You Can Have Two Things

Christmas Day was a complete joy.  There is nothing better then the delighted exclamation of a little boy who just found out that Santa delivered on THE present he wanted more than anything in the world.

Unfortunately, in order to get that one thing, Nate apparently made a deal with a gypsy witch who then cursed him another disease. 

The day after Christmas Nate started having stomach issues.  I won't get into details because the details are horrifying but let's just say his stool was abnormal and accompanied by blood, a lot of blood.  At one point after going to the bathroom, Nate looked in the potty and said, "Well, they don't make 'em like they used to".

We went back and forth with the doctors.  The usual stuff.  We tell them our child is suffering something and they think we are just overacting parents until Nate becomes vampirically pale (not the sexy shiny kind) and doctors realize he has lost so much blood that he needs a transfusion.

So that's what happened.  Eventually Nate had to go into the O.R. for an endoscopy and a colonoscopy.  He didn't mind the colonoscopy since it now gives him something to talk about with the elderly people he meets. 

After the procedures they gave him a blood transfusion since he was in pretty bad shape.  Seriously, the kid made Gollum look tan.

Nate going into the O.R. or coming out of the O.R. is a special kind of Nate.  Going in, he gets some meds to relax him and he gets hilarious.  You could give him a bag of Doritos and set him in front of a Seth Rogen movie and he'd be good.

Coming out of surgery is the opposite.  He's crabby and completely irrational.  Sometimes hilariously so.  Like this time, when he was coming down off the anesthesia he insisted the doctors couldn't have put a camera down his throat since that would mean they would have cut a hole "all the way around his neck".  In other words, he didn't believe the procedure was possible because it would have required chopping his head off.  He's quiet but it's in the video below.

Once the doctors had taken a good look at his insides they were able to confidently tell us that Nate has Ulcerative Colitis.  I know what you're thinking, but doesn't he already have SMARD?  Apparently you can have two things.

There are no rules in life and he has what he has.  So far, we don't know how this will impact his life.  He's been on steroids to reduce the inflammation and heal his colon but it's not a long term solution.  Over the coming weeks we'll see if the most benign of the medications will work.  If not, we start getting into less pleasant methods.  We still know very little.

The other day Nate started crying during school.  The kids were measuring their feet and Nate knows that his feet are abnormally small because of SMARD.  He began to cry and say he didn't want SMARD anymore.  Sometimes, it just feels like too much.  I KNOW that he can have any number of things but it FEELS like SMARD was enough.  The great thing about Nate though, he is resilient.  Nate's wonderful nurse talked him off that emotional ledge and he went back to his jolly, crazy self.

He spent today making Valentine's day cards for his "class", the group of toys he teaches at home, and teaching them about space.  No not the space you're thinking of, this one:

 Keep being you, Nate.

Thankful for....

This was the song Nate's kindergarten class learned and performed for Thanksgiving.  I know the video is one holiday behind but I think it's more appropriate now than during Thanksgiving.

I can't tell which hand motion is my favorite, the New York Statue of Liberty or the writhing hands Gulf Stream waters.

For the first time ever, in his 5 years of life, Nathaniel was HEALTHY for Christmas. Last year was a near worst case scenario for what could happen on Christmas but this year was pretty close to the best case scenario.

We worked SO hard to keep Nate healthy during the lead up to Christmas.  We were desperate to have at least one Christmas that Nate, and us, could enjoy without the specter of sickness looming over everything, sapping our emotional reserves and keep us up all night for weeks.

This year, it happened.  Nate promptly fell ill the day after Christmas with some sort of stomach bug because #life but for the first time in his life, he was healthy on Christmas and Christmas Eve and it was wonderful.

So for that, we are happy and thankful. 

More on Christmas next week.

Halloween and G Tubes

 

Halloween happened about a month ago. Nate was mostly into it. Especially the part where he got to lead the costume parade. He took the job very seriously.

 

 

 

 

 

Nate has a g-tube that allows us to feed him directly into his stomach. It’s particularly useful at dinner parties when we‘ve been served food we don’t like and there is not a dog available under the table. I can just throw it in a syringe and pump it into Nate under the table with our hosts none the wiser.

The downside of the g-tube though is that what goes in also goes out. We feed him by attaching a small, clear plastic tube to the g-tube in his stomach. He now has an open line from his stomach to the outside. The only thing that keeps what’s in his stomach from having a playdate with everything else outside of his stomach, i.e. the carpet, is a plastic clamp on the tube.

What happens when you forget to lock the clamp you ask? Great question! Everything that is in his stomach has a sudden urge to go Mongolian Horde and rush forth into the wider world.

 

 

 

His g-tube is kept securely in place but it can be yanked out and it has been yanked out accidentally when he first had it put in. Since then, it hasn’t been a problem...until this last Sunday, and oh boy.

Nate was on his scooter board outside with his cousins when I suddenly heard him yelling for help. I look over to see food all over his stomach. After feeding him I had forgotten to close the clamp and his last meal had spilled out on his shirt. Then I remembered I hadn’t been feeding him. In fact, he didn’t even have the feeding tube attached to his g-tube. So where was all this…..uh oh. Then I noticed that while Nate was sitting up, his g-tube was laying on the floor. For those of you keeping track, the floor is not Nate’s stomach and his g-tube should most definitely not be there.

Then I noticed HOW MUCH food there was everywhere. And it was everywhere. It covered his entire shirt was going down his pants and was all over the floor.

I rushed over to him and lifted up his shirt. There, on his stomach, was a hole that was supposed to have a g-tube in it.  A device that was supposed to be keeping his stomach contents where they were supposed to be.  Instead there was a hole with food spurting out of it....like a geyser. My first thought was to lay him on his back and see how high the fluids would shoot into the air. I quickly determined that this would be fun but less than helpful in cleaning up the mess.

Thankfully, replacing a g-tube is easy enough, doesn’t involve any pain for Nate and I had great help from my family. Nate wasn't bothered at all.  I worry that situations like this will embarrass him, and maybe one day they will.  But not this time.  He just kept asking when I’d be done so he could go back to playing. Stay five forever Nate. 

It’s heartening and sobering when you realize that depositing a plastic feeding device into a hole in your 5 year-old’s stomach is one of the easiest emergencies you have to deal with.

 

 

Also, more Halloween with Nate and his Green cousins:

I think Nate is pretending to be a T-Rex astronaut in this photo.

Goodbye My Classmates, Goodbye My Friends

Nate has had a love hate relationship with kindergarten.  Sorry, I misspoke, I meant he hates going to kindergarten. 

It's all very odd considering he actually likes his teacher and has friends and enjoys many of the things he does there.  It mostly stems from the fact that the things they learn are not that stimulating to him at all and they often take the form of a work sheet.  Why yes, Nate cannot do work sheets.  How astute of you to notice. This means that when he does one of the many work sheets he has to do - it's just him sitting there telling Annie what to do.  Not very engaging for a 5 year old.

Oh - you noticed that I said Annie and not "Nate's nurse".  You are a studious reader.  Nate's nurse bailed a week ago with almost no notice.  This leaves Annie back in the saddle.  Anyway, back to kindergarten.  Nate does enjoy many aspects of kindergarten but he gets very bored and it's made him more anxious than usual.

Today he was debating the virtues of never going to kindergarten ever again when Annie decided to just go with it and told Nate that he didn't have to go anymore.

Nate LIKED this idea, so he told Annie that he should write a letter to his teacher, Mrs Fox.  Yep, that's right, our 5 year-old wrote a resignation letter to kindergarten.

He dictated what he wanted it to say.  He was leaving kindergarten effective immediately.  In his words, he was not gonna be there anymore - starting tomorrow (Wednesday). What Nate had forgotten though, was that there was a field trip to the fire station on Thursday.  So some words were crossed out and some edits made.  Read below:

If you couldn't read the photo of the handwriting it says:

Dear Mrs. Fox

I know you really love me to come to your classroom but I'm not gonna be there anymore. (upon realizing there was a field trip on Thursday) I'm gonna be there until Thursday.  After Thursday I'm not gonna be there anymore. 

From Nate

Please show the kids this letter  (didn't want to leave his friends wondering what happened to him #thinkingofothers)


This kid.

Leopard To His Coooore!

So how did Nate's first couple of weeks at kindergarten go?  You tell me:

Sorry, wrong pictures.  This was Nate's first day at the New Republic training academy. Sorry for that embarrassing mistake. To make it up for you here's a video of Nate singing his school song:

One day Annie and I just heard him singing this. 

It was a rocky start.  We had to spend a lot of time on the phone and in conversations trying to get things done that were supposed to have been ready by the time Nate started.  Everything from him having no place to go to the bathroom to the doctor never sending over his prescriptions and orders - which prevents his nurse from being able to do anything but watch.

On top of that, Nate hated it.  He's come around more now but I think he still gets bored a lot.  But to be fair it is school.  We have a great nurse though and while Nate doesn't love school, I don't think he dreads it like he did a week ago and Annie and I have gotten to the point where we don't feel panicky all day.  And if you haven't noticed - feeling panicky all day wrecks your intestines.

For the first time EVER, Nate is out of the care of a family member.  It's scary but hopefully good for him.  So far, everything is going well enough.

Spinning the Earth Backwards

 

Summer is over starting tomorrow.  Nate finally starts kindergarten.  I don't want to sound overly dramatic, but this is suboptimal.  We tend to think that after years of raising Nate and managing all his care that we've got it down but as he gets older, completely new challenges start popping up.  It's pretty much the story of every child/parent relationship ever but there is an extra dimension added for us. 

 

What we are most NOT looking forward to is:

 

1. Trusting a nurse we don't know to care for our child at least somewhat like we do.

2. Annie is going back to kindergarten.

 

 

 

I don't remember kindergarten at all but if I did I suspect I would feel about it the way I feel about all school.  And there is no point in telling you what I think about my schooling because once I edit out the curse words it doesn't really make a full sentence anymore.  So I don't envy Annie in this.

She will have to attend kindergarten again.  And not in the funny Billy Madison way.  She'll have to go long enough for us to feel comfortable that the nurse can handle Nate and understand his particular needs and rhythms.  Also, why on Earth does rhythms have 2 "H"s in it?  What does it have to prove.

Anyway, despite my best efforts (which included making Nate take baths in Olay's anti-aging cream.  I'm beginning to suspect it doesn't actually do what it says) Nate has gotten older and life moves on.  I worry not only about kindergarten but his career, his mission, college, even chores. 

What Saturday chores can you make someone do who can barely move themselves? We tried tying rags soaked in Windex to his knees and letting him scoot around but he kept complaining about "rashes".  Millennials am I right?


Annie started taking him down to his new school and let him zoom around.    He drove around the map of the U.S. pointing out all of the "battles".  I don't know what that means and it's possible neither does he.

This is the constant conflict in Nate's life.  That stark juxtaposition between the completely normal things he can do with the completely abnormal life he will have to live.  He gets to go to kindergarten but he has a nurse there all the time and sometimes even his mom.

He can read and even spell but he can't write or even type.  He loves to play but can barely lift toys and playing on playgrounds with the other kids isn't an option. 

 

We're very excited that he can go to school, we know not every kid gets that chance and we are hoping it all works out.  Like most things there will be problems we will have to figure out but we feel lucky that Nate has had the life that he has had.  He tells us he's nervous but any time he gets to look in his new classroom or visit the school he gets pretty excited. 

 

Besides, he has a pretty good life so far.  I mean, how many 5 year olds get to go to 2 different aquariums in 1 summer.

 

Look at this kid.  He's either testing the acoustics in the shark tunnel (possible!) or he is really enjoying it.  Personally, I like to think it's both.

NATE THE CONTRARY

If you were curious about who wins the "Most Incredible Mom Award" then I can answer that. It's Annie.  She sealed the win today when she put Nate's trach back into his neck while standing hunched over in our van on the freeway.  Somehow Nate's trach popped out while we were heading to my parent's house and as you can imagine, the situation needed to be handled fairly quickly. 

 

 

And yes, I was pulling over to the shoulder but she got to work right away and was done by the time I stopped the car. 

 

 

 

This last week we spent some time in Utah.  I was going to say we were on vacation in Utah but vacation felt like it didn't convey the sense of exhaustion and manual labor that was our permanent companion.  Can you really have a vacation with a 5 year-old?  I would submit that you cannot.  That doesn't mean it wasn't a great time though.

 

For example, we had a really great time up at Snowbird.  We were able to participate with a charity called Wasatch Adaptive Sports which helps kids like Nate have a day of fun activities in the mountains.  Nate was able to ride a sled, go on a mountain tram, hike a little and even do some fishing.

 

The most delightful thing about 5 year-olds you ask?  That's easy, it's their sense of humor which consists of doing the opposite of whatever you tell them and thinking it's the funniest thing ever.  For example, asking Nate to look at the camera for a picture.

 

 

Hey Nate, it's only funny when grown men do this to their wives. 

 

 

We did some hiking first.  Or at least Annie and I did.  I don't know what the heck Nate was doing.  Maybe he saw a bear?

 

 

No big deal, just two cool dudes taking a walk.



 

 

"Hey Nate, look at the camera.  Very funny, now stop closing your eyes and look at the camera. Nate!  Open your eyes and look at the camera buddy.  LOOK AT THE CAMERA OR SO HELP ME I WILL LEAVE YOU AT THE TOP OF THIS MOUNTAIN!!!"

 

Next up was Nate's second favorite activity.  The Alpine Slide.  He was nervous at first but Nate is an adrenaline junky at heart and we knew he would love it.  You are able to control the sled with a throttle.  I asked Nate to tell me when to go faster or slower.  Every word out of his mouth was "faster!".

 

 

 

Then we got to go on a sled rollercoaster thing.  Nate was not very patient on the way up to the top of the hill.  He saw someone else (roughly were we are in this picture below) hit the part where you finally start going down and picking up speed and his comment was, "He's having fun, let's go where he's going."  We did, and it was fun.

 

 

Nate on the tram.  Every time we hit one of the tram towers it would speed up and Nate would melt into a pile of glee.

 

 

Finally it was on to fishing.  Nate loved, LOVED, the Alpine Slide but when fishing came around, he found his true love.  After having the pole in the water for about 2 minutes Nate had caught his first fish.  I can't tell you how excited he was.  It was hands down his favorite activity.  I'm glad he likes fishing because it's something he can do since it only requires sitting on the shore for hours holding a pole.  If a fish ever took his bait he would lose the pole but my experience is that fishing is a government scam to sell licenses since I've never actually caught anything. In fact, I don't think fish even exists in the wild.

 

This "fishing pond" for example is loaded with fish that they TRUCK IN every spring.  We could have just as easily caught a fish at Walmart.

 

 

But the bottom line is, Nate had a blast.

 

 Until the fish got too close.  When the fish wasn't moving he was fascinating but as soon as it starting thrashing 2 feet from his face...he wasn't so sure he liked the up close and personal aspect of catching the fish.

 

 

 

 

 He did however want to sit by that pond all day with his pole in the water.

 

It was great but exhausting.  We love doing things like this but I wonder how much longer we will be able to.  Most of the things we did required me to be able to man-handle Nate and the 3 bags of equipment that always have to accompany him.  He's getting bigger and heavier and I hope that we can keep finding ways to keep out in the world and experiencing these things. 

 

This was a lot of fun and we are so grateful that organizations like this are out there. It does a lot to help kids like Nate to do things they wouldn't otherwise be able to do.  Not only does this organization provide the basic activities that we had fun with but they help kids like Nate do things like biking and even skiing.  I hope we will always be able to keep Nate active and involved in the world around him.

 

Wasatch Adaptive Sports is worth checking out http://wasatchadaptivesports.org/