A little medical history

I've procrastinated writing this post, partially because I didn't know how the story was going to end, and partially because it has filled up a lot of the extra emotional energy space I have access to.  But it's an important part of our family history, so let's hope that this post does it justice.

Last fall we were simply driving in the car when Cambrie called out, "McKenzie!  What is wrong with your hands?!"  I had no idea what Cambrie was talking about so I had McKenzie pass her hands up to me so I could see.  Her knuckles were big, like old lady arthritis knuckles big.  I immediately grew concerned and we started the process of trying to figure out what was going on.  We went to her pediatrician who said that it looked like juvenile arthritis, but we needed to see a rheumatologist to really diagnose and treat it properly.  That first visit with the rheumatologist was eye opening to me.  The doctor started asking questions about McKenzie's pain levels.  I had no idea that her fingers lock up when she's writing long papers in school, or that her hips seize up and cause her intense pain when she walks a long time, or that her wrists hurt so much she can't play the bass, or that her fingers sometimes get so stiff that she can't zip a zipper, or that her wrists hurt so much that she can't do some of the skills she needs to at gymnastics, or that her knees lock up and won't let her bend them, or that her ankles and feet hurt so much some times that she can't even walk without pain, or that her jaw hurts when she chews tough food, or that her back hurts every day, or that her hips and knees hurt so much skiing that she doesn't love going with us anymore, or that she had no idea that none of that pain she was experiencing daily wasn't normal.  All of this has been going on for years, longer than she could actually remember.  

You know it's a bad sign when your doctor leaves the exam room and comes back in with another doctor.  We went through the questions, poking, and prodding again until there was no doubt.  The blood work confirmed it, that she has polyarticular rheumatoid factor negative juvenile idiopathic arthritis. It is a really long name that basically means she has arthritis in more than one joint, she's young, and it's non-rheumatoid arthritis. I was fairly prepared for the diagnosis after what I had seen, but I wasn't sure what the treatment is for something like this. She's been on naproxen for the pain, but she's only 12 and I didn't think a lifetime of naproxen every day was really the best treatment plan. Another bad sign when you're at the doctor's office is when the doctors look at you with pity. When we started discussing treatment, they both grew serious. "We want to prescribe you a low dose of a chemotherapy drug. Don't google it, it will just scare you." How can I not be scared when they say my daughter now needs weekly injections of a drug that will cause her to be sore, tired, immunocompromised, cause cankers in her mouth, could possibly cause hair loss, will make her really nauseous, and if she ever gets a fever I need to call them right away? We walked away from that first visit overwhelmed by everything we heard. My head was spinning with the training we had received to administer her injections, and the repercussions of the possible side effects. I was also really nervous about what this means for her long-term health. Can she still do gymnastics? Will it ever go away? Is she going to need injections for the rest of her life? Will she ever be able to comfortably wear a wedding ring? What will this mean when she's older? A mom trying to take care of her kids but feeling too ill do to so. A grandma when the arthritis her friends are now just starting to deal with, she's dealt with for seventy years?

Let's fast forward a couple of months. Those questions are still there and we've settled into a new routine that involves a lot more doctor visits and blood draws that we would like. The methotrexate improved her symptoms some, but not as much as the doctors would have liked. Now we are in the process of trying to get some new medication approved, Humira. Yes, the same Humira you see on those drug ads on TV for gray haired men and women with arthritis. The bonus is that it's only a bi-weekly shot instead of weekly. McKenzie has been handling this all like a champ, but a girl can only receive so many injections before she just grows tired of it and starts hiding the syringes. The doctors are still hopeful that this will be the ticket for curing her symptoms. But my mommy heart breaks when I hear that she is on a field trip with her class at a museum, but she can't handle walking around that long and needs to find a bench to sit down and rest. She shouldn't have to feel like that. My mommy heart hurts when she tells me she still can't do skills at gymnastics because it simply hurts too much.

Along this journey she's had two sets of MRIs to help diagnose pain. We learned that in addition to her arthritis, she also has hip dysplasia. Seriously, the girl cannot catch a break. This is something that her pediatricians would have normally caught when she was a baby. Why they missed it we don't know. Her hip sockets are not deep enough to support the head of her femurs, and it's causing large cysts to develop. It's also another reason when she's never been able to do her center splits or straddles like her gymnast friends. She always thought she wasn't working hard enough, when in fact her anatomy has been her enemy for years. When we heard this new diagnosis my brain went into overdrive again; will she need surgery to repair this? Is this going to completely derail her gymnastics training? Will those cysts continue causing her grief? Will this be another thing she has to deal with for the rest of her life? Luckily our new doctor (we now know too many by name), an orthopedic specialist, seems pretty positive that we can treat this pain with physical therapy instead of surgery. While that it great news, it's another regular visit to Children's Hospital. I'm starting to lose track of the billing statements that are coming through my inbox. I can't remember which doctor, which procedure, which child, which facility. Every week I look at our calendar and see another visit to another doctor.

McKenzie has been a trooper with her new PT schedule. She says that she's noticed a difference in how her hips and back have been feeling. They don't hurt quite as much. But PT takes a long time and every now and then her joints just lock up and she can't move them. I'm hoping that the Humira plus the PT might spell relief for this girl. This part of her story just really makes my mommy heart hurt. And I don't know how long it's going to last.

Cozy in Keystone

The kids' favorite part of skiing each season is when we rent a condo in Keystone for a couple of nights and ski a couple of days back to back.  Some years it's been over Valentine's Day.  Some years it's been over Jeremy's birthday.  This year it was over spring break.  Our first day was pretty perfect.  It was snowy, but not terribly cold. Do you like the hack we discovered to help Daxton carry his skis?  That handle/leash system has multiple uses.

 

The kids have grown in confidence and we were able
to cruise most of the mountain.  

It was a bonus when when we didn't have any injuries after exploring the terrain park.  We all tackled the half pipe, and even though some of us looked more stylish than others, not one of us broke our arm so that is a win!  The boys accidentally stumbled onto a stair component and watching them get themselves unstuck was the funniest thing I saw all day.  They were split leg dragging themselves down the stairs.  It was a relief when they finally made it off.  

After our first ski day we made our way to the condo where we enjoyed a dip in the pool and hot tub, followed by a couple rounds of pinochle.  We thought things were set up perfectly for our second day of skiing.  Unfortunately I was woken up in the middle of the night by Cambrie crying in pain because she felt so sick.  Her stomach was hurting and she felt incredibly nauseous.  McKenzie wasn't feeling much better and the girls spent hours next to the toilet.  In the morning they weren't feeling much better, so we decided that they should stay and recover while Jeremy, my mom and I took the boys out.  

Having just the boys meant that it was a very different kind of ski day.  We spent all morning playing follow the leader.  It was so much fun.  We ended up cruising on runs we've never explored before.  I honestly don't know where we skied since it didn't really matter where we ended up.  

(This picture is actually from a previous trip this season: McKenzie was sick at home, and Cambrie was back in the car with a broken wrist from the previous run.  We have had a unique ski season.)

But lunch time Daxton was really tired and we needed to go back and check on the girls.  I must say, eating in a kitchen is a lot more convenient than trying to eat squished in a car.

Hey, they're actually eating something!

The girls weren't feeling ready yet to hit the slopes, so Daxton stayed and hung out with them while the adults and Kelton hit the slopes one last time.  I can honestly say that afternoon was one of the most fun times I've had skiing in years.  We were able to ski real adult runs.  Kelton is small enough, strong enough, and fearless enough to explore some black diamond tree runs with us.  We were able to find some real powder off of Santiago and we spent four runs there just blowing through the trees.  I could definitely tell that my legs have not had that kind of ski conditioning in a long time, and I was getting tired.  But I wasn't about to miss out on my first "adult" ski day in years.  

We did have a moment of excitement once getting off the lift.  Kelton jumped off too early and started sliding down the back side of the lift dismount platform.  I tried to reach out to grab him but missed.  My skis turned in such a way that they snagged him before he could slide down the mountain sideways, and because I was still partially on the lift, it hoisted both of us up and over the lip.  Once I knew we weren't sliding down the hill, I still had to plaster myself to the ground because there was a lift chair above me and I didn't want to get hit by it.  After it passed over head I started army crawling with split legs away from the lift so the chair behind us wouldn't run into us.  I have no idea how Kelton got away at that point.  When we finally pulled ourselves up and out of the way we all burst out laughing.  We looked ridiculous!  I'm sure we gave the chairs behind us some good entertainment.  Needless to say we proved ourselves more competent on our following lift rides!  

After a full afternoon of powder skiing, Kelton was absolutely beat.  We went back to the condo to find that the girls were improving and Daxton was still asleep.  Can anyone say another hot tub and sauna visit?  The pool complex was just in the building next door, but it was still a very cold jaunt in a towel!

 Despite the girls not feeling very well, it was a great few days up in the mountain.  The beauty of the area just couldn't be beat, and neither can nights spent playing pinochle, eating brownies, and watching family movies together.

Ski hair, don't care.

The view from our condo porch was awesome.  The ski was finally clear as we were checking out, so we needed to snap a picture before heading out.

Leprechaun mischief

Potsy's tricks are so different each year.  This year he rearranged a lot of the pictures on the walls.  

He stole all of the kids' shoes and hid them throughout the house.  

Unfortunately for Kelton, his blanket had some holes burned in it by the oven light!  Poor guy was not thrilled with that leprechaun mischief.  

The kids did however like the increase to their gold coin collection, and even weren't that disappointed when Potsy wiggled out of their leprechaun trap. Happy St. Patrick's Day!

Art tour of Denver

Here is the backstory of this next story.  A few years ago Bruce and Leesa came to the adult children and said they wanted to take each of their grandkids on a special trip.  The grandchild would be given a budget and plan the entire trip.  The budget is generous enough that the kids can go almost anywhere they want to go.  The idea behind it is that they gain some skills planning and executing a trip, as well as spending some special moments with their grandparents.  Twelve years old was proposed as the magic age, and Cambrie was going to be the chosen one to prepare the way for her younger cousins.  Unfortunately there have been some hurdles along the way.  At twelve years old we went to Dominican Republic and Bruce and Leesa had other big travel plans.  At thirteen, covid hit and everything shut down.  We have been watching and waiting for things to reopen, but at fourteen there were still no guarantees of success.  Cambrie had tentatively planned a trip to Spain over spring break, but it was just too stressful with too many variables and unknowns.  So she decided to rethink the experience and turn it into something she is really passionate about, art.  She planned an art tour of Denver for her and her grandparents.  Even though it wasn't exactly what Bruce and Leesa had in mind, it ultimately ended up being the right choice. 

Event number one was supposed to be a glass blowing class.  Cambrie has been excited about it for weeks...and then she broke her wrist snowboarding.  It is too difficult to manage the glass blowing tools with a wrist brace, so they had to reschedule that for next fall.  Their new first event was a dinner at the Melting Pot.  The food was delicious and from reports they all seriously over-ate, which is easy to do there.  

Saturday morning Cambrie arranged for tickets to an immersive Frida Kahlo exhibit.  They weren't able to take pictures inside of the event, but they said it was so cool to be in the room surrounded by her art and definitely worth going to.

For lunch afterwards Bruce and Leesa tried taking Cambrie to a bar!  Okay, that's not exactly how the story goes.  They were looking for Avanti but ended up across the street.  Once Cambrie had her ID checked and her hand marked to avoid and alcohol being passed to her, they realized their mistake and made their way across the street to where they had originally planned on eating.  

That night they went to Planks and Paint where they worked on a cornhole set together.  I think this is where expectations and perceptions really started to change.  Bruce and Leesa had one idea of what this entire trip was supposed to be, but Cambrie introduced them to her world.  Once they were there, they could finally feel free to open up and talk without feeling bound by how things were "supposed to be."  Their cornhole set turned out incredible, but the real win here was a great conversation with their granddaughter.  

The last day of their visit was Sunday.  Cambrie had everything ready to go for a Bob Ross painting day.  Unfortunately the white paint mysteriously disappeared and we had to change plans.  Cambrie introduced them to pour paint.  Each of them pour painted a masterpiece.  When they come back out for the glass blowing class in September, they'll be able to finish with their Bob Ross paintings and the three of them are really looking forward to it.  I would call that a successful grandparent/grandchild bonding weekend.

 

Back in the classroom

It's time.  I've been toying with the idea of going back to substitute teach for awhile now, and I even went through the background check process this summer.  When I realized that I had to submit a resume for my application I chickened out and didn't finish the process.  It's intimidating creating a resume when I haven't worked for twelve years!  I finally finished all the paperwork and training and am now an official employee of the district.  My first job was Daxton's kindergarten class.  I thought that the stakes were pretty low for kindergarten and I at least have a general idea of who some of the kids are.  I felt like the first part of the day went really well.  I was trying to remember all of my education and it was tough.  All of the tips and tricks I have for classroom management are definitely coated with dust and more than a little rusty.  It was a very cold day which meant we had indoor recess, which meant the kids were wild.  After lunch I had a kid building a spaceship out of a chairs, and when approached about it he started throwing the chairs around the room.  That was about the time the paras came to get him.  I had a kid pee in the bathroom.  And every time I turned around I had a kid who just knew better what was supposed to be going.  By the end of the day my throat was raw and I was losing my voice.  I was absolutely exhausted.  I wasn't terribly surprised because I need to adjust to a full day of work.  Come to find out I was actually getting sick and spent the next day napping, taking warm baths, and trying to talk as little as possible.  I don't believe it was entirely the kindergarteners' fault, but it was still rough!  Regardless of all of the chaos and repercussions, I still loved it.  It felt so good to be back in a classroom.  I am hoping to sub one or two days a week, and really get a feel for the teachers and their classrooms.  Kelton is begging me to teach his class next.  And even though my life seems crazy and too full as it is, this is just too tempting to pass up. I love it.

 

Ninjas

Me: Kelton, I need you to go do your chores.

Kelton: But I'm a ninja! Ninjas don't do chores.

Me: Haha! Are you kidding? Ninjas are tough because they have to do lots and lots of things they don't want to do. Especially things like chores.

Kelton (as he stomps upstairs): I wish you didn't know about ninjas...

(Don't be fooled by the smile in this picture...this was a completely different day.)

1st Grooming Visit

I've been waiting to take Moki to the groomer until I was more familiar with how his coat grows.  But when I realized that the little guy couldn't even see out through the fur by his eyes, it was time.  

Apparently he did great at the groomer.  But when I picked him up I didn't even recognize him! Who is this blond fluffy ball?