Happy Birthday Nate, Sorry Your Party Was So Lame.

On April 1st Nate turned 5!  It wasn't quite the day we were hoping for.  Nate picked up a cold at school and by day 5 things were pretty grim.  When Nathaniel gets sick, things get kind of crazy.  We have a machine that monitors his vitals and I cannot tell you how scary it is to put him to bed at night with his oxygen numbers dropping and his heart rate rising.  For days Annie and I were up all night (literally) and living with cold ice in our stomachs and what felt like an elephant on our chests.

Every 10 minutes or so we had to go into his room to clear out his trach, reposition him, trouble shoot some pain he had or just comfort him while he worked to breath. It's been relentless.

It scares me when Nate gets really sick.  He looks like he can barely breath and although we have a ton of experience dealing with things like this, we never know how much his little body can take.  I go to work wondering when I'll a get the call from Annie that she called 911.  On his birthday, things got really bad and Annie took him to the ER.  The next morning he was gasping for air (this just shouldn't happen to a ventilated kid) but we kept making adjustments to his vent settings and managed to get him comfortable again.

By Day 2 his lungs were expanding again after some significant collapse.  Thankfully, after 3 days, Nate was cleared to go home but coming home from the hospital is in many ways worse than being in the hospital.  He is still getting four breathing treatments a day and needs lots of suctioning, even a week later, and just isn't feeling great.

Nate has SMARD but because we live with it everyday, we forget how tenuous his hold on life is.  Nathaniel is on life support 24/7.  He lives on an edge and even a cold can do serious damage, or even kill him.  When he gets a bad cold - nights become stressful and sleepless and Annie and I always end up sick to boot.  By the end of even a mild cold we are exhausted, sick and our nerves are frayed.  In the hospital we at least know he's safe and have wonderful help that allows us to get more sleep than usual. 

In fact, Nate doesn't even mind the hospital after the doctors are done prodding him because he gets a parade of people coming in to play with him.  Plus, he was terrified of having his IV removed.  He would have stayed forever so long as we kept the IV in.  Seriously, I'm not evening making that up a little.  Observe:

Nate finally got around to celebrating his birthday and mostly enjoyed it.  He was excited about the decorations, the scavenger hunt and the "space" cake Annie made.  Unfortunately over the last 4 or 5 days he developed some sort of pain in his hands and feet.  Any time we move his arms or legs he cries out in pain and says his feet or hands hurt.  We can barely move him without it causing him a great deal of pain.  On top of this he's lost much of his strength.  He can't lift his arms up above his shoulder height anymore and he has trouble playing with his toys.  We don't know why it's happening. 

As issues pile on and sleepless night after sleepless night add up we feel like we're cracking. It's relentless and brutal on your morale and emotional state.  I honestly feel like at any moment I could just snap and start digging holes in the back yard laughing hysterically. 

So even though we're home and Nate isn't in immediate danger, we're back to sleepless nights as he suffers from these new pains in his limbs and continues to recover from this horrible virus. 

But he is delightful and honestly, the bravest person I know.  Captain America is a close second though.

Why am I writing a blog post about this?  We don't feel like victims.  We know we have some great things going for us but I think sometimes it's just good for others to know what it's like on the inside of a family with a disabled member.  We're exhausted and worried but we love Nathaniel.  We love Nate and we love him exactly as he is.  Nate having SMARD has changed our lives for the better.  As with all great things though, you have to earn it. 



 

 

We're happy to earn him.

Nate's Stuffed Class

Nate (I'm guessing like most 4/5 year olds) loves to question and learn.  He loves to learn so much that his favorite thing to do for weeks now has been to hold classes at home with his friends.  Meet Nate's class.

Nate holds class at least once a day, often times more.  He teaches them about the things he is learning about and interested in.  Sometimes it's about space, gravity, planets and such while other times it's about construction, dinosaurs or, his favorite, survival. 

Don't let the name of the course Survival fool you though.  It doesn't involved an infil into a lonely desert where Nate teaches the class how to survive on bugs and boiled urine.  Survival to Nate means how your body maintains itself.  He teaches them about your lungs, eyes, blood and waste system.  It's not uncommon for Nathaniel to need to go to the bathroom during class and announce to everyone, "Okay class, I'm going to get rid of my waste now", or something to that effect.

He'll often quiz them as well and makes sure they raise their hands first since he has a problem with that himself in preschool.  He asks them about the material and then he or Annie will come up with answers for them.

The following is a teaching moment Nate had with his class.

Nathaniel - "Okay class, what is your favorite sound?"

Bunny: "Crunching on a carrot."
Iron Man: "My favorite song."
Wolverine "My claws going into bad guys."

...We don't cross Nate anymore.

Sometimes he'll have Annie teach the class and he'll be a student as well.  Because what well adjusted 4 year-old doesn't want to hold school in their free time?

Today he had Annie teach and she popped the question;

"How do we know the Big Bang happened?"

Nate: "Astronomers have several clues, such as a faint echo in space and the fact that the universe is still expanding."

He also loves to take the class on field trips.  He gets to bring one member of his class with him when we leave the house.  Originally Nate was not content with one and wanted the whole class to come.  Since the beginning there has been a ban on taking the ENTIRE class on field trips and that never sat well with Nate so Annie to the above picture of his class and they always bring that with him. 

As they move through a store Nate will explain things to whichever class member is lucky enough to be riding shotgun. 

This all comes from 2 things.

1.  Nate LOVES to learn.  He loves facts and they stay with him. 

2. The way Nate plays is very different then other kids.  His uncle Chris once commented that something he loves about Nate is that he can be entertained with conversation. Because of SMARD Nate has developed different ways to interact with the world and found a deeper interest in learning and conversing.  Maybe he would have been that way regardless.  Who knows.

That's Nate holding an earthworm.  He likes to play "Bugclub" and go out in the backyard and look for bugs.  The other day he dug up a worm and then picked it up.  That's a big change in behavior for the kid that is so texture sensitive he used to freak out if he got dirt on his hands. 

Even though Nate cannot run through the grass and explore the hills, he is an adventurer at heart and loves to explore and learn in the ways that he can.  He is constantly trying new things, which is a big change from his attitude a year ago, and always looking to know how things around him work.

Oh yeah, Nate had wacky Wednesday at school a couple of weeks back so he wanted his hair crazy and a tie on.  We obliged and then took him to school.  Turns out it was Friday and Wacky Wednesday was, as you may have guessed, on the following Wednesday.  Nate didn't care, he loved his cool hair and wacky tie all the same.

What just happened!?!

It's been awhile since we blogged last because the holidays kicked our teeth in.  I, of course, mean that in the most literally metaphorical way possible.  It took us until the end of January to fully recover and ever since then we've spent any free time lying on the floor trying to conserve as much energy as possible.

Here's a brief timeline of the holiday events that destroyed us:

• Week before Thanksgiving - Annie gets terrible cold
• Week of Thanksgiving  - Nate and I get minor colds - Annie still has terrible cold
• First week of December - Annie still has terrible cold
• Second week of December - Nate gets another minor cold - Annie has terrible cold causing terrible headaches.
• December 13th - Annie goes to ER.  Yay! She has ear and sinus infections.
• Dec 15 - I get really bad cold
• Dec 16-ish - Nate get his brand new power wheelchair!
• Dec 20 - Nate gets same really bad cold - all hope of sleep for next few weeks is lost
• Dec 24 - Annie gets another really bad cold
• Dec 25 - Nate has horrible crash in his new power wheelchair.  The chair flips over and breaks his vent and suction.  New chair is broken.
• Dec 26 - Nate's cold gets much worse and we spend the day in the emergency room
• First week of January - Nate and Annie's cold remain terrible
• Second week of January - Annie goes to ER again - has another ear and sinus infection
• Third week of January - Everyone much better.
• End of January - Nate's wheelchair is finally fixed.

I know that it looks really bad when it's all written out but it was actually really, really terrible...like so much worse than it looks just written out.

Nate spent a lot of time recovering.  His favorite? 
Laying on the couch and watching HTTYD2

But there were some wonderful things that did happen.  Nate and I got a lot of great time together, mostly watching How to Train Your Dragon 2 (which he had just gotten for Christmas). 

As bad as it was on December 26th, after having spent the day in the ER - it was wonderful to lay on the couch with Nate and watch the movie together.  Nathaniel's powerchair is another great thing that happened.






He loved it the minute he got in it and even though the crash spooked us all, Nate was ready to jump back on it when it was repaired and was actually more confident and competent after the crash than before.

We got to spend time with family and even tried to wrangle all the Green cousins together for a Christmas photo...with mixed results.  Micah just wanted to get off the couch and play.  You could take 20 pictures of Sammy and Nate and get a different look each time and Callie - well - Callie was very patient.

Nate Hanging his Grammy's house stocking.

Gingerbread house and laser eyes

Oh, and hands down Nate's favorite part of the whole Christmas break was his new cousin Liam.  I know he doesn't look it in this picture but Nate is a Liam-loving machine.  One night Nate just sat in front of Liam touching any part of Liam he could and staring at him.  And then he would immediately start reminiscing about whatever Liam just did.

- Liam Sneezes- Nate loves it.
Then for the rest of the night;
Nate - "Dad, remember when Liam sneezed"

The crash was pretty horrendous but the fact that Nate came out of it with nothing more than a bruise on his head was a reminder to all three of us that God is taking care of us.  He may not be doing it in the way we want but it's in the way that makes us better and helps keep us sane.  Although sometimes we are very close to losing that battle.

Nate loves his chair and although it comes with new anxiety and takes up the last bit of space we had in our apartment, it's changing his life.  Nate can go where he wants, discover, explore, be away from his parents, chase animals or, when it's a dog, run from animals.  It's completely changed his approach to the world.

The First Day of Christmas Holiday - or to others, Thanksgiving

 

 

Apart from the day off, Thanksgiving to me is mostly just Thursday.  I say mostly because family comes to visit and that always livens things up.  And as far as Nathaniel is concerned - more uncles (Analisa and Alex weren't with us this year) in town means more people to play with him.

 

Thanksgiving for Nate is almost entirely academic.  He seems baffled by a holiday centered around something as mundane and old fashioned as eating but he loves hanging with family.

 

After Thanksgiving dinner, Nate, Grandpa and Micah retired to the garage to do some light carpentry.  Nate thought this was absolutely fantastic.  Not only does he love spending time with his Grandpas but he is weirdly into home construction right now.  The kid can't get enough of home improvement shows.  His personal favorite - Rehab Addict.  He loves to scoot around people's houses looking for things to "rehab addict".  Or in human words, repair.  Although not everyone is happy with him pointing out all the flaws in their home.

After some work in the garage nailing tacks into a piece of wood, Nate then spent some quality time watching Youtube videos in the hallway with some uncles.  I'm not sure why this happened in the hallway but it did. 

 

At one point uncle Bryan tried to stop a video and Nate gently but firmly put his hand on Bryan's forearm, letting him know that, yes he could turn the video off but he would have his eyes clawed out.

 

 Almost as exciting as the influx of new bodies to push him around and play with him was our visit to the Christmas party at the farm this weekend.    He learned what mistletoe is and that it was the most fantastic idea.  He made all of us stand under it multiple times and in every combination possible.

 

 

 The highlight, however, was  meeting the big man himself.  No not this big man:

 

 

 

This big man.  Santa Claus - or in the old-timey case at the farm, Father Christmas.  Nate was delighted.  He told Santa everything he wanted, a Lego mini Millennium Falcon.  Santa then asked Nate if he was aware that a new Star Wars movie was coming out.  Of course he does Santa, of course he does.

 

 

Primary Talk

Nate gave his first talk in primary on Sunday and he nailed it. Sort of. He remembered the whole thing but he mumbled so bad no one could understand him. But, for a first stab at public speaking, we are pretty darn proud of him.

Here is the transcript for those of you who don't speak 4-year-old:

The gospel helps me to be strong. I have SMARD, and that means my muscles aren't very strong. But Heavenly Father has a plan for me. He doesn't think I need strong muscles to do my mission on earth. He helps me have a strong spirit to do hard things. Going to primary and having faith in Heavenly Father helps my spirit to grow strong.

 

 

Also, it is not that easy to get him to do this talk anymore. It was outtake city over here.

This is Halloween

 

Halloween happened this year and Nate was super into it.  Last year he liked dressing up but was largely indifferent to everything else involved with Halloween. Everything except the barking dogs that seemed to be waiting behind every door he trick-or-treated at.  He didn't like that at all.

 

This year, from the get-go he was super into:

 

1. His costume.

2. Candy.

 

As odd as that seems Nate was all about getting candy this year.  Especially once we gave him the mandate to find our favorite candies. He was like a candy blood hound.

 

Halloween involved multiple activities this year.  The first was the ward trunk or treat.  We decorated the inside of our van and deployed the ramp like last year.  This way kids could walk into our haunted van.  Nathaniel was not satisfied until we visited every car.  Which surprised me since he doesn't even eat the candy....but also meant that the parent candy tax was at a full 100%. 

Halloween day brought trick-or-treating downtown Los Altos.  Annie and Nate were lucky enough to find themselves downtown the one time it rained this year.  Nate loved it....don't know about Annie.

 

 

Nate's pumpkins this year were Curious George and triangle face.

 

 

And the costume.  Nate wanted to wear his Luke Skywalker costume all the time.  He was out of his mind excited about being Luke.  He was the only Luke in a sea of Anakins and Obi Wans. 

 

The best thing about this picture is Nate would not look at the camera.  So every time we told Nate to look at the camera he would turn his head to the side and glance over at us.  It must of have been some sort of Jedi mind trick.

 

 

This year's Green family theme was Luke Skywalker visits Hoth and meets the cast of Frozen.

 

At first, trick-or-treating was a standard affair with a tired Dad pushing a wheelchair up and down steps and driveways but then uncle Chris took over and the running between houses seemed to elate Nate to no end.

He did run into a few of his arch-nemesis -- dogs.  He used his lightsaber to fight them off and is convinced that at one point, he actually used the force on one of the dogs which had reared up and stepped back at the exact moment Nate extended his hand to force push it.

Ouch.  Careful Luke!  Holding a lightsaber anywhere but the hilt could cost you a hand!

 

Nathaniel was super excited about Halloween this year and had fun doing nearly everything involved with the holiday.  However, I think the best part about the entire thing, is that when Nate decided he wanted to be Luke and we started putting together the costume, he was genuinely convinced that people would actually mistake him for the real Luke Skywalker.

As you can imagine, this made Nate giddy with the prospect of tricking some people and pulling some Halloween mischief.

Coming of Age

There comes a time in every little boy's life when he finally becomes aware.  For Nate, it was about 2 weeks ago and he is obsessed.  He can't get enough and will watch it whenever we let him.

For those of you who can't pick out what movie is Nate glued to based on a single frame, it's Star Wars Empire Strikes Back.  He loves Star Wars and consumes it in every form he can (that we'll allow); books, toys, movies, shows. 

Nate and I spent a Saturday afternoon in my parents' garage digging up old Star Wars toys that my younger brothers and I had when we were younger, including some of the originals from '77.  To Nate's credit, he vastly prefers the 1977 Chewbacca to the absurdly beefed out 1996 Chewbacca.