Sunday, January 10, 2016

Randy's Voice

For the last six years, Randy's voice has been fading.

He sounds a little like Rod Stewart. But without the British accent. Or the hair.

Or a Sunday morning DJ. Raspy. Dry. Hoarse.

We know about when and how it happened.

Nathan was 3 and Isaac was about 6 months old, Randy was reading a story to them on the couch. Randy is an amazing story teller. He throws his voice for each character. He remembers the voices for each character as the book progresses. He remembers each voice from each book. And we have a LOT of children's books.

Randy is a pretty amazing man. And he's incredibly smart. He's a mathematician for crying out loud! He doesn't call himself a mathematician. But I do. He can math the shit out of anything. Effin' smart, yo.

So, he threw his voice for whatever story he was reading, and it didn't really come back. But it was autumn, school had just started, and we brushed it off as maybe he was getting a cold, because all teachers get a cold at the start of the school year. I think it's written into our contracts.

Then we started having big time challenges with Nathan. He was seizing, but we didn't know that's what it was at the time; his eyes were flitting back and forth for 1-2 seconds, hundreds of times each day.

To add to it, I was going through a serious post-partum depression. Isaac was a really REALLY hard baby. Screamed bloody murder. Couldn't get him to calm down for anything. I remember sitting in the front bathroom, which doubles as our laundry room, with the dryer going, holding him and rubbing his back, while I sat bouncing on an exercise ball trying to calm him, shushing, singing, screaming (that doesn't work, just FYI). I've been in touch with some pretty deep dark emotions...all while holding an infant. No wonder the kid is intense.....

And Nathan kept screaming and Isaac kept crying and...Nathan...and Isaac and Nathan and Isaac andNathanandIsaacandnathanandisaacandnathanandisaacand...........

Our lives became focused even more intently on the boys, specifically on Nathan, and managing his medications and medical appointments. He was diagnosed with seizure disorder in October 2010; he had just turned 4 about 3 weeks before he was diagnosed. Isaac was about 18 months old and while he was no longer screaming, and I was coming out of my depression, he was--and is--so smart it was--and is--kinda scary (in a good way--think mathematician smart)

Our own stuff took a back seat, big time.

Each fall, at the start of the school year, Randy would get a cold, like most teachers do. And his voice stayed raspy.

Then came the autism diagnosis for Nathan, when he was 6, and our lives changed in the fact that we needed more information on how to best help our son. Change from a private school to the public school system. Assessments. Paperwork. Appointments. Meetings. Trips to Seattle. Children's Hospital. Autism Center. Hotels. Money. More stress. Change medications. Keep records. Doctors appointments. Pediatric Neurologists. EEG's. A sleep study. Tonsils removed. Change meds again. And again. And again.....and again....and still he seizes.

Or stuff got pushed even further back. And it's what happens when you're a parent, especially when you're a parent of a special needs kiddo.

Fast forward to about a year ago, Randy went to the best Ear, Nose, and Throat doc on the Olympic Peninsula, which happens to be a 90-minute drive south and east of us. Not an easy task to carve out 3 hours of travel for a 30-minute doctor's appointment. Really....going, getting seen and then getting home takes an entire day. Because while the drive is beautiful, it's also on a, mostly, 2-lane country road. The closest interstate is a 2 hour drive east; we live in the sticks.

The ENT in Poulsbo said that Randy had acid reflux and put him on a double dose of one medication in the morning and a double dose of another medication at night. It helped a little bit. But his voice wasn't back.

In July, the ENT ordered allergy testing for Randy. Turns out my husband is allergic everything except dogs, horses, and the American cockroach. Not kidding. So he started allergy medication, that the Poulsbo ENT makes especially for him. It's to help boost his immune system so that he suffers less. I'm good with that. Suffering less is a good thing.

When he went back in October for follow-up, they basically said, "well, everything looks ok, see you in 6 months." (I envision them patting him on the back on his way out the door...Randy said it wasn't quite like that....)

But that's when I reached my limit.

No. That's the wrong answer. You don't get to say that to a man who came to you for help with his voice.

The correct answer is "you know, I think we have reached the limit of what we can do for you. I think it's time to go see another ENT in Seattle. Here's a referral."

But they didn't say that. Not cool, you guys. Not. Cool.

We were able to get him in to Swedish Hospital, which is the best hospital around. He went over and saw the Lady ENT the Monday before Thanksgiving; she specializes in voices and works closely with a Speech Therapist. The Lady ENT said, basically, that Randy has been using his false vocal cords, and not his true vocal cords. He also has a nodule on his vocal cords that needs to be removed.

I didn't even KNOW we have false vocal cords...I didn't do too well in Anatomy and Physiology...because I took it in summer school the summer Randy and I started dating. Whoops! Not my best idea; but it worked out.

While I wasn't able to go to Seattle for this appointment, I was able to participate via FaceTime--thank you technology! And the doc and her staff didn't bat an eye at me being there in the way I was. They asked Randy what his stress level at home is like...and he was like, "well, it's stressful, but not horrible." And, of course, I interjected and laid all our cards on the table. All of them. And I said, "Because of everything we've been through in the past 10 months, we're incredibly sensitive to cancer in our family. Is what you're looking at--the nodule--do you think that's cancer?" And she said she's pretty sure--like 98% sure--that it isn't...but she wants to remove it and send it to the lab just to be sure. She said this is a pretty common thing to see in people who use their voices professionally, like teachers and singers. And the nodule is like a scar on the vocal cords. Sometimes they go away on their own.

The Lady ENT ordered Randy to go to speech therapy once a week, which he's been doing for the past 2 months. He has homework and is doing his assigned exercises regularly. His voice has improved, but it's not totally back yet. The best medicine is to reduce stress and rest your voice.

Which is kinda funny...reduce your voice....but kinda not funny......

Last week he went a massage therapist. But not just any massage therapist. He saw Jen. And Jen is a badass. I know her through Hapkido. She runs Spartan Races for fun. I've run one with her. One. And she runs them at least once or twice a year. She's a Cross-Fit instructor. She is a very strong woman, who I very much admire. And she's our massage therapist. She will rip you in half, pay her well, and then you'll ask for more. Because it's all good stuff.

Anyway, so the current hypothesis is that the muscles in Randy's back, neck, and throat are causing the vocal cords to be frozen. He is scheduled to see Jen once a week.

Today, Randy left for Seattle. He's spending the night with our good friend Jeff, who teaches both physics and astronomy at one (or two?) of the community colleges in the greater Seattle area. He's also working on his PhD in physics; smart dude. Typically when they're together they solve all the world's math and physics issues. Not really. They figure out new and exciting ways to engage their students in the hard sciences. And they're really pretty clever. I totally steal ideas from them; but I give them credit because I don't want to plagiarize their brilliance.

Tomorrow morning at 8:30 am, Randy sees the Lady ENT. Just like they have at other ENT appointments, they'll numb the inside of his nose and down his throat. Then they stick a tube with a camera on the end up his nose and down into his throat. If the nodule is there, then tomorrow will be his pre-op appointment. Surgery is scheduled for Friday January 22nd (time unknown). If the nodule is not there, then he doesn't have to have surgery.

I don't know if I'll be able to participate in the appointment. Like all things in life, it depends.

This morning, Nathan called me into the bathroom, and it was one of those urgent "MOOOOOOMMMMMMM!!!!!" calls. He threw up. He doesn't have a fever. But still. The kid is sick. His eyes are sunken in. He's got dark circles under them. His face is pale. He parked his fanny on the couch and didn't get up except to take a bath and pee a couple of times. He ate a couple of times...white rice; some applesauce. I was able to get his meds in him, and they stayed down. It is always ALWAYS a concern when he's sick. He typically seizes more when he's sick; today wasn't too bad. We'll see what tomorrow holds for him.

The TV was on all day. All. Freaking. Day. He even fell asleep on the couch during his favorite TV show (Garfield).

Isaac took a bath too; he was complaining of a headache towards bedtime. I told him that it was because he watched TV all day. But he insisted I take his temperature; he didn't have a temp.

I told them that if Nathan is like he is today, then we will likely stay home tomorrow, too. But we won't have the TV on all day. We can read and play checkers. We can play Legos. If Isaac misses a day of school, it's not a huge issue; he's doing fine academically and I'm not worried about him. I know his teacher will understand and support my decision. I'll try to get him to school, depends.....

My biggest concern is that the nodule will still be on Randy's vocal cords and that surgery will have to happen. Because if it does, then that means he cannot talk for 10 days after the surgery.

Ten Days.

January 22 through February 1.

My hope for tomorrow is that the nodule is gone from Randy's vocal cords, that Nathan feels better, that Isaac is able to go to school, and that nobody else in my home gets the crud.

I drank my sleepy time tea. I'm going back to my room to medicate and do some restorative yoga. I hope a restful sleep comes soon.

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