Thursday, April 2, 2020

Three weeks down, five to go.

I have started so many posts over the past three weeks... but they just seemed to go on and on and I couldn't stand to proof read my own writing!  Every time I go to write, it becomes too hard, too overwhelming, too painful, etc. and I have to stop.

I started this post last Friday - when we were three weeks down, and had five weeks to go, hence the descriptive title.  It is now Thursday, April 2nd and tomorrow marks four weeks down, four weeks to go.  Woohoo!  Anyway, I'm going to go back and try and finish this post TODAY.  Here's what I started last week...

I'll try again and I'll start with some good stuff.  I am so happy to report that we are DONE turning her screws!!!  Woohoo!!

We went to turn her screws on Thursday night (March 26), and Tom only got one turn in, when it stopped turning.  The device gave all it had - we turned it until it couldn't turn anymore - about 25mm in length! We knew it was getting close as the last several turns I could feel more and more resistance.  Plus, we had to write in the last few days as the chart stopped at March 21.

It was slightly demoralizing to go off the chart, but we trudged on anyway.

I just want to point out that in my last post that I hoped we would be done by then.  So, we had to do something we all HATED, that caused pain for Harlie and expected to be done with after two weeks, for one more full week.  That just sums up how we live sometimes.  Talk about being forced past your limits.

Now I'm afraid her jaw is too big.


Honestly, I'm afraid of everything.  Just for fun, I'm going to make a list.

I'm afraid...

It looks like it worked, but it really didn't.
We turned the screws too many times and her jaw will be too big for her face.
She will never look like she used to. I have loved all her faces, and I'm sure I'll love her new one, too.  It is still so hard. We have no idea what she will look like when everything settles down.
I will wake up and walk into her room and see her face swollen with infection.
I will take her temperature, and she will have a fever.
That if something bad happens, I won't be able to get her where she needs to be.
That if something bad happens, I won't know where she needs to be! (VCU, DC or Boston?)
That her doctors will be unavailable to her for her regular issues.  Her heart, her lungs, etc. does not know that there is a virus going around and that they should cooperate.
We will run out of toilet paper.  I remain baffled that there is still a toilet paper shortage. I bought some from Costco sometime before Harlie's surgery (now three plus weeks ago) and I have been unable to find any since.  Thank you to my friends who have given us rolls.
Tom's 100% commission job won't pay the bills, despite his hard work.
We will run out of antibacterial wipes.
That they will cancel summer camp for the boys.
That one of us (then all of us) will get Covid-19.
That Harlie will get Covid-19.

The other night I was tucking Harlie in, and she asked me what I am afraid of.  There was no way I could be honest with her. I kind of looked like a deer in the headlights - then Harlie said, "You're afraid of snakes."  I said, "Yes, I am afraid of snakes."

Anyway, now we just wait and hope that nothing bad happens between now and May 12th (when we are scheduled to get her hardware removed).  I don't know why, but I feel like I am a pretty positive person.  But, based on prior experiences, I can't help but think that it is very unlikely that we will go five weeks with no issues.  But, hope is a funny thing.  And so we will continue to hope...

The pin site cleaning has gotten way better.  There is very little drainage, so we can clean them once a day vs. twice a day, which is so great for all of us.

This is Harlie cutting down some of the flowers her and her teacher made to help her count down the days till May 12.

This is her "celebrating" being finished with the turning.

It is hard to share some of her photos, because I feel like they don't represent who she is.  She doesn't look like herself - in appearance or spirit.  The lack of her spirit is what I see most in these pictures.  I can see she isn't happy, even if she is smiling.  This kid is dealing with some big emotions - mostly on her own.  We tell her we love her all the time and I know she knows that.  But, she lacks the language to fully communicate how she is feeling so she just deals with it herself.

My Mom sent her some Lego sets to keep her busy and hopefully get her mind of how she feels.

A kind neighbor put a care package on our front porch and there was a crystal puzzle in it.  It is a mama and baby giraffe.  She loves it. Thank you, K.!

And she got some cute cupcake earrings that she is saving for after the metal comes off.  Thank you, E.! So cute.

Okay, I'm going to end this one, finally.  And I'll start the next one and hopefully, it won't take me another week to finish it.

Thanks for reading and for all the love and support!
Much love,
Christy xo

1 comment:

Unknown said...

Hang in there Holton family!! Harlie is looking good - with her over-distracted jaw - that's how Faith's always looked until they took the hardware off. Our surgeon said to think of it like stretching a piece of gum and then letting go, it will retract a bit. The soft tissue and muscle don't grow as easily as the bone and they will pull the new bone back a bit. So no worries that it will be too big!
Love you all, stay safe in these crazy days, I can only imagine how scared all those things you're scared of really feel.

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...