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.
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| My high school friends, Mike, Mike and Kim. |
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| 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.
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| Harlie was trying to block Cooper's face. |
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| This is me telling her to stop. |
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| 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.
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| 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
