy to bury all the trauma, horrible memories and losses deep down, so all the good can float to the surface.

Today is Mother's Day and I am choosing to think about how incredibly good and awesome my life is.  It really is extraordinary if you think about it.

I have an incredible mother, who taught me how to be the mother I am.  Our life wasn't easy growing up, but we had a good life, full of good times and good memories.  I am a better mother than I am a daughter and I hope my Mom believes  knows that is a testament to her.  :-)

I have an incredible husband who has never backed away from a scary moment or hard time.  He has stood beside me, often having to hold me up.  He has supported our family in every way and has put my needs above his, more times than I can count.  He has held the fort down and has made our lives fun and exciting despite our many limitations.  I can't possibly put into words how great I think this man is and how lucky I am to call him ours.

I have three incredible children.  They have learned how to deal with this unstable life.  They have had to learn to be happy with less.  Less stuff, less activities, less money, less vacations, less freedom, less mom-time. Often, Harlie and I have left the house - not having any idea when we would return.  Sometimes, Tom and I have been so afraid we would not be able to bring her home.  These three kiddos are resourceful, grateful and roll with the punches like nobody else.

I am grateful for the things most moms have the freedom to take for granted.  I am proud of the things that most moms don't even have to think about.  And I am proud of myself.  Every day I carry baggage full of worries, fears, grief, memories, skills, tasks, etc., that no one else can see.

But, I am so grateful for this life.  I certainly wish it were easier and better for Harlie.  But, I know we have done the best we can for her - despite all the obstacles.  We still have her. We can still hold her.  We can still comfort her.  We are still laughing with her.

Thank you Murphy, Harlie and Cooper for giving me this extraordinary Motherhood.  Each of you brings your own uniqueness and endless love to this incredible life of mine and I am so grateful for each of you.  I will love and give all I can for the rest of my life.

All my love,
Christy xo

Murphy Update

I started this post on March 30.  Sorry for the delay in finishing it! 

Hi All!  I've gotten lots of messages asking about how Murphy is doing and we appreciate that so much!

He had his follow up MRI and appointment with Dr. Jane, Jr. last Monday, the 25th.  It went fine.  Here are some pics of the MRI...

This next photo is proof that I am not always late.  The imaging place gives you this if you are early (which we have been each time) or on time for your appointment.

Although, I still got punished because I had to eat at iHop.  Haha!  But, Murphy was excited and he ate a lot of calories, so it was worth it.

Anyway, back to the MRIs, the epidural hematoma has not decreased in size yet, but Dr. Jane said that it is starting to liquefy, so I think that is progress.  He wants us to see the Traumatic Brain Injury team to get more guidance on him returning to school.  I really have no idea what we are doing with that.  I did sign him up for home bound services, which they (our county) agreed to.  Harlie's home bound teacher picked him up, so she will return in the afternoons to work with him.  That is good because it is one less stranger to add to this house!  Plus, Murphy already knows her, she is good and I like her.

I think she said he gets 8 hours per week.  She will go to his school and pick up work from his teachers, then return it when completed.  Our third quarter just ended, so I have no idea how his grades are going to work out.  I have only spoken with one of his teachers (theater arts, about his role in the musical at the end of April).  We have spring break this week, so I guess I will start reaching out to them after that.  At this point, he has not been ready to work on anything. He's tried to make some things like brownies, cake, etc. from a box, and he said he cannot read the numbers (like the temperature or the times to bake, etc.).  He says the numbers look jumbled.  It has only been two weeks today since his injury, so I'm not really surprised.

April 14

Sorry, got distracted and didn't get back to blog.  This was a harder week than usual because I had to drive to Charlottesville for Murphy and DC for Harlie this week.  Anyway, Murphy had another MRI and follow up appointment with his neurosurgeon on Monday, April 8th.  For the first time Dr. Jane said the epidural hematoma is starting to decrease in size, so that's great!  We were really happy to hear that.

See how thrilled he is?

Overall, he is doing well.  He is pretty tired and easily irritated most of the time.  I'm sure we would have seen a bit of that personality change anyway, as he is just weeks away from turning 15.  But, I also think his memory took a hit.  I have to write lists if there is any hope of him remembering to do anything.  I have to put "eat breakfast, eat a snack, eat lunch" as items on his to do list. And he still forgets. A loss of appetite is a known issue with TBIs.  He lost a few pounds the first 2 weeks, but has regained it now.  We are making him do chores (he has plenty of time to still help out at home).  He is pretty bored and probably somewhat frustrated, although he doesn't really complain. He would much rather be able to go to school and ride his bike and go to the school musical rehearsals (more about that in a bit).  He doesn't have the desire to do much now.  We went on a little road trip for Spring Break and he did not want to go.  We made him, of course.  I think he was glad once we were there.  But, after each day he was totally wiped out.

Home bound school has been a bit of a struggle so far.  His teacher goes to his school to collect his work, but not all his teachers have put work in his folder yet.  He has been out of school for four weeks so far (one of those weeks was spring break). I will admit I feel overwhelmed with the task of figuring this all out.  It isn't as simple as you would think.  I really have no idea when he will be ready to return to school.  But, I can say that it isn't now.  I guess we'll know when it is time.

Sadly, I spoke with his Theatre Arts teacher and based on what he would have to be able to handle for rehearsals (and he would have to be off of home bound in order to participate anyway) he cannot fill his role for the school musical.  We are so sad for him.  He really wanted a part and he took his auditions seriously.  I know this is such a huge disappointment for him.  And for us, as parents, as we were really looking forward to him having this experience and seeing him on stage.  He took the news well and said he figured as much.  But, I think the Holton kids are really good at dealing with disappointment.  This family has certainly had more than our fair share of practice!

We go back to Charlottesville on Wednesday for an appointment with a TBI doctor.  His neurosurgeon said he knows surgery, but not long term recovery, so he wants us to meet with them.  We'll see how that goes.  His next MRI and appointment with Dr. Jane will be in three weeks.

Well, that's about it for him for now.  Thank you again for asking about him!

Thanks for the love!
Christy xo

Murphy and his accident

For Christmas, we bought Murphy a ticket to the Mumford and Sons concert at John Paul Jones in Charlottesville, VA (an hour away from home).  The concert was Saturday, March 16th.

We decided to make a weekend out of it.  So, we rented a cabin in Charlottesville and brought the whole family, including our friends Mike, Marcy and their son Kaden, and Harlie's nurse Caylee and her boyfriend.

We drove up Friday night and got pizza and hung out at the cabin for the night.  On Saturday, all the boys went on an 8-mile hike (Ragged Mountain) and us girls had a nice, quiet, lazy morning.  Then we all met up for lunch at Three Notched Brewery.  The plan was for us all to spend most of the afternoon at the cabin, then Mike, Marcy, Tom, me and Murphy would go to the concert that night.  And Caylee and Blake were going to take Cooper, Kaden and Harlie to the movies.  But, as we all know, sometimes things don't go as planned.

After we had eaten, we went outside to the back of the brewery, where there was a band and a large, grassy area for the kids to run around.  The little kids were chasing Murphy around and he was being great with them, letting them catch him and tackle him and just being silly with them. A little boy that was there joined in the fun and they were having a great time. Here are some of the pictures I took just a few minutes before Murphy fell.

Murphy being silly with Harlie's sunglasses.

The area in the background behind him is where he fell. 

He was letting the little kids tackle him, hang on him, knock him off the tricycle, etc.

I just happened to look in the direction of the boys running when I saw Murphy fall.  From where I was, I thought he slipped on loose gravel, because his feet came out from under him (like it would if you slipped on ice) and he landed on his back and his head hit the ground and bounced back up.  It made a very loud thud sound and everyone that was outside turned to look in that direction.  We ran to him to see if he was okay and we didn't realize there was a rope there until we had to duck under it to get to him.  When we saw his neck, it was then that we realized he hadn't seen the rope either, and had clothes-lined himself, which is how he got knocked off his feet.

We had him lean up against that metal bin in the left of that photo and get himself together.  He was very confused and upset.  It was clear he couldn't (or shouldn't) hurry to get back on his feet.  So, Tom went and brought the car to him.  Caylee started asking him questions and Murphy couldn't tell her what day it was or where he was or what he had for lunch just a little while ago.  He said his vision was very blurry and it was really upsetting to him.  We had two car loads of adults/kids, so we filled our car with people and went back to the cabin.

I went to get our insurance cards from my bag (which had been at the cabin) and Tom and I put Murphy back in the car and took him to the emergency department at UVA.  They evaluated him pretty quickly.  The first thing they saw was his neck.

They said they don't usually see that kind of damage from an accident - it is usually the result of intentional harm (hanging or strangulation).  Yikes.  So, they ordered a CT scan of the neck just to make sure everything was okay there.  The doc said that since he's already going to be there, they might as well do his head, too, just to cover all bases.  Based on Murphy's physical exam, he appeared to be "okay".  There wasn't anything alarming to tell them there was something more serious going on.  In fact, we told them we had tickets to see Mumford and Sons that night and we joked that they had to hurry up and "fix" him so we could go.  They joked right back and said they were going to get him there. My expectations nowadays are pretty fluid - so I knew we were not going to be able to take him to this concert.  While certainly disappointing, his well being is clearly far more important in the grand scheme of things. 

However, after about an hour or so, he started vomiting.  They called over to CT and asked them if they could see him sooner.  They got an IV started and gave him some Zofran and Tylenol via IV since he was vomiting so much.

When he got back from the CT scan, I wasn't really THAT concerned.  I was thinking he just had a concussion.  But then both the resident and the attending doctors came in, and we could tell it was more than that just by the looks on their faces.  The attending doctor said something like, "there is an area on the left side of his brain that is very concerning."  And she went on to say bleeding and they already called the neurosurgical team and that we would begin to see a lot of activity.

Ugh.  I'm not going to lie, it was really hard to hold myself together.  And I speak for Tom, too, because I know he felt the same way.  It was very scary - even for this seasoned set of parents who have been scared in the hospital many times before.

A neurosurgeon came in and gave him a more extensive exam and he seemed to do well on that.  There was nothing obvious that I could see that was weird or that looked like he "failed" at anything.  So, he said they would repeat the scan in four hours to see if it was still bleeding.  But, they had to come in and do a neuro check once every hour.

Those four hours between scans were very hard.  We were looking at him so closely, looking for the earliest sign that something wasn't right so they would have the time they needed to figure things out.  I know I do this a lot already with Harlie.  Which probably made this experience even more tiring.  It is exhausting to worry about the life of your child - not their enjoyment of life as most parents do.  I'm talking about their ACTUAL life.

After a while, they got him a room in the PICU.  He really seemed to be fine.  So, at 9pm, Tom left to go get dinner for us.  While he was gone Murphy had a rough spell and started vomiting again (this was with several anti-nausea meds on board already) and he really complained about his head hurting (like wincing and putting his hands on his head).  This looked like the most pain he had up to that point.  Ugh, this was not a good sign!  10pm couldn't get here fast enough!

After he got the scan, it seemed to take a long time for them to come tell us the results.  Every minute that ticked by felt like an eternity.  I started to think that was a good sign.  At least they weren't running in here with consent forms, whisking him off to surgery.

Then a few of the PICU docs came in with a rolling computer.  They showed us the two scans side by side and showed us that it had gotten bigger.

The 6pm scan is on the left, the 10pm scan is on the right.

I shouldn't have asked - but I asked them what their guess was as to what the neuro team would do.  They said their guess was that he would need to have surgery to pull the blood off. Geez.

The neurosurgeon came at midnight to give us the official results.  What is up with making us wait so long for these results?! He did another exam and thought Murphy did well.  So, he said they wanted to get one more scan to see if it was still bleeding. UGH!  He said they would rather not do surgery unless they absolutely had to.  So, they ordered another scan for 2am. He's such an agreeable, non-complaining kid at baseline that it made depending on him to know something was amiss, pretty frightening.  This really felt like torture.  The nurse could tell I wasn't thrilled with more waiting.  So, she reassured me that she would be watching him like a hawk and she would alert them at the first sign that something was wrong.  When she went to do the next neuro check she asked him if he knew where he was and he said, "at someone's house."  ACK!  But, she said he was still really sleepy, so she made him wake up more and then asked him again and he corrected himself.  Whew!

We kept thinking that I would send Tom back to the cabin to get some stuff - like more comfy clothes, or our toothbrushes, but we never felt like he could leave.  So, we both settled in on the couch and chair and tried to get some sleep.  I think he got back from the scan after 2:30am.  I watched the clock and we must have drifted to sleep because the neurosurgeon woke us up at 4:30am.  Ugh - I am SO glad we fell asleep because I would have been furious to wait so long for results!

This scan showed that it got only slightly bigger.  So, that meant it was slowing down, at least.  Again, his physical exam was good - so they wanted to wait it out a little longer.

I think they got another CT scan at 6am and they also did a fast MRI.  At this point, they wanted to switch to MRIs to lessen his radiation exposure.  At some point that morning, a different neurosurgeon was on duty and he and the attending neurosurgeon, Dr. Jane came to see us.  We loved Dr. Jane, so that was great.  He sat down and took his time explaining everything to us. Murphy's diagnosis is a traumatic brain injury (TBI), Epidural Hematoma with a non-displaced skull fracture.  He said that there are some positives to surgery (craniotomy).  It is very reliable, it speeds up recovery by getting the blood off the brain faster (otherwise the body just has to re-absorb it, which takes time) and some parents find it reduces their fear.  Amen! Sounds great! So, when are you scrubbing in, Doc?  

I had to tell him that our daughter has had two craniotomies, so this surgery doesn't scare us.  But, he said, despite all those positives, he would really rather avoid it if at all possible.  He said that the blood is gelatinous in there, so he can't just drill a hole and pull it out.  He has to remove all the bone over it, and that it would be a large area.  And he would have to shave his hair.  Again, where's the negative in this scenario?  He said, "Well, since I'm hair challenged, I respect his hair."  Haha!  But, clearly a craniotomy does have risks, so they try to avoid it, if possible.

The best part is that Dr. Jane told Murphy that he is going to be fine and will fully recover in time.  It is so weird (and absolutely positively amazing) to have an isolated incident, that you feel confident will be fully resolved.  I never leave the hospital like that with Harlie.  It is always "until next time." My fears with her NEVER go away. 

Since then, all of his MRIs are unchanged.  It hasn't decreased in size, but they said that could take weeks to months.  

Tom brushing Murphy's teeth.

Caylee and Blake brought the kids up to visit before taking them back to Richmond.  Cooper was very upset and really needed to see Murphy before he left.  Poor Cooper is always afraid for his siblings. Ugh.  

And what a small world!  The PICU team did rounds and the NP was Lauren!  Lauren was Harlie's nurse on the day Harlie coded and arrested last year (March 3, 2018).  Isn't that crazy?  

Harlie and Lauren in March 2018.

Lauren and Harlie on March 17, 2019.

Later on that day, with surgery not likely, they cleared him to eat clear foods - like this popsicle.

Then Monday morning, cereal.

The Ronald McDonald House is booked, so I got a hotel room at their medical rate, right around the corner.  Tom went back to Richmond early Monday morning.  And I've tried to just do what I do when I'm in the hospital.  It is so good to get out of the hospital and have that short walk to and from the hotel each day.

It is funny how I forgot for a second how different the hospital is on a weekend vs. a weekday.  Haha!  Monday was such a busy day!  The brain injury team came by and spent some time with us.  Occupational therapy came by and she gave Murphy a bunch of tests, some verbal/memory ones and some balance ones.  He did well.  And physical therapy came by and she had him walk for the first time since his fall.  He did well with that, too.

I noticed that he has a brain injury, really, for the first time that day.  He asked me several times during the day what the pulse ox thing was on his finger and why does he need to wear it.  He asked me several times what the numbers on the monitor mean.  So, that was a little weird.  Expected - but still felt a little weird.  Especially, since he's been doing so well.

Nutrition came by and wanted him to place his orders for lunch, dinner and breakfast on Tuesday.  I could tell immediately that he was overwhelmed.  He tried to read the menu, but he looked like it hurt.  So, I tried to help him by giving him less options.  I only read things that I knew he would be more likely to eat.  But, right then the PICU team rounded on him, so I had to leave.  I told the nutrition person to help him by slowing down a bit, and I went to attend rounds.

It is kinda hard to tell when he's being "off" or he's just being a goofy 14-year old boy.  For example, when the PT came, she asked him if there are stairs to get into his house.  He said yes, and said, "There are three stairs to go in the back door, five stairs to get in through the garage and about seven to go in the front door."  Impressive!  Then he said, "Or, best case scenario, I can take a ladder to my window."

What?!

So, she said, no ladders, buddy!  But, was that his brain injury - or his regular goofy self?  Really  hard to tell.  Haha!

At some point they switched him over to neuro checks every two hours instead of every one hour.  He's really tired, because they are constantly waking him up and making him answer a bunch of questions.

Monday night they moved him to the Intermediate Unit.  Between the busy day and the move to another unit, he did not feel good at all that night.  His new room is a shared room, but there isn't anyone with him right now.  I don't know how they expect anyone to get better while being squished into a very small room with another person.  I crossed my fingers that he wouldn't get a roommate before we were out of there. 

His nurse this morning (Tuesday) said he was her most agreeable patient.  And that is exactly the way he's been this whole time.  He's been funny and he makes everyone who comes to see him laugh.  He asks questions and is polite and respectful.  I know he was so scared listening to a lot of these conversations with his doctors.  He is so good and I am so proud of how he has handled himself during this ordeal!

Anyway, his last MRI was this morning (Tuesday) at 4am.  It remains stable and unchanged.  So, Dr. Jane (neurosurgeon) came by and said he is comfortable discharging him today! Woohoo!

The brain injury team and the neurosurgical NP came by again this morning and gave me some specifics on what he can/cannot do.  No riding his bike, diving or jumping into a pool or doing anything that increases his risk of falling or hitting his head for the next three months.  Hitting his head would be the worst thing he could do.  So, no PE at school for the rest of this school year for him.  He can only have less than two hours of screen time per day, and very little reading.

Clearly, he is going to miss a lot of school.  His returning to school work (at home) and then school will be done as he can tolerate.  His neurosurgeon said if he tried to learn something right now, not only would it be difficult, he would have very little memory of it.  And they recommend the return to school should be done gradually.

He will have his next MRI in Charlottesville on Monday and will see Dr. Jane afterwards.  I want him to see Dr. Jane for now, since he is familiar with Murphy and has examined him several times.  Once we get to more spaced out follow up appointments, I will look at transferring his care to Richmond.  The neurosurgical NP said they know the team at VCU and have a good relationship with the neurosurgeon there, so it sounds like that transition could be a smooth one.  One can only hope...

So, once we knew they were letting us take him home I headed over to my hotel to check out.  While there Murphy sent me this text:

So much said in so little words.  Haha!

Then we were off! 

Waiting for Dad to get the car.

While we were waiting for Tom to get the car from the parking garage, I thought, "I wonder if he remembered to get the parking ticket validated."  Then, he called me and said he was stuck in the line to get out of the garage - but I had the ticket!  They were busy and when Tom told them that I was going to run over with the ticket, they said, no - just go.  Oh, the little stressors! 

I've been working on this post for days.  So, I hope it makes sense.  Lots of interruptions and breaks make for a difficult focus! 

So, that's it for now.  I'll update more when I can.  Thank you so much for all your kind words, comments and texts.  We appreciate the support more than we can say.  I'm sorry if you sent a message and I haven't responded yet.  It is very hard to keep up with everything while in the hospital and I get so tired and distracted.  Please know it meant so much to me to hear from you!

Much love,
Christy xo

More updates

Here's a brief summary of what has been happening in our life:

Harlie's trach scar.  It is still acting up.  It had another flare up this week.  It came out of nowhere, blew up like a bloody balloon, and broke, all in just two days.  It has had a total of four flare ups (that's what I'm going to call them).  Each time, I have thought - or hoped - that would be the end of it.  No such luck.  It is very frustrating and painful for me.  I don't think it bothers Harlie as much as it bothers me.  Honestly, it scares the hell out of me. I mean, how much more abuse and trauma can that small amount of skin take? And if she has any hope of getting that trach removed again, that skin has to be okay.

My parents.  My siblings and I helped my parents move from their house of almost 30 years into an assisted living facility.  My mom had to have spinal fusion surgery in November and it was hard on her and my dad.  We all realized they were done with going to the grocery store and preparing meals.  So my sister and I went and toured a bunch of different facilities.  We found a nice place and my parents liked it, and moved in right after the new year. Now we have started the process of going through the house and trying to get it empty and ready to sell.  This time period is challenging for all of us, in different ways.  It has also inspired me to live with less.  So, Tom and I have gone through our house and made some changes.  That's been nice.

We took a cabinet from my parent's house.  We painted it and put it upstairs to house most of Harlie's medical supplies.  I think it is pretty obvious that we've been fighting the fact that we need these stupid supplies.  We have been less than organized about them since we reacquired them a year and a half ago.  They were scattered about the upstairs hallway, her room, the bathroom closet, etc.  So, it is "nice" (as nice as it can be to have something you hate) to finally have them more organized. There are still some in her room and the bathroom closet. I would need at least two (possibly three) of these cabinets to hold them all.  But, it is definitely better now.  Looking at the finished product makes me both happy and sad at the same time.

I didn't get any before photos.  It was an off white color. We didn't want to buy any paint, so we used what we already had.  I painted the inside a cream color and the outside a purple.

While painting the inside of it, Mabel went through the paint tray and I didn't notice.  Oops!

Tom's Heart Cath.  Tom has SVT.  In the simplest explanation - it is an extra loop that his heart beat can get stuck in.  It makes his heart rate go up to 230 bpm.  For most of his life, he has been able to force it out of this loop and get it back to a normal heart rate.  However, recently, it has been harder and harder for him to force it to stop and thus, it would stay in the 230s for longer than he liked.  It also forced him to stop his work out, or his hike until it would stop.  Around Thanksgiving, we went to the gym together and it happened.  He had to stop his work out and it remained in the 200s for almost an hour.  He spoke to a friend of his who is a cardiologist and he got him in to see a doctor about it.  We saw him in December and he explained that he could fix it during a heart cath.  Or Tom could take meds to help.  Tom did not want to take meds every day, so he chose the heart cath.  I mean, what's the big deal?  Harlie's had almost a dozen of them.

That heart cath was January 11.  It was so weird being there for him instead of Harlie! Of course, it didn't go as expected.  Turns out he had TWO loops.  One was 200+bmp, the other was 130+bmp.  But, since the 200+ was so high, he didn't really notice the smaller one, even though it was happening a lot more often.  These loops (or pathways, I think is what they really are) are congenital.  Interesting.  Anyway, he ablated the 200+ one successfully.  But, the 130+ one was in a difficult spot, deep in the lining of his outer wall of one of his ventricles.  It was hard to get to and when he ablated it, it would stop, then start up again.  Each time he ablated it, the heart swelled in that spot, so he would have to ablate a different spot.  This went on for quite some time (like hours).  In the end, Tom's blood pressure dropped, and the doctor had to stop trying to get it.

As usual, I was the last one sitting in the waiting room.  And he couldn't go home as planned, they had to keep him over night.  Thank goodness for our cardiologist friend, Massimo.  He kept checking on me, then going into the cath lab to get a report to tell me what was happening.  I am so grateful to Massimo for doing that!  I was constantly fighting my PTSD (which makes me envision the worst case scenario). So, he was a great distraction.  Thank you, Massimo!

In the end, Tom had the heart cath, still has to take meds (for now anyway) and will likely need another heart cath sometime this year to get that second loop.  It can take up to six months for his heart to heal and see where he lands.  So, he has to be patient. It also made us look at what Harlie goes through when she has heart caths.  It wasn't pretty for him and it took him a good, solid week or more before he felt like himself again.  We can't believe we have done that to Harlie like 10 times.

Harlie's Heart Cath.  Speaking of heart caths, yes, she needs another heart cath, too.  It is scheduled for February 26.  I hate that it is during the "year mark" of being there last year.  February 26 was Post Op Day 5 and it was an awful time.  It feels like it was yesterday.

The dogs.  Oh, my poor dogs.  Sometime around November they started itching.  It is awful.  I have taken them to the vet so many times over the past few months.  It has just gotten worse, even though they are on daily medications.  Especially for Rooney.  Poor Rooney has lost so much of his hair and is just miserable.  He as not been himself at all.  A few weeks ago, it got so bad that they were keeping us up at night.  Uninterrupted sleep doesn't come easy to us (we still have to sleep with a baby monitor for Harlie so we can hear her and her alarms), so we had to move them downstairs.

It was frustrating because I just kept going, spending money, and getting no answers.  I changed our laundry detergent to a free and clear one and washed laundry over and over, thinking what we were using was the culprit.

But, this past week it got really bad.  And each day Rooney looked worse than the last.

So, I took him - again.  He has lost three pounds since I took him in December!  Poor guy!  They were shocked at how bad he looked.  So, they did some tests and the vet came back to tell me that Rooney has scabies!!!  WHAT?! He asked me where he's been, because he said he didn't get it from our backyard.  Well, we went to a friend's farm for our family photos on December 29.  They ran all over that place and loved every second.  Maybe they came from there?  Who knows. I love the photos, and since scabies is treatable, it was worth it.

The vet thinks they already had the itching issue, then got scabies, which made our last month so much worse.  Thank goodness we moved them downstairs and haven't let them in our bed!  The vet gave Rooney a shot while we were there.  We gave him, Mabel and Morty (Mabel's brother who comes over a lot) meds.  And I gave them medicated baths and washed all their bedding.  We will retreat them again in three weeks and hopefully all will be gone for good!  Rooney is already so much more like his old self again, I am so happy for that! 

Morty, Mabel and Rooney, with his face down. He was not himself at this time.

Just some more pug pics, because why not?

Mabel and Morty (on his back).

Murphy eating, Mabel hoping to sneak a snack.

For Christmas, Tom gave me a puzzle.  I did it and this is how it ended. I had three empty spots and three puzzle pieces that didn't fit into any of the empty spots.

Crazy, right?

Okay, I'll finish this one up for now.

Much love,
Christy xo

Trach scar issues

To pick up where I left off...

After her scope in DC on November 30, her trach scar "flared up" again.  It swelled up and looked like it was filled with fluid. Her secretions increased and turned orange - bright orange.  It was crazy. I watched it closely every day.  I took pictures of it every day so I could see changes and study them.  I sent those pictures to her doctors.  Something must have gone wrong with my email, because I didn't hear back from any of them, and that has NEVER happened before.  Her doctors are so incredibly responsive and attentive to our issues.  They know that I only email them when I feel it is absolutely necessary.  The two days I waited for a response were excruciating.  I went straight to the top - directly to the source for answers and comfort.  If they couldn't help me, no one could.  It was a very lonely and scary feeling. 

So, I emailed them again, this time starting a new thread.  My last e-mail was a response to an ongoing conversation.  Maybe it got lost in the messages.  Thirty minutes after sending the new email, her ENT called me on my cell phone.  Wow!  We talked and he was very understanding.  He asked if I could bring her to see him the next day.  He wasn't in clinic that day, but would come down whenever I got there to see her.  I felt like I took a breath for the first time in days!  I felt so much better just knowing I had backup.

I drove Harlie up to DC the next morning.  It was the Thursday before Christmas.   He came down and met us in the clinic.  He said he needed to drain it.  While waiting for the supplies to do that, he changed her trach.  When he took her trach out, he looked in the stoma and felt the bulge in her trach scar.  It deflated and went flat.  He put the new trach in.  He said it was air. Somehow, when she was coughing, there was a track for air to get stuck in the scar tissue.  So weird.  So, luckily he didn't have to drain it.  And he said she had tracheitis (the increase in orange secretions).  He put her back on Clindamycin and said she had no abscess, which was great! I was so relieved!

I took the opportunity to explain how I was feeling.  I told him that for so long, I went on my gut. But, after 12+ years and the last one and a half years of scary moments, my fears are growing.  I have so many more horrible experiences and memories that they are getting jumbled in with my gut and it is hard to tell what I'm reacting on - fear or gut?  It gets confusing.  And I can't be the mom that cried wolf.  I need her doctors to know and trust what I say.  So, I don't want to be wrong, or overreact.  But, I don't want to under react, either, and miss something that could be detrimental to Harlie.  Ugh. Some days I don't know how I live this life.

Anyway, he was very understanding and compassionate.  He said that this is her airway, so it is better to be cautious.  If this were happening on her arm or leg, I would have been WAY less concerned.  Especially with our past experiences where her airway and wound infections have put her in life threatening situations.

So, we left the hospital and happily went home.  I was feeling SO much better and was happy that I could potentially be less scared during Christmas.

Then, on December 29th, the day we had family photos scheduled, she woke up with another flare up. This time, it looked red and angry and there was a spot that looked like a pimple. Ugh! As the day went on, it got worse.  And by that night it was so unsettling!  It was almost like a blood blister, but grosser.  I'm guessing you don't want to see the photos.  Oh, the things I have to see, photograph, zoom in and study...some things just aren't right.

That night, while she slept, it opened up and drained.  It looked so much better the next day!  Now her trach scar is flat and looks way less angry.  So, I don't know what the heck that was, but it appears as though it is healing, finally!

January 30

Oh, I have tried to finish this post so many times!  I'm just going to end this here and then start another post, because, as so often is the case, the story doesn't end here. 

Thanks!
Christy

General Update

Hi!  I'm sorry it has been so long since my last update. It has been a busy time.  Here's a snapshot of what has happened in the last few months:

September
Murphy's first season of high school cross country.
Harlie turned 12.
Cooper turned 10.
We Heart Harlie and Friends - first Gala.

October
Family camping trip.
Harlie's appointment with her orthopedic doctor for her spine.
My trip to Sedona, Arizona to meet up with friends/moms of complicated kiddos.
Halloween

November
Chris Stapleton concert.
Harlie's eye appointment (since she "failed" the visual screening at school).
My mom's spinal fusion surgery.
Local ENT appointment.
1st West End Orthodontics Turkey Trot benefiting We Heart Harlie and Friends.
Thanksgiving.
Harlie's scope of her airway and lungs.

December
Mumford and Sons concert.
Steelers vs. Patriots game.
Harlie's trach scar/wound issue.
My birthday.
Christmas.

So, where to start? I guess I'll start with her scopes on December 1st.

She had a CT scan of her lungs, then went into the OR for a scope of her airway by her ENT, and then a scope of her lungs by her pulmonologist. All of this was technically supposed to happen months ago.  The last time she was scoped was in May.  They wanted to do it again during the summer/fall to see how things were looking and to see if there were any more signs of Plastic Bronchitis (the last sign of PB was in February 2018).

This all was scheduled for October, but she got sick right before, so we had to cancel.  Then the next proposed date was at Halloween and since that is her favorite holiday, there was no way I was going to risk her missing it.  So, we were still working on finding another date when both of her doctors were available.

Then, on Thursday, November the 8th, I noticed her scar around her trach stoma looked odd.  I took a closer look and realized that the scar tissue looked puffy, like it was full of fluid.  Her stoma had such a hard time healing after her airway reconstruction that it was hard not to freak out and be so fearful that it was going to open up again.  That would be SUCH a disaster.  And she's had a healed wound/scar tissue dehis (open up) before that almost ended very badly, so the fear is real.  That was eight years ago and I remember it like it was yesterday.

Anyway, I sent some pictures to her ENT in DC and her local ENT and they called in some Clindamycin. It did seem to help, but by day 11 of the antibiotic, it was still puffy.  So, I was scared that it was going to get worse again as soon as the Clinda was stopped.  So, we saw the local ENT.  She suspected that it was filling up with fluid and/or air.  So, she was thinking it should be drained while she was under anesthesia.  Since we had this scope that still needed to be done (also under anesthesia) her ENT in DC went on ahead and got it scheduled pretty quickly.  Of course, within just a few days  of seeing her local ENT, the scar tissue settled down and did not fill up with fluid and/or air again.  Typical.  But, we continued on with the scopes anyway since they needed to be done.

As far as how things went... it is kinda hard to explain. It is hard for me to understand, and even more difficult for me to help others to understand.  But, basically this is how I understood it:

Airway
The horrible scarring you see on the outside of her stoma, also exists on the inside of her trachea.  Scar tissue in your airway is not good.  He said that it basically healed around her trach cannula (the tube that goes in her airway) so it formed like a sleeve.  I asked if he could remove it, but it is not that simple.  So, no, he cannot. He might be able to do something in the future but, that is too far away for me to think about. Anyway, her airway is so friable, irritable and angry.  He said the slightest touch makes it bleed. He said it is almost as if her body doesn't like the trach.  And as he was saying that, he said maybe her body is reacting to the material the trach is made out of.  She had this brand of trachs for nine years.  Of course it makes sense that her body wouldn't like that material now. Ugh. So, he said that if it doesn't calm down in time, we could try a metal trach.  I know adults use them, but it sounds uncomfortable to me. So, we'll see.

In summary, we can safely and easily do trach changes, she has a voice, and her airway is stable.  So, we are going to leave it alone for now.  She has some things coming up that require her to go under anesthesia, so there is no reason to even talk about trying to get the trach out. Which, honestly, I think is a pipe dream at this time.  There are so many obstacles in her path.  It makes me more sad than words could ever say...  Her airway was GREAT on August 7, 2017....

Lungs
The good news is that her lungs in general, looked good.  He saw no evidence of Plastic Bronchitis, which is great and a huge relief.  However, the CT scan showed some malacia (floppiness) in the lower left lung.  This is a new finding. And might explain why she is so easily winded and out of breath.  Since she had almost two of her three right lung lobes removed, she NEEDS every inch of her good lungs.  When ANY part of her good lungs are compromised, she feels it.  She has NO reserve, and never has.  So, it looks like she's using even less of her lungs than she had.  Not sure what this means - will it correct itself?  Will it get worse?  What caused it? I have no idea.

The past 16 months have really taxed my brain.  I've noticed that I need more time to process the information I've been given. So, I have a hard time asking all the right questions while I have the doctor in front of me.  I will have to email him later for more clarification.  He said the same as her ENT, let's leave her alone for now and give her time to heal.

So, in general, not great news.

I was feeling crummy and tired, in general.  We left the hospital in April, went back for a one night stay for a scope in May, so we had a "good" break of many months.  Yet, it felt like we were JUST there!  Eating meals while in the hospital can be depressing.  Which is why I was so thankful that my friend Mona texted me and asked if I wanted to get out for dinner.  Oh, thank goodness for good friends!  We went to my old favorite, Brookland's Finest.

The next morning, the doctor who has done almost all of her heart caths came in to see us.  He said he had talked with her cardiologist and they want us to come back in 6-8 weeks for another heart cath.  He will do a study with oxygen and then a study with nitric oxide to see how her body reacts.  If her body reacts well to the nitric oxide, then they will start her on Sildenafil (a medication that can help lower pulmonary pressures, I think).  Her pressures are pretty high.  So, so much for leaving her alone.

But, how can I say no to this? IF her body reacts well to the study, and they put her on this medication, then MAYBE her pressures will go down and MAYBE she will have higher sats and more energy??? I have no idea, really.  Another email I need to send...

So, that's that.  Not great, all around, in my opinion.

And she's getting so much more aware and curious.  When she is dealing with something painful (like her bone anchored hearing aid site oozing) she asks, "Why does this keep happening to me"?  Then, she asks if this happened to me when I was a kid.  Which, of course, none of the crap that she has to deal with has ever happened to me - or most kids for that matter.  While in the hospital she asked that several times.  It broke my heart.  I wish I could stop this from happening to her, but I can't.

She's also looking for some control.  On Saturday morning, I asked her if she needed to use the potty.  She said, no thanks! I waited a while, then asked her again. After a few hours, I didn't ask, I told her to go potty. She said, "I will go potty AFTER you take this thing out of my hand."  She was talking about her IV.  So, it was well after noon when her nurse removed her IV.  THEN, she said she would go to the potty.  So, that's how it's going to be...

She is so funny, though.  She likes to talk to everyone that enters her room.  A woman came in to change the trash bags and Harlie said, "Excuse me, what's your name?" Then she asked what her favorite color was and if she had any pets.  Haha!  Doctor, nurse, custodian - doesn't matter to her! That lady was so tickled that Harlie wanted to learn all about her.  I hope it made her day.

I wrote this post weeks ago and never got back to finish it.  It has been 7 weeks since her scope and I have not scheduled that heart cath that they wanted to do in 6-8 weeks.  Oops.  I don't think either one of us is ready to go back and do that yet.  I know that may be hard for some to understand.  But, it is true.  She is doing really well right now and I just don't want to take her back there yet.

Anyway, I'll stop here for now.  I have another post I want to work on.

Thanks for reading!  Much love,
Christy xo