October Recap

Dear Diary,

Haha!  That's what this feels like. Nothing like publishing some of your innermost thoughts. 

September 28, Tuesday

Tom and I went to see Nathaniel Rateliff with some friends tonight. The concert was at VACU Live (Richmond Raceway). That is a great venue and it is outside and the weather was great. We have missed live music so much!

September 29, Wednesday

Murphy had some professional day at school for marketing class today. This is how he went to school...

Oh, this kid can only be but so serious. Haha!

Two of Harlie's friends came to visit her tonight. I don't know if you remember my post from when Harlie was in the hospital in August. I told you about how Harlie had a rough night and she said she missed her friends. She was talking about her school friends and if you remember how I mentioned that she's been out of school since Thanksgiving of 2019, you can see why. I'm guessing people don't know how to include Harlie. I know she isn't great at having a lot of conversation with kids - she just hasn't had enough exposure to that scenario. I do wish it were easier for people to ask me. Maybe it just seems like too much work? I don't know. At any rate, I really struggled with myself on this one. I don't want to ask too much of other people. And I certainly don't want to make anyone do something they don't want to do. But, if they want to, and don't know how, maybe I should reach out and make it easier for them?  As I said, I struggled with myself on this one. 

I finally decided to reach out to a good friend of mine whose daughter has been great with Harlie and she has a mutual friend that was great with Harlie in the past. I asked her if she could see if the two of them would want come over and hang out with Harlie.  And she said they wanted to and were excited to see her. Yay! 

So, they came over and brought Harlie a birthday gift - a picture holder, and they took polaroid selfies. They also brought beads to make bracelets and some other activities. 

Thank you, Lindsay, for making that happen. It is amazing what just a little time with friends can do to one's spirit! 

October 2, Saturday

Tom and I met some friends out at Mainline Brewery to see a local, fun band, Flat Elvis. 

My high school friends, Mike, Mike and Kim.

Mike and I

October 5, Tuesday

Today Harlie was FINALLY able to have her audiology appointment WITH a hearing test! We've been trying to do this since her surgery in April. Ever since that surgery, she has not been able to put in her hearing aid. The TMJ surgery must have changed the position of her temporal wall, which changed the shape of her ear canal, so her hearing aid no longer fit. And she had so much debris (dried blood) in her canal from the surgery and the incessant bleeding that occurred for weeks post-op. But, her ENT cleaned that all out in August. 

Anywho, combine all that with that weird growth, she couldn't get her hearing tested. So, finally, her ear was cleaned out and the growth shrunk (again) down enough that she could put on the hearing test headphones.

I love her audiologist.  We've been seeing Ann for longer than I can remember. Well, Harlie was a wee babe then. So, Ann totally gets how I had to constantly reschedule this appointment and she was so understanding and patient. And she really thought about her complications and had an idea before we got there.  She changed her hearing aid to more of an adult type of fit (vs. an ear mold) and it worked great! So, she was able to do it right there, and we didn't have to wait for the mold to be done and then come in (usually takes weeks). So, after her test, and Ann working her magic, Harlie walked out with her hearing aid IN for the first time since April! I can honestly say - we are ALL happier.  Haha!

Also, during this week, we met Harlie's new teacher. She actually has three now. There isn't one teacher who has the ability to cover all of the hours that Harlie is supposed to receive in a week. So, they had to assign multiple teachers.  This is a logistical nightmare for me. I hate too many details. My brain is too full of Harlie's medical details that I have to remember for me to take on logistics like this. 

Here is what we are trying to schedule in a week's time:

• Three different teachers (who each have their own schedules they are working around).
• Two speech therapists. There really were four, but Harlie's on a wait list for one (Amy, we are not ready to let you go!) and I had no choice but to give up one of the STs to open up her calendar for her teachers.
• She's on a block schedule (day 1, day 2) so she goes to Advisory class every morning, then she has an afternoon class pretty much every other day. This means that you can't easily just schedule things for Mon/Wed, since every other week, she'd be missing class. 
• Add in doctor's appointments, and really, there just isn't a groove you can settle into. 

I also switched Harlie from Art class to Independent Living. There wasn't room in any 8th grade classes, so we put her in a 7th grade class.  They are learning to sew and she loves it! 

October 6, Wednesday

Murphy finally got his driver's license. I'm reminded of how it was to parent young children. You think you can do so much to protect them. But now, he gets into a car and drives away. I know I'll get used to it - as every parent must. But, it is weird. And sometimes really hard. I'll tell you more about that in a minute. 

October 7-12

I went to the Grand Canyon and hiked the Rim2Rim - North Rim to South Rim, in one day! Clearly, I'll have to save that for it's own post. 

October 15, Friday

So, I got another tattoo. Teresa did all the outlines. I'll go back in November to have it colored. I'm pretty excited. I'll blog more about it when it is all done. I'm sure some of you think I'm crazy. I'm actually okay with that. I've earned it. 😉

October 16, Saturday

Murphy went to Homecoming. 

I had a somewhat difficult parenting moment that night. Tom and I were watching TV after 10pm (waiting for him to come home, of course). The window was open, and I heard a ton of sirens very close by. I had a PTSD moment and wanted SO bad to call him to make sure he was okay. But, I don't want my kids to worry about me, worrying about them. So, I kept on telling myself that he was okay, and I did not call him. 

And he was. He said he had a great time. 

October 17, Sunday

I learned the reason for all those sirens last night. There was a hit and run less than a mile from our house.  Unfortunately, a 27-year old man died at the scene. So sad!

Harlie loves to go apple picking. We used to go every fall. But, a couple of years ago, we realized that it is just too hard to take her. Clearly, this activity is not wheelchair friendly. And it would be really hard to piggy back her the whole time.  This is not an easy thing for us to admit. I forced us to go to the pumpkin patch last fall.  That was a nightmare and we swore we would never go again. That activity is also not wheelchair friendly. Nor is it trach friendly with all the dust that the tractor ride things make. We worked really hard for those memories for a lot of years. It is time to try and make new ones. 

So, Tom found a farmers market just west of Charlottesville. They had lots of apples - that she could "pick" from buckets. Haha! He also found a wheelchair friendly "trail" close to the farmers market. So, we could still go close to where we would normally go pick apples, just do something a little different. She was agreeable. 

Harlie was trying to block Cooper's face. 

This is me telling her to stop. 

That's better.

Somehow the farmers market was closed. Ugh. So, no "picking" apples after all. But, she enjoyed the walk and the drive. You know, she's pretty good at handling disappointment, which is a valuable life skill. We stopped at a brewery on the way home and had dinner together. Murphy couldn't go because he had to work. 

October 18, Monday

Harlie had another appointment with her Infectious Disease doc in DC. It looks like the antibiotics are still helping. Harlie will stay on doxy for three months, and then we will have another conversation. I want to believe that the meds are taking care of it and that it won't come back. But, I just don't have a great feeling about it. Maybe I'm just trying to "prepare" for the worst, which is so silly. There is no preparing for something really bad. It's not like preparing would make it better or easier to accept. 

October 20, Wednesday

Harlie had her annual check up with her orthopedic surgeon. I really like this guy. When we chat, I feel like he listens to me. He also knows that he isn't the most important specialty in her life. He knows that she has a lot to deal with and he is realistic about how I have to look at potential spinal surgery. 

He said that her spine actually looks better than last year. That could mean that she is stronger and is able to stand up straighter for the x-ray. 

He said that her lack of growth is actually helpful for her kyphosis scoliosis (spine bends forward, not to the side). Growth spurts make the curvature worse. I mentioned that we saw endocrinology about her growth (or lack thereof). He went and printed out a frontal view of her x-ray. He looked at her growth plates around her hips and shoulders. He said they have not closed entirely yet, so she might have a little more growth left. We'll see. 

But, wow - look at all that metal in her jaw! 

I really cannot imagine having to take them out. That would be so incredibly awful, for so many reasons. 

Whew! This was a hard week. Traveling to DC two days was not fun. The traffic was awful in both directions, on both days. In fact, I had to take a detour around 95, both days! 

October 22, Friday

We went camping in West Virginia with some friends. The weather was perfect and the fall leaves and clear Greenbrier River were gorgeous! 

October 25 - 29

Wow. I can't believe it. There are NO appointments this week. I honestly cannot remember a full week - Monday through Friday - with ZERO appointments!  I was able to work four full days!  I took one day off to get stuff done around the house and run errands. For a sec there, I almost felt normal!

October 31, Sunday

Halloween, Harlie's favorite holiday. I'm gonna let her participate for as long as she wants to. This is how she came downstairs first thing in the morning. I started to tell her to change and save her costume for later. But, as I started to tell her, she looked at me with these eyes... and I stopped talking. Well, it is Halloween all day. She should just live it up. 

Harlie telling Mabel to pick her costume.

She had a great time trick or treating. This was the longest she has ever stayed out. I don't really understand what she likes about it so much. It is a lot of work for her to get in and out of the wheelchair at every house and walk to the porch. And she can't even eat the candy! I'm guessing for her it is about the experience and not the loot. 

Well, that's it for October. I hope to have some other posts for you soon. As always, thank you for your love and support!

Much love,

Christy xo

Pre-Op Day

What a long day.

We are beat.  I think Harlie fared better than we did.

Our first appointment was in Pre-Op/Admitting at 10 o'clock.  They did the basics - weight, height, temp and blood pressure.  Then we spoke to a nurse at length about Harlie's history, current status, etc.  After that, we spoke with an anesthesiologist.  She asked why we didn't do a heart cath first.  She was a little concerned about her cardiac situation.  But I explained that it doesn't work that way.  We don't have a choice.  The hardware has to come out first.  And we are here and Harlie is healthy.  I don't know what's going on with her heart and lungs - but she is NOT sick.  So, she sent us on to our next stop - admitting.  Tom handled that one while I sat with Harlie.

It was noon by this point and we had an hour till our next appointment - cardiology.  So, we went down to the cafeteria and got some lunch.  There we ran into Julie, a nurse we used to have when we were at Children's National in DC.  I saw her when we were here this summer, too.  She moved to Boston and now works here.  It really is a small world!  Anyway, it was so good to see her friendly face!

After lunch, we headed up to cardiology.  There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer.  I find him to be very easy to talk to and compassionate about her and all we have on our plate.  I brought him up to speed on what's been going on with her.

Unfortunately, the conversation wasn't great.  We won't know anything for sure until she gets this darn heart cath.  But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s).  He explained why and it makes sense.  It also is in line with what her local cardiologist has said for years.  Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning.  That's where I started my questions last year.  And we never got answers.  She is just so complicated.  Her heart function - the Fontan, is less than ideal, in a kid with normal lung function.  Add her less than ideal lung function to the less than ideal Fontan function and what do you get?  Plus, he said that she could be micro aspirating, which, over time could cause lung damage.  So far, we've never seen any evidence of aspiration, but what the hell?  I suppose she could be.  Nothing about her makes sense, so why not?  But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments.  I really don't know what else we can do.  Except leave Richmond for pulmonary.  Which I do NOT want to do.  But, I will, if I have to do.

But, I'm probably getting ahead of myself.  We have to take one thing at a time.  But, for now, Tom and I are feeling very heavy.  I don't want this to be a sign of something horrible.  But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction.  Things are getting worse.  And there's nothing I can do to stop it.  I don't understand what's going on, and neither do her doctors.  There's absolutely no comfort in that.  And we have to wait at least SIX weeks for her heart cath!  How am I going to live with this worry for six weeks?

After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa.  We didn't know how to get there from where we were.  I know how to get to Dr. Padwa's office, but I have to start from a certain place.  Anyway, we bickered about being lost, where to go, etc.  And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to.  Luckily, we are not new at this, and we realize what's happening.  So we stop it somehow.

We went to Dr. Padwa's office and met with her.  That went well.  No heavy conversation there.  She thinks Harlie looks great.  And things are so much more improved than when we saw her last.  Harlie is swallowing and her mouth closure is much better.  They got some mouth x-rays and some pictures.  That sounds easy, but it wasn't.  Keep in mind it was well after 3 o'clock by then and we were all so tired.  And trying to get Harlie to look at us and hold still, etc. was a lot of work.  And I can't even say we were successful.  I don't know, maybe.  They said she did well, but all I can tell you is that I was done.  Then we went back towards cardiology to get chest x-rays.  We would have done it while we were right there (they are next to each other) but, we didn't have time.

Here's what she looks like underneath it all...

You can clearly see the hardware in her jaw that will be coming out on Wednesday.  Isn't it crazy?  Oh, my poor sweet little girl.  There is so much going on in her little body.  It makes me so sad sometimes.

Here is a side view...

After that we were DONE.  Luckily, her cardiologist didn't make her get another echo.  And come 4 o'clock (it's scheduled time) I was so, so thankful.  There is NO way she would have been cooperative for that.  And Tom and I did NOT have the energy to help her through it.

We left the hospital after 5 o'clock.  We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing.  Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting.  I hate to sound like a wuss, but that oxygen changes everything.  And I'd like to think I'm somewhat physically fit and energetic.  Yet, it kicks my ass.

But, in those seven hours, we really never had to wait.  And if we did, it was for a very short time.  Our day in a nutshell:

1.   Spoke with a pre-op nurse.  Got vitals and discussed meds.
2.   Spoke with a different pre-op nurse. Went over history and discussed meds.
3.   Spoke with a pre-op anesthesiologist.  Went over current issues and discussed meds.
4.   Admitting, gave insurance info.  That was easy.
5.   Had lunch
6.   Got an EKG, completed paperwork about her meds.
7.   Got a pacemaker check
8.   Met with her cardiologist
9.   Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12.  Realized Tom left his cell in Plastics, so he had to go back and get it

Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING.  But each specialty has to know that the information they are looking at is current and accurate.  So, I get it.  But, it's still exhausting.

Then we left the hospital and went across the street to get some coffee.  Tom went in to order and I stayed outside with Harlie.  Those are the things you have to do when you're lugging an oxygen concentrator around.  Some places are just too crowded for our wide load.  Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears.  There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees.  No one wanted to, in case you were wondering.  And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me.  Funny.  I guess she could tell that I had enough of my own problems to worry about.  Then Tom came out and we walked back to the hotel.  Tom went and got us dinner and we ate it in our room.  Now we are waiting for the baseball game to start.

There is a lot on my mind tonight.  But, somehow we'll get through.  Harlie is happy and that's what's most important.  She was so good today.  She really is a good kid.  And I don't know how or why.  She has every reason not to be.  For now, I thank God that she doesn't understand all of this.

Thank you for all your love and support.  We are feeling it tonight, and we are so thankful.  Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night.  And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2).  And Brandy for staying at our house on Sunday night and getting them off to school this morning.  And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week.  Whew!  It really does take a village...

Tomorrow is our day off and we are all looking forward to it!  Thank you again!

Much love,
Christy xo

Ortho Follow-up

Today's appointment went well, I think.  Just a brief overview...

This is the traffic we went through to get to the hospital in DC this morning.  Click on the photo to see it better.  Not that you don't know what heavy traffic looks like.  But, seriously?  How do these people do it every day???

Hello Northern Virginia!

Luckily, I managed to leave the house EARLY for this appointment.  Mark it on your calendars folks!  It CAN happen!  And I am proud to say that I even managed to work a shower in my schedule this morning.  (insert smug face here) I dedicate this to all my stay-at-home mom friends who know what an accomplishment it is to shower on a daily basis.  You know who you are!  So, that just proves if you pack all your crap the night before and your husband comes home early from the gym to help, miracles can happen.

Once we got off the interstate and onto First Street, she called "Mama" and I turned around to look at her and she signed "home."  I told her that we couldn't go home because we had to go see the doctor first and she started to cry.  Oh, break my heart.  This is the earliest she's gotten upset.  Usually it's when we pull into the parking lot.  So, she's clearly more aware of where we are, and where we are going and recognizes the way to Children's National.  So I told her it wouldn't hurt.  And that we were just going to do x-rays and talk to the doctor and that's it.  She stopped crying and that was that.  Whew.  The best part is that my word was true.  It didn't hurt and they only took x-rays and talked.  So, maybe she'll believe me when I say it will only hurt for a minute.  Or hold still and it will hurt less.  Wouldn't that be a nice change?

Okay medically speaking...

She's cleared for gymnastics again!  YAY!  But she said she doesn't want her high off the ground.  She wants to limit the risk of falling.  She has some stiff areas in her back (plus screws), and she could seriously injure herself.  So, no worries!  Do you think I could wrap her in bubble wrap and pull it off as a fashion statement? Because I gotta tell you - kindergarten can be rough!

From here on out we will have yearly check-ups.  So, that's good.  But, when she gets closer to age 10, we will increase the appointments because there is usually a growth spurt at that time and she wants to watch her more closely then.  Of course, if we see a problem or her x-rays show issues, then that plan will change.

She said that normally one's spine has some curve in the thoracic area (top) and is straighter in the lumbar area (middle).  Harlie's is opposite.  That's what throws her forward and makes her walk a little hunched over.  I think she said she has a 48 degree curve forward.  Remember that she has kyphosis scoliosis, which is when the spine curves forwards as opposed to scoliosis, which curves right or left.  Here are her x-rays from today... they are copies of the films, and then I took a picture of the copy with my cell, so they aren't the best quality.

Side view.
That object on the left is her pacemaker generator.
And those screws look so long!

You can see her trach tube at the very top.
There are coils in her lungs (in the black space).  The squiggly lines
are the wires that hold the sternum together after OHS.
And you can see the pacemaker leads and generator
and screws and hardware.
It's a busy little body!

I asked her if we are done with spinal surgeries.  She said she would be very happy if we are.  But, she doesn't know.  Only time will tell.  She hopes that her curve forward will not get much worse.  She said if it gets to the point where surgery is necessary, it won't be pretty.  She would have to insert rods and because she has so little fat on her body, the rods would protrude and be visible.  Ew.  She also noted that she thinks that's what happened to her back after surgery.  She thinks that since there's so little fat protection that it rubbed on the cast and caused the breakdown and subsequent infection.

She's also cleared to carry her own backpack.

So, that information was given to me in about 8 minutes' time.  Maybe 10, tops.  I don't mess around and neither do surgeons.  So, here's how it breaks down...

We left the house at 7:20am
Her appointment was at 9:45am
We checked in at 9:46am (security check-in to get into the hospital was a long process)
We were back in the car, driving away at 12:40pm.
I had to go to a drive through for lunch (ugh!) I specifically took an exit that would lead me to a Chick-fil-a.  But it was closed for renovations!  Major ugh!  So, I had to go to Wendy's.  Which meant I had to get a small vanilla Frosty.  Damn you Chick-fil-a!!!
We got home at a little after 3pm.

So, in a little less than 8 hours, I got in the neighborhood of 8-10 minutes in front of the doctor.  That's efficient.

I love my life.

Oh, and I think I mentioned that I'm going to start submitting my mileage for reimbursement through Logisticare.  Well, I went to write down the mileage (which was 220, thank you very much) and other info on my form (which is barely legible, by the way, since it's clearly a copy from a copy from a copy, etc.) they mailed to me to use as MY original and I see that they require a physician's signature.

Damn it!

Tom said he'll fax it to them tomorrow for me.  Of course, by the time it gets faxed to them, and then faxed back to us - who the hell will be able to read it?!

Must not give up.  At 40 cents per mile, it will add up.  I can't believe I am just now doing this.  After all the freaking miles I have driven!!!!

Must focus on the positive.  I can now sign Harlie up for gymnastics!  And she is feeling SO much better that I cancelled her appointment to see the allergist tomorrow.  YAY!!!  Now we know we can keep this little guy...

He got a bath tonight and he smells so good!  Apparently he had some unlucky timing yesterday morning on the walk to school.  He walked under a much larger dog, who shall remain nameless, Custer, ;-) right as he was about to pee so Rooney got a little "wet."  Ew.  Tom hosed him off, but I wanted him to have a proper bath after that.

Okay, it was a long day and I need to get to bed.

Thanks!
~Christy