Sunday, December 27, 2015

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.

Monday, November 30, 2015

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 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.

Tuesday, October 13, 2015

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.

Sunday, September 6, 2015

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.

Sunday, August 16, 2015

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.

Sunday, July 26, 2015


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


Sunday, July 12, 2015

Real Tools Don't Talk.

Nate watching a new show called Handy Manny and then finding a big pile of scrap wood at grandma's house is a bad combination.  A couple of weeks back Nate discovered a show all about talking tools and building projects that lead to hilarity and moral lessons learned.  So imagine his pure joy when he discovered that grandma and grandpa had a recently torn up floor and plenty of spare wood.
Nate's plan:  build a secret hideout. 
It didn't take Nate very long to learn that building a fort wasn't as glamorous as that poser Handy Manny made it out to be.  Our tools didn't even talk once and the project mostly consisted of me cutting wood and Nate watching, wondering why his fort hadn't materialized yet.
It also didn't help that grandma's backyard was mysteriously transported to the surface of the sun that day.
A wheelchair makes for a great wheelbarrow replacement!

 I don't know if he was aiming for my fingers on purpose......
After an hour and half or so we had the wood cut and a frame made.  We haven't finished the walls or the roof yet but Nate has already spent some time in it.  And although Nate insisted we have a no girls allowed sign, he reassured us that it was only and affection and he would take it down any time any of his girl cousins were around.  

Nate's gotten to the age where he likes doing things for himself.  As you can imagine, that category is a little more limited than a kid who doesn't have SMARD but it's also a wonderful thing to see in him and we encourage it.

The other day at the park he was on top of a little structure that has shallow enough steps to allow him to clamber up them. Then suddenly, Nate was at the bottom of the slide.

The crazy kid climbed up to the top of the structure, turned himself around and pushed himself down.  He was so proud.  I love being his dad. Well, except from the hours of 1:00 AM - 4:00 AM last night.   Did not love it so much then.

Sunday, June 21, 2015

Germs, Babies and Students

Nate likes talking to things.  Anything really but he has 3 particular favorites: his "class", babies and germs. 
Right now talking to germs is his thing, to the point where Annie and I have maybe lost a little bit of our minds over it.  In the Nate talking to germs stage play, Nate plays himself and Annie or I (read: Annie) is plays the role of the germs.  Nate will ask them how they are doing and Annie has to respond as if she is a germ or the germ collective. 
The key here is that Nate NEVER tires of this routine.  When Annie does tire of it then he will ask her to get out a bunch of his toys.  He'll divide his toys in two parts.  One part will be the germs and the other will be the white blood cells and he'll have them duke it out.  I only ever get worried when the germs win. 
The more normal thing he loves is babies or as Nate likes to say "I love babies infinity".
And he does.
I love babies too but now anytime I see one starting to breath fast and I automatically start thinking SMARD.  Probably not healthy but also probably not the most unhealthy thing I do. Nate will have conversations with his cousin James or Liam, only they aren't in the room.  Nate will, thankfully, play both himself and the baby parts in this scenario.  Which is equally disconcerting as the germ routine but less work for us so...whatever.  Observe Nate as he passes a Sunday afternoon away just staring at his baby cousin Liam.
Here Nate insisted Liam join him and his cousin Callie as they colored and read books.

Nate had another cousin, baby James visit from out of town.  Let me tell you, nothing, NOTHING, excited Nate more than the idea that he could put Liam and James on a blanket together and watch them chat it up.  He was tired of the artificial thing - he wanted real babies really talking to each other and almost burst with excitement at this idea.  Sadly, he was about equally disappointed when they were finally placed together on a blanket and all they did was throw up and poop themselves.  Babies, ugh, get it together. 

Nevertheless, Nate still loved and loves every minute of hanging out with his baby cousins.  How could you not, they're cute times infinity.

Here is Nate gleefully imitating baby James in some sort of one-sided Simon Says.

Nate, pleased as punch (or in his case beige nutrient rich slurry) as he holds James.

Wednesday, June 10, 2015

Graduated Preschool - Next Step College

It happened.  It finally happened, the beginning of the end.  Nate has finally become an adult or at least it feels like he will be sometime next week.  How is he growing so fast?  Nathaniel graduated from preschool last week. 

Nate starts kindergarten in 2 months.  2!  As in, less then 2 1/2 but more than 1 1/2.  How on Earth can someone so little be expected to go to school for 5-6 hours a day?  It's nuts.  But that's what's going to happen, despite my hunger strike.  While I am being a bit dramatic with the whole Nate growing up too fast thing, things are changing in a big way at the end of the summer. 

Nate will spend more time at school than with me.  We're going to have to leave him with a nurse we've never met and entrust her with Nate's life.   He's also getting older and bigger and simple things are going to get much harder.  This feels like the beginning of an uncharted phase.  I find this to be frightening, more frightening then The Ring even.  And The Ring scared me so much I had to put Newsies on a continuous loop for 3 days until I could sleep again.

Nate had a great time in preschool though.  His first year was a bit rough.  He had trouble with the noise and chaos and never really took to interacting much with other kids.  It's hard to do when you can only sit and watch.

Thankfully, this year Nate became really engaged and had a lot fun....sometimes too much fun.  He takes after his Dad in that he is nearly perfect except for the tragic flaw of always needing everyone to hear what he is saying and not caring one whit for the educational convention of raising one's hand before doing so. 

While Tiny Tots may have had a rough start it had the perfect ending.  Nate received his diploma, took it home and opened it up.  I don't know what he was supposed to receive but what he ended up getting was a piece of paper that said the name "Kurt" over and over again.

Nate loves practical jokes and thought this was hilarious. For someone who calls himself the master of mischief, it was the perfect diploma and a perfect end to preschool.

Sunday, May 3, 2015

Getting Out

I'm going to let you all in on a secret.  Cabin fever can happen without even needing a cabin.  While Nate was sick we weren't able to leave the house much and with our apartment being small enough to make Thumbelina explode in claustrophobic rage, you can imagine how things were starting to feel for us.  

So we've been getting out as much as we can.  On top of Nate's list was the NASA Ames Research Center.  It had Nate so excited that he couldn't focus on any one thing.  We would roll him up to something he wanted to see and in seconds he would point his wrist over to something else and excitedly demand we go look at that now.

He loves the stars and space so I asked him if he wanted to be an astronomer.  He said no and told me what he wanted to be.  I asked him to tell me again.

However, just today he was saying he wanted to be a doctor.  A blood doctor specifically so that "if someone's CO2 is too high I can do a blood draw".  It's delightful and sobering that Nate knows about high CO2 levels and blood draws to test for that.

Over the last couple of weeks we:

Checked out the new handicap accessible park that just opened near us, Magical Bridge. As you might imagine, Nate loves it.  In the couple of weeks it's been open, Nate has been there at least 132 times.  The park is amazing and has so much more stuff for Nate to do and enjoy than a regular park.  The best part about it though, is probably how well it integrates the play between disabled and typical children.  It's a great park and a lot of fun.

He also found a new place to check out ducks, geese and Koi fish.  I don't think he loves seeing fish, ducks and geese but he loves seeing Annie's reaction to geese that get too friendly.  If you're wondering - her reaction is a mixture of terrified and spastic. 

Back to the farm near our house.  Any chance Nate gets, he chases peacocks.  It's been his thing for years.

His highlight this week was heading back to school.  He had to miss school for a month while he recovered but was so excited to get back.  The day went from 10 to 11 when the caterpillar cocoons the class had been tending finally opened up and a butterfly took its first flight right onto Nate. 

Nate felt like he was pretty important that day, maybe too important.  I should probably do something to knock that self esteem down a notch before he starts getting too uppity. For those of you who don't know please be aware that I am joking and not a terrible parent.  At least not on purpose.

The beach!  We have a love hate relationship with the beach.  Annie and I love it, Nate loves it but it hates us, so very much.  The beach is hard for us what with it being made of our mortal enemy, sand.  Thankfully, there are quite a few places around us that have nice pathways right on the beach that allow for Nate's wheelchair.  It's been a big hit so far and occasionally we'll unplug Nate and take him down to the water.  Exhausting but worth it. 

Can you find me and Nate?

Nate checking out the seals on Seal Rock through a 70-year-old telescope that cost us 50 cents. 

Beach near Half Moon Bay. Look at the face on Nate.  I want to say it's pure joy but it could also be him going over his plan for world domination.

I love going to the movies so my favorite day of the last few weeks was taking Nathaniel to his first movie.  I don't know if it's a SMARD thing or just Nate but he has some sensory issues and we'd put off taking him to the movies but he really wanted to go so we went.  He loved it. 

It's always great when Nate gets out and does something and gets that smile of pure excitement on his face.  It feels like a big win for us.  Now that he's seen Disney's Monkey Kingdom, next up, Furious 7.  Nate's a HUGE Vin Diesel fan.


Sunday, April 19, 2015

Nate's First Pet

A quick update on Nate's health: We've been home for the hospital for two weeks now and life is slowly getting back to normal.  Nate still has extra junk in his chest that we have to manage, but overall it's much better.  The swelling and pain in his extremities has improved.  We've been getting out of the house a bit more.  Things are headed in the right direction.  The biggest challenge now will be helping Nate to regain all the strength he lost from being sedentary for nearly four weeks.  He is significantly weaker now and it will take some hard work to get him there, but we think he can do it.
Since Nate has had such a hard time of it lately we decided it was time for him to get his first (and only) pet.  Last week, while heading to physical therapy a lead bug landed on Nate's knee.  He was out of his mind excited about it and pleaded with Annie to contain it.  Annie grabbed a plastic container and they brought him home.  Nate named him Buggie and they were fast friends.
Now you may think I'm kidding in saying that this was Nate's pet but I'm really not.  Nathaniel would take Buggie out at least once a day and play with him.  He learned to gently pick him up by his wings and remove him from the container.  Then he him.   
He had a lot of fun.  Maybe even too much fun considering it was a leaf bug that just sat there.


Although still experiencing some pain we thought Nate was up to attending the annual Sweatin For Sammy fundraiser.  Every year Nate's cousin Sammy has a fundraiser 10k for her benefit and this year he LOVED it.  He was not happy at all that we had to leave. He was really excited to get back in his power chair and use it for the very first time in the kid's run.
At first I thought maybe it was kind of cheating for him to use his power chair in the race but then we kind of leaned into and ended putting spikes on his wheels, Ben Hur style.  The other kids didn't stand a chance!

Uncle Colin psyched Nate up for the run before hand.  And then he was off.  Be sure to note the pure joy on this kids face.

If you tunr your speakers up and pay close attention at about 00:21 seconds you can here Nate say "It's so exciting".  The idea of Nate getting an adrenaline rush from this kid's race tickles me to no end.

Despite obviously coming in last place (we were afraid of what might happen to other children if we let him turn his speed up) Nate declared himself the victor, "I won" he yelled at the finish line.  I told him he actually came in last but he was in no mood to believe me, especially considering he had just received a shiny medal upon completing the race.
Should we be concerned that he strokes it all day and calls it his precious?
And if you remember a post from a few weeks back you'll remember that Nate likes to bring one of his classmates with him to places.  He calls them field trips.  That's why Iron Man tagged along.
So congrats to Jenny and everyone who works on Sweatin for Sammy, it was our favorite year and Nate had a blast.
It's hard to say exactly what Nate's favorite part of the day was (actually it was clearly the race and winning a medal) but one of the contenders was the arm painting he received.  Normally Nate isn't interested in face painting since he doesn't like the sensation of it on his skin but he really wanted something painted on his arm from the face painters.
Nate being Nate, he wanted a blue goose on his arm.......?  He really liked his painted goose.  In fact this blog post could just as easily be called Nate's first TWO pets.  He even named it.  The goose's name is Pancake.  That's right, he chose a blue goose and named it Pancake.  I'm not sure who is raising this kid but there are clearly some red flags.