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

September Recap

Hi! So much time has passed, that it is hard to know where to start. Here's what I started to write ages ago... 

September 1, Wednesday

We left the hospital and made it home five minutes before the IV medication/supplies delivery.  It is so funny to me how important the "little things" are to us - especially during stressful times. We were expecting IV medication balls (which is what we've used the two other times she's come home with a PICC line in 2010 and 2013).  The rep that visited Harlie's room in the hospital told me they would be the medicine balls, and they need to be stored in the refrigerator, so Tom cleaned out the fridge in the garage so we would have room. We opened the medication box and they were NOT the medicine balls, and the instructions said to store them at room temperature. Of course. 

The reason why this switch was frustrating to us is because with the medication balls, there is very little room for error. It was as stress-free as dosing IV meds at home could be. With the meds this time, we had to mix the meds, and prime a line. The line had to be changed every 24 hours. But, in between doses, you had to make sure it was protected and kept clean. And when you are tired, it can be stressful to double (okay, triple) check yourself every time you alcohol swab, put in saline, alcohol swab, hook up the meds, wait for it to finish infusing, alcohol swab, saline, alcohol swab, heparin, etc. I know I made this harder than it was. I was just always so scared I was going to make a mistake and accidentally hurt her. 

The meds were ordered for every six hours. And she came home with med times at 3pm, 9pm, 3am, and 9am. It took about an hour or more to infuse. So, the 3am one was awful. We slowly adjusted the times and changed them to 5am, 11am, 5pm and 11pm.  Any way you do it, you're going to lose some sleep. Meds were ordered for 14 days. But the ID doc at the hospital told me that it would more of a clinical decision as to when to stop (based on how her skin looked). 

September 2, Thursday

We had already scheduled an appointment with a new-to-Harlie Electrophysiologist (EP) from Children's National that works out of a satellite office here in Richmond. I can't remember if I mentioned earlier, but Harlie's pacemaker has about a year left on the battery.  It is a minor surgery to replace the battery, IF the leads to her heart are okay. They placed the leads in her heart when she was just four days old. She is about to turn 15. So, I guess they test them or something ahead of time? So, now that we are at a year out on the battery, we have to see an EP more regularly and send submissions from her pacemaker every month. We do the submissions at home, and it goes through the phone line? Well, it used to go though a phone line, but maybe now it goes wireless?  I don't know, nor care really. It goes through, and then they call me to tell me all is well. 

Anyway, so we went to see that doc. She was nice and all was good there. Apparently, the typical method is to wait until the battery is really low before you change it. It has some safe guards and will go to other battery-saving settings until it gets replaced. She said it just doesn't shut off one day. But, in Harlie's case, there are no guarantees that things will go as planned. Often, other issues will come up that change the priority list (surgeries, infections, sickness). So, they are going to leave some room for error. 

I had to laugh when we went to the appointment. Look at the sign on the elevator. 

Okay, Harlie, just wheel yourself out, and we'll meet you in the lobby.  You have a two-year old? Just let 'em go down alone. I mean, that is the safest, right? Haha! 

September 3, Friday

A friend of mine surprised me with cupcakes and cookies. I couldn't get a picture before the cookies were eaten. 

Thank you, Shawn! You are the best! xo

September 4, Saturday

Harlie broke out her guitar and found a website that teaches you how to play - all on her own! She has been working hard all by herself. She went through all the free aspects of the website and then got to a place where you have to pay for a subscription to get to the next thing. She brought her tablet to me to do it. I have NO idea if this is a good website or not. 

So, I asked Facebook for some guitar lesson recommendations. I don't know if you remember back in May when Harlie was in the hospital here at VCU, she had a music therapist (Brooke) come and play for her. Well, she reached out to me and said she would love to work with Harlie and will come to our house every week.  She has now come two times and she says Harlie is doing great! She's already learned so much on her own! I had Harlie show her that website and ask her if it was worth doing and she said yes. So, we got her the subscription so now Harlie can practice to her heart's content. 

We will definitely have to get her a better guitar. We'll see how she does over the next couple of months and we'll get her one for Christmas if she's still enjoying it. 

September 8, Wednesday

This was the first day of school for the boys. 

Cooper - 7th Grade

Murphy - 12th Grade

I went to Harlie's school on the 7th to make sure all was okay for Harlie to start. She is supposed to go to school for Advisory class every morning, and she is taking Art later in the day (every other day, since they are on a block schedule). Well, there is a lot of paperwork the school nurse has to do and she didn't realize that Harlie was going to be in the building, so that took some time. Unfortunately, that meant that Harlie had to wait a bit to start. 

I also found out that Harlie's teacher who has been coming to our house for a long time (I think she's been teaching Harlie since the 3rd grade) will not be returning as her teacher this year. It is so hard when we get attached to people and they have to leave. This change started a landslide of feelings for me and problems getting Harlie on track for school. I can't possibly go into it now. Just know that when your kid needs a teacher with special skills, patience, ingenuity, creativity, compassion, etc., and you have one that you like, a teacher change is a BIG FREAKING DEAL. 

September 9, Thursday

Harlie had an appointment with both Infectious Disease and wound care, both in DC. Unfortunately we couldn't see the same ID doc we saw when Harlie was in during her PICC line placement. Coordinating ID and wound care wasn't easy. So instead of driving to DC on two different days, I sacrificed the doc for the convenience. Rookie mistake. There is no convenience in special needs. I don't know if the outcome would've been different or not. But, this doc felt confident that the infection was gone. She said there was no evidence of an ongoing infection and that she felt it was very unlikely to have gotten to the hardware in her jaw. 

My eyes must've looked skeptical over my mask, because she asked me what I was thinking. I told her I want to believe her and I want her to be right. But so often providers are wrong. I'm not saying that in a mean way. Harlie is a complex kiddo and oftentimes things just don't go the way one would expect. With her, you have to expect the unexpected. I think being wrong about this one is too risky and I said as much to her. 

But, then she explained to me why it wasn't beneficial to keep her on the meds longer. I was a little concerned that she was thinking about how hard it was on us parents to deal with the PICC line. Granted, it isn't easy. But, I told her I would do it for as long as I had to if it meant not having to take out the jaw hardware. 

In the end, she discontinued the antibiotics after a 14-day treatment (which was the following Monday, September13th). I spoke my peace, but I am no ID doc.

While we were there, we had to give Harlie a dose of her IV meds. That was a little bit of a pain since the meds have to be higher than Harlie's arm to drain in. See, if we had the medicine balls, it wouldn't have mattered. 

Anyway, Harlie told us that we needed a pole on her chair. I don't think we understood what she was saying, so she drew it on her tablet.  

She said she needed a new (or different? I don't remember) wheelchair. Of course, we said, Harlie, we don't have a different wheelchair. Where are we going to get one? She said "here" and we were like, no, there are no wheelchairs here. 

Then we left and when we got off the elevator, look at what was right there.

That's what she meant! She meant borrow a hospital one! Duh! We both saw the chair and she said, "Told ya." She doesn't get enough credit for being right. 

September 11, Saturday

Tom and I went to a wedding shower for Caylee (Harlie's nurse) and Blake. It was a lot of fun. 

Blake, me, Caylee and Maggie

September 12, Sunday

We went to a bridal brunch for Caylee. 

Harlie is a junior bridesmaid, so she got to go, too. She had a great time and "won" a guess how many kisses are in the jar. What a coincidence that the prize was a Ty plushie (that she didn't already have!) and some cute fingernail polish. Haha! That Caylee thinks of everything!

It was also the first game for the Steelers, which they won. Spoiler alert, they haven't won again since. 

September 14, Tuesday

A nurse came to remove Harlie's PICC line. That went fine. 

September 17, Friday

Today was Harlie's first day back in the school building since November of 2019! Maybe I've already mentioned it (so sorry) but Harlie got the flu in November of 2019 and spent two weeks in the hospital (most of it on the ventilator). Since she had jaw distraction surgery scheduled for March 6, 2020, we just couldn't risk her getting sick again, so we kept her home, thinking we would send her back to school after the surgery. But, then Covid happened.  By the time kids were able to choose to go back, we were gearing up for Harlie's TMJ replacement surgery in April of 2021. So, we didn't think sending her back was a good idea.  Now here we are... almost two years later, and she's finally back in the school building. Look at how happy she was!

Woohoo!

Sometime in later September, we had some issues with Harlie and her education. Again, too much for me to go into in this post. All I can say is that I felt very worried that Harlie would get even further behind and not get what she needs in order to be as successful as possible. Having to micro manage her health and her education (plus work outside the home) has left me completely spent. This is a really hard thing for me to try and explain to those that have never had to do either of those things - much less both at the same time. I'll have to save her education for it's own dedicated post - IF I ever get the energy to re-live it and write it down. 

September 23, Thursday

Sigh. I wish I could say I was surprised. Sometimes, I really hate it when I'm right. 

The growth grew back! Less than 10 days after coming off the antibiotics. I hope they told the ID doc that said she felt confident it was gone. This is a prime learning opportunity for her. 

I took a pic and emailed her ENT in DC. He called me that afternoon - but I was in a meeting and didn't see his call! Ugh! But, he contacted her ID doc and she called me later that day (her original ID doc from her hospital stay - NOT the one we saw who discontinued the antibiotics). She scheduled a virtual appointment for us to talk the very next day (Friday) and scheduled an in person appointment for Monday.  

September 24, Friday

During our virtual appointment, she put her on an oral antibiotic for me to start immediately. She even called our local CVS to make sure they had it in stock (it is a liquid, which is not the common what it is prescribed). They did not, so she found another local CVS that did have it and called it in to that one so I could get it asap. Docs don't normally do that, so I really appreciated her going the extra mile. 

September 25, Saturday

Today was Harlie's birthday!  She turned 15! 

For her birthday, she wanted to go on a long walk, go on a picnic, and I can't remember what else right now. Oh, maybe plant some bulbs? We did everything she wanted to do that day. I took lots of pictures, so I'll have to dedicate a separate post for that. I think she had a great day. 

Oh, the things that interest her. 

Dad showing her.

September 26, Sunday

Today was Cooper's birthday!  He turned 13! 

For his birthday he wanted to do some stuff with his friends, which he did. I can't remember if I have said this before (pretty sure I have) but gift giving is NOT my love language and birthday parties are not my strength. 

September 27, Monday

We had Harlie's appointment with her ID doc. She called in the wound care nurse who saw us when Harlie was in the hospital. By this time it had already grown back to the full size it was at the time of removal. So crazy, and extremely disappointing, at how fast it grew back.  Her doctor expressed that she is willing to give this antibiotic a chance. She is totally supportive of trying to save these joints as long as Harlie's health isn't at risk. At this point, the infection looks like it is at the skin only (not in her blood). 

The wound care nurse (Sam) said there is nothing to do really, since it isn't an open wound - it is a closed growth of some sort. Her ID doc did say it is a very unusual reaction to an infection, and she hasn't ever seen this exact situation before. That is so Harlie. 

Within a few more days of being on this antibiotic (Doxycycline) the growth started to "dry" up and shrink. So, it appears to be working. We will stay the course for a while and make decisions as we go. 

I will stop this post here because it is already so long. I will pick up with October soon. I can't believe how much of my life I share and could share. In the interest of time, both yours and mine, I've skipped a lot of stuff. Haha! Shockingly, this is just the highlights. 

Thanks so much for checking in, continuing to read my posts, and being so incredibly supportive of our girl and our family.  I appreciate it more than you'll ever know!

Much love,

Christy xo

Update

Hi! All is going okay here. It has been very busy. Harlie got the PICC line on Monday and they admitted her so they could make sure she had the right antibiotics on board. Plus, it takes some time to set up getting the meds delivered to our home. 

I'll spare you all the details of "plans" constantly changing. You definitely have to ask a lot of questions and stay light on your feet while in the hospital.  There have been lots of people to talk to - ENT, wound care, ID, cardiology (she got an echo while she was here). And I got to see Harlie's social worker and spend some time talking with her. It is SO good to talk to someone who understands this hospital life.

Anyway, I'll summarize with what I know at this point... 

There's no way to tell where the infection is exactly (whether it is on the skin only and/or if it on her joints). So, we treat with IV antibiotics and wait and see what happens. The length of time she will be on these IV antibiotics will depend on how the wounds look. If they heal and go away, we stop treatment, and then wait and see what happens. If the wounds come back, then that tells them that the bacteria is on the joints.

I suppose if the wounds don't heal at all, that could mean the bacteria is on the joints as well. So, we'll just have to wait and see. 

Right now she is on Unasyn and she gets it every six hours (she was on Vancomycin, but they changed it to Unasyn last night). So, they are trying to discharge us in time for me to drive home and be home by her 3pm dose. A nurse is scheduled to come to our house with a week's supply of the Unasyn and make sure we know how to administer it. I think this is her 3rd PICC line, so I remember how to do it. It is now 11am, so we'll see how this works out.  

Yesterday was me and Tom's 19th wedding anniversary. We will have to celebrate later. Harlie put the date on her calendar on her tablet. So, first thing yesterday morning she said, "Happy Anniversary!" She's so sweet. Later in the day I got a text from Murphy -  i wanna pierce my ears. Insert eye roll emoji. Sigh... parenting is so fun sometimes. I mean, does he even know we are in the hospital?! Haha!

I know she always looks like she's all smiles, but it really isn't like that all the time. She had a really rough night Monday night.  She was so sad and seemed so lonely. This hospital life is SO hard. I watch her walk gingerly to the bathroom, things connected, and she is way too experienced for her age. It makes me so sad. I feel lonely, and I have friends to talk to, friends who love me. She doesn't. I really need to figure out a way to get her connected to some other kids. 

Last night my friend Mona came to pick me up and she took me to dinner.  We had a great time with lots of laughs, great food and wine. Thank you, Mona!!! 

I have to be short because I need to pack us up and take some things to the car so I'm ready to walk her down as soon as they are done with the discharge stuff. 

Oh no. Harlie's nurse just came in to say that she heard there was a snag with her home meds. Yesterday I heard all was fine and set up.  Ugh. Not sure what's going on. Hopefully that is just miscommunication. 

Well, thank you for all your sweet, supportive, encouraging comments on Facebook/Instagram. We appreciate you all and your willingness to go through this with us more than you know. 

Much love,

Christy xo