Sunday, August 21, 2016

Something in the blood

The Olympics officially ended today and apparently I won the Bronze medal in the marathon.



There's something about the two weeks during the Olympics that gets into the blood of the Green family. It caused me to start a 5 year Junior Olympic stint in Gymnastics. It caused my oldest brother to host an impromptu Olympics in our grandparents backyard that ended in a rather fantastic magic trick: turning one of his femur bones into two. And now it seems like it's gotten into Nate as well.

After watching volleyball he wanted me and Annie to setup a volleyball court on our rug so he could play. For a kid who can barely lift the weight of his own arms, it was an ambitious idea. But we all loved the idea so Annie came up with a way for them to play. It's rug Volleyball and Nate was the best player in the competition.


He also made his toys compete in various Olympic events and set up a shooting event between me, him and Annie with a Nerf gun and some toys.

Ever since Nate lost the majority of his arm strength back in May, he's defaulted to avoiding anything physical, including playing with toys. It's been a bit heart breaking, so seeing him want to get back into physical activity has been fantastic.

And for those of you who don't know what the Olympics are and also want to know what Nate's favorite events are, you are in luck!


Nate also started first grade this last week. As always, we took a first day of school pic:




I didn't take this picture and I wasn't there so I refuse to be held responsible for whatever he is doing in it. Last year at this time we were nervous about Nate starting kindergarten. We didn't know how he would handle hours of sitting in school, how we would make it work, if/when we would have a nurse, who would the nurse be, etc...

Turns out while school wasn't a disaster, Nate shared my approach to schooling, dying for it to be over. Even on my worst days at work I still think to myself, at least I'm not in school.

Having SMARD added to his difficulties with school but I don't that was all of it. Thankfully, this year has started MUCH better. 

In fact he was very excited the first day.  Some might say, too excited. 


After a few outbursts like the one in the video Nate tried to calm himself down, saying to Annie:

Nate: Okay Nate, calm down.
Annie: It's okay to be excited, Nate.
Nate: I just don't want to disturb my classmates. 

This year has had a very different start. Nate already has a great nurse that he knows and trusts, he has most of his school equipment squared away, and he has started taking his power chair to school. A big difference for Nate. 

While Nate still doesn't love school, and likely never will he doesn't hate it and even enjoys parts of it this year. Here's hoping!

Sunday, July 31, 2016

Assorted Musings

With summer coming to an end I think it would be healthy for all of us to take a look back at the "B" sides of Nate's summer. 

I don't think a day goes by where I don't receive an email from someone saying "Hi Scott.  I love the blog, it's the only thing that keeps me going in the morning, I'm super rich, here's a down payment for a home. I'm also writing because I would like to know more about the random things that have happened to Nate over the course of the summer." 

Now, granted, I've never actually received an email like the one above, but I know many of you are dying to send one just like it.  So to those people I say; I will accept your gracious offer of a down payment and here are some of the random things that happened to Nate over the summer. 

ALPHABET ROCKERS



A week or so after school was out Nate went to his first rock concert. During the school year a kids singing group called the Alphabet Rockers came and sang at an assembly. Nate loved it and as he watched Youtube videos and listened to their songs on Spotify, he became a big fan.

When he found out that they were coming to our local library to perform a concert he was psyched out of his little mind. Before the concert started he spotted THE Alphabet Rockers themselves and wanted to go meet them.  He was star struck.  When the performers knelt by Nate for this picture, he just stared at the singer on his right with a giant grin on his face like he couldn't believe the person from the Youtube videos was right in front of him.

Just imagine that same picture but Nate's head turned directly to his left and staring, unblinkingly, at the woman.  We had to call for him several times to get him to look forward for the picture.


READING RAINBOW

It's been the summer of reading for Nate.  Not only has he gotten into chapter books in a big way but reading clicked for him.  He can read just about anything now.  His favorite series of books are the Magic Tree House books.  I envy the woman that created that series since it's basically one book that she has published 50 times with different titles. Nate loves it though. I think he and Annie have read about 40 of them.  And while I know that sounds like I am being snarky, I AM NOT.

Nate has a fever and the only cure is more Magic Tree House.

P.S. Thank you to the primary for the great idea of head lamps.  Nate loves using it to read in bed.



I LOST MY TOOTH, LITERALLY

As often happens with kids, Nate seems to flow from one form of existence to another without warning and very suddenly.  I remember being shocked when he was suddenly old enough to start school.  It was just the day before that he was learning to crawl.  The same thing happened when turned 6.  One day he was a little toddler then the next he was 6 years old.

Well, it happened again this summer.  One day, he was regular Nate with all his Nate teeth in his little Nate mouth, then suddenly, his baby teeth just started falling out.  I don't recall ever being asked if this was okay.  


Thankfully, it has at least provided some entertainment.  Nate lost his first tooth pretty quickly and without much effort.  So we found it off that his next tooth stayed loose for about 3 weeks without seeming to want to come out.  Eventually, worried that he would swallow his tooth we told him we had to yank it out.  We tried to pull it out and even though it was loose, it wouldn't come out all the way.  The corner of his tooth was so firmly stuck that I began to get excited, thinking that if I could finally remove it I would be crowned king of England.  Sadly, I was not worthy and we had to leave it hanging on by an enamel thread.  

Later that day as Nate lay on the floor I noticed that it was gone. We looked around everywhere but couldn't find it.  After a while Nate finally said, "Guess I lost my tooth, literally!"

Eventually he told us that he remembers feeling something hard in his throat earlier so he kept swallowing until it felt better.  He swallowed the tooth.  It was like a time travel movie where we had gone back in time to make sure he didn't swallow his tooth but only ended being the reason he did swallow it! Following?


POKEMON GO!

You had to have seen this one coming.  For those of you who do not know what Pokemon Go is, I encourage you to open up a web browser and type in anything at all and something Pokemon Go related will pop up.  It's everywhere.

It really is perfect for Nate though.  With a cell phone car mount on his power chair we load up Pokemon Go and he can zoom around hunting for Pokemon on one of our phones.  He loves it.  We go to parks or just take walks around the neighborhood and it's great for Nate since it's so easy for him to participate.




It's also an equalizer in many ways.  Nate's #outoftowncousins are in town and he loves hanging out with them.  With Pokemon Go,  they can go out together and play WITH them.  Too often, when Nate goes to play with other kids, they just end up running around and Nate can't participate.  But with a game like this, he can not only keep up, but participate fully.

Tonight we spent some more time with his cousins playing the game.  And although I nearly suffocated while 5 children huddled an inch from my face to play the game on my phone with Nate, it was worth it.  Nate said it was his favorite part of the day.

It's been a great summer from San Diego to Pokemon and we are grateful for how much Nate is able to enjoy.



Sunday, July 10, 2016

Heading South for the Summer


Last time on our blog, we went into a little bit of detail about how Nate's body turned into a sadness pinata that burst open with erratic oxygen numbers, loss of his arm strength, the ever-threatening ulcerative colitis, as well as my two kidney infections.  

It's easy, when everything seems to be blowing up in your face, to feel like the world is horrible and and life is nothing more than a shell game with none of the shells actually containing a ball. But recently, we took a trip to San Diego.  

It helped me feel better and here's why. 

I think one of the things that truly marks you as a father is when you take your family on a yearly family vacation.  That, and getting out of bed one last time to make sure the front door is indeed locked. It always is.

But what was so wonderful about this vacation was that it could happen at all.  


Nate is literally on a 24 hour-a-day life support machine.  His ventilator batteries run out and his life is on a timer.  For survival and safety Nate's daily requirements are as follows:
  • a suction machine
  • a ventilator
  • suction tubing
  • suction catheters 
  • gauze
  • vent tubing
  • emergency bag with trachs, g-tubes, ambu bag and trach ties
  • humidifier
  • suction canister and tubing
  • pulse ox (oxygen monitoring machine)
  • pulse ox cords
  • g-tube extension
  • syringes
  • liquid food
  • cough assist machine and extra tubing
This is just a partial list of what he needs to have while sitting quietly at home  When we take him on vacation, we have to bring a week's worth of those supplies plus redundancies, along with the normal things he would need like any other child.  Not to mention a ridiculously expensive accessible van and his wheelchair.

Here's my point; despite all of this, we were able to drive 8 hours south in a day and live out of a hotel for a week.

As horrible as things can get some times, this is a genuine miracle.  Nate losing his arm strength was a major blow but it didn't stop us from visiting an aircraft carrier and sitting in a REAL JET COCKPIT. Don't believe me?

Observe.



You think Nate needs arm strength when he's got some Hellfire missiles at the touch of a button? (I have no idea if this plane had Hellfire missiles but Nate now thinks it does.)

Here's Nate about to slingshot off a carrier.  Everyone else had their kids kneel in front of the mannequin and mimic his pose, pretending to give jets the "go ahead" for take off.  Not Nate.  He was the JET getting the go ahead for take off.



We later ended up at the San Diego zoo. The San Diego Zoo was built in 1916 with the sole purpose of testing the resolve of anyone pushing a wheelchair.  It's the only reason I can think of that it was built on over 13 steep hills.

Here Nate is with the panda from the zoo. He thought it was hilarious that the panda just wanted to show everyone his bottom. Nate finds humor in just about everything and it's great.




As exciting as the zoo and the Midway carrier were, nothing beats his pure delight over the "transformer couch" at his Great-Grandma Lowe's house. When we visit there, she has a couch that pulls out to a bed.  Nate delights in "tricking" me.  He tells me that there is a bed in the room.  I guffaw, and respond by saying, "How could there be a bed in there, I only see a couch".

That's when Nate shouts, "and now...THE PRESTIGE!" and has me pull out the bed. I am thoroughly amazed and he is delighted. He loved the bed so much that he had me take a picture of him on the couch with his "class".   


Another activity Nathaniel was fond of in San Diego was sitting at the pier and watching...I don't know, the water?  Whatever he was watching he loved it down there.


And then there was Sea World.  Nate loved Sea World.  This was the kid that was "meh" on Disneyland but Sea World is his jam.  He's fascinated with sea life and getting to see orcas and dolphins in person was something special for him.  So much so that every morning after Sea World he begged us to go back there. We made the mistake of doing Sea World on the first day.


The animal shows were pretty boring for the most part.  Gone are the days of animals flipping and twisting through the air.  Now they mostly swim around splashing the first few rows while the trainers stand outside the tank in wet suits talking about the animal's names.

It's also very hot at Sea World. Not because it needs to be but because they hate shade there.  My theory is that since the only trick the animals can do now is splash people, Sea World needs to make sure the audience is so hot and dehydrated that being splashed goes from being annoying to something they desperately crave.

I mean, they're basically just getting a shower in their clothes while in public.  Do you know ANYONE that would want to do that if it weren't an absolute necessity for their survival?



But Nate loved it so...okay. The whole point of this is that we were able to have a great vacation in a far away city with a child on a life support machine. It's pretty amazing and while it doesn't make the bad things better it reminds us of how much is still possible.

I know pictures are not as fun as video but we didn't take any video on our vacation. So instead I'll leave you with this old video of Nate we stumbled on from when he was about 3.  Apparently he used to be afraid of garbage trucks.  Something I had forgotten until I saw this.


Sunday, June 5, 2016

Strap Yourself In - This Is A Long One

Blog posts have been few and far between these days. The reason for this is...rowing. Well, not rowing exactly but the sport gets me to my point.

For many years, after we had gotten our footing, our life was much like team rowing.  Difficult and tiring but with the right rhythm and coordination it was stable and consistent. Annie and I had a process and rhythm.  We learned the right way to do things and more importantly, Nate's condition remained consistent. We understood his sleep cycle (mostly), we knew what his oxygen number and heart rate would be every night (important numbers for SMARD kids) and we knew what his physical capabilities were.

But in the last four months or so it's like someone dropped a few narcoleptic Tongan wrestlers in our boat throwing everything into chaos.

Nate got a lot of cousin time with family in town.


I don't know if ulcerative colitis is the cause but that's about when things started going pear shaped. The steroids Nate was on as his body healed from the flare up had some negative effects.  The upside of the steroids was that he was always SUPER chipper.  The downside was that his chipperness extended into the middle of the night.  Nearly every night Nathaniel would be awake anywhere between 2 to 6 hours and ready to play. We were not.  We were never ready to play. This lasted about 2 1/2 months and towards the end his oxygen numbers and sleep time breathing changed. 

We don't know why and neither do his doctors but Nate started putting up lower oxygen numbers and would experience sudden drops.  This would send his alarms off waking us all up and then he would quickly stabilize.  It was during this time that he got sick.  This year had been relatively mild in terms of sickness but this one was a doozy.

Nate was out of commission for about 2 weeks.  As we constantly monitored his ulcerative colitis, tried to manage his sleep issues and worked to figure out why his oxygen and breathing had gone crazy, we now managed a pretty terrible cold.  And that wasn't even the worst part. 


I remember putting Nate in his wheelchair after he had mostly recovered from his cold and noticed something looked off.  Nate's arms were just dangling there.  I asked him to lift his arms up.  He struggled and twisted but couldn't move his arms.

I was devastated. I still remember (probably because I still feel it) the sickening, icy feeling explode in my stomach.

Nate had always been able to lift his arms up to about shoulder height. He was strong enough to play with toys and manipulate an ipad. 

That was all gone now. We knew it and it wasn't long before Nate understood what it meant. 

I don't know if a 6 year old can actually be depressed but it seemed like Nate was. For a couple of weeks he was angry, sad and not interested in doing anything but laying on his back.  It was, still is, heartbreaking.

I don't like writing blog posts about this kind of stuff.  I don't like it for two reasons; I don't like writing to the world about such personal feelings and it's too easy for this kind of dialogue to come off as self-pitying.  And when so many others have had to deal with so many harder things than us it feels embarrassing.

But I do want to put this stuff out there because I think it is important to see what goes on with families that have disabled members.  Just like I think it's important for Nate to get out of the house and not only experience things that may be difficult for us but for other kids to see that people like Nate exist.

We've been working hard with him and trying to build his strength back. He has made progress but is still only about 50% of what he used to be. Mostly we just feel drained, but every few days or so I'll see Nate try and do something he used to do easily like pick up a Goldfish.  And he'll struggle to pick it up and if he does manage he will wriggle his whole body trying as hard has he can to get it to his lips.  This breaks me. It's a new status quo for us and it feels bleak.

We don't know if he'll ever get that strength back but nothing can keep Nate down for long.  He's excited out of his mind for summer and he has a new baby cousin. For anyone who doesn't know Nate's feelings on babies, this should help: 


This was after he laid about 1,000 kisses on the poor victim....er newborn.



He also graduated from kindergarten this last week.  Which apparently is a thing. Here's Nate and his two cousins.  I don't know the third child on the floor but I do know that he loves donuts and was not going to move from his donut eating spot for our picture.  I can respect that.


Nate is also up to his old tricks again.  This time he invented a spoof of Teenage Mutant Ninja Turtles, Teenage Mutant Ninja Genes.  Here's the theme song he made.


So yeah, Narcoleptic Tongan wrestlers. We still don't know why Nate's breathing is so different, his sleep patterns are erratic, his colitis always seems on the verge of flaring up and now he's got the arms of a T-Rex. We're off our game. Whatever develops though, as long as we've got Nate making up theme songs to his own shows, we'll be okay.


Saturday, April 16, 2016

the BEACH!

I had this conversation with Nate today:

Nate: Dad!  We should build a robot Loch Ness monster
Me: I don't know if we could manage that Nate.
Nate: We could build it like they do in Jurassic Park.
Me: You want to make a Loch Ness monster like they made dinosaurs in Jurassic Park?
Nate: Yeah!
Me: Well, they can't really make dinosaurs like...
Nate: Yeah - scientists can make dinosaurs with dinosaur DNA but it doesn't work because the DNA is too old.  But if the Loch Ness monster is a Plesiosaurus then its DNA wouldn't be too old and we could make another one.
Me: ...Who are you?

This is Nate.  This all started because we were at the beach today.  A sort of redo from our fun yet failed attempt at doing the beach thing about a month ago. We went to the beach to walk along the nice paved path that overlooks the beach.  It's a nice walk and allows Nate the ability to drive his power chair along the beach.  But soon walking above the beach wasn't enough.  We wanted to get down in the sand. 

It dawned on me that Nate hasn't actually been on a beach since he was about 3.  He is six now.


I hauled him down and set him down. I showed him how beach sand clumps and can make shapes  and it was like a revelation to him. He began furiously piling sand up to make a mound with a look of pure joy on his face. He's been in sandboxes but beach sand is different, stickier, and endless. 


We decided to stay.  I went back up the small bluff where we had left his chair and equipment.  But when I came back down I came back to a soaking Nate and Annie. I'll let Nate tell you about it in the vlog he was dying to make.

By the way, this video is all Nate.  Which is why it's title "bread".  He thought it was hilarious.


Rookie mistake.  We hadn't planned on staying when I initially set Nate down so we didn't think much of how close we were, until the ocean was upon us...or them.  I was nice and dry.  Nate wasn't phased though.  He did not want to leave.  Annie went back to get the car from the other parking lot and I took Nate's pants off and zipped his (apparently waterproof) pleather jacket around his waste. 



Annie made it back with the van but there was nowhere to park so she had to wait in the parking lot.  So, I wrapped the vent, his emergency bag and his suction around my shoulders, grabbed Nate in my arms and lifted.  Then I climbed up the sandy, slippery bluff to the parking lot.  The ONLY ever time I remember being that exhausted was the first time I watched Gilmore Girls with Annie (why do they talk so fast). 

Despite how uncomfortable and crazy it all was we had fun and Nate loved the experience.

So this time we were prepared.  First thing we did was get a beach wheelchair from the park. These things exist and they are awesome.  Nate wasn't sure how he felt about it until he was in it but then he didn't want to admit he liked it so he tried to suppress his smile and scowled until he forgot he was trying to be obstinate about five seconds in.

This is a picture of Nate's body betraying his true feelings about the chair. He is not pleased with his thumb's insolence.


Still not quite on board with the chair. Fighting it!


Finally forgot he was supposed to be hating it. 


Next, a friendly couple let Nate use their kite.  The beach!  Kites!


Next, I dug a big hole and buried Nate in it.  Nate was NOT happy about it.  I know, I know.  He looks happy in it but it's only because I told him he couldn't come out until he acted like he was enjoying it.  In a year the memory of him hating it will fade and this will be the only evidence and it will prove he loved it and I win. Ahhh, fake memories.



We also found a hermit crab.  Nate was wary at first but eventually he was into it.  He even started picking it up.  And he even named it, Mr. Hermit. As creative as Nate can be, he's terrible at naming things.



The next game and by far the most exhausting thing I've ever done was to play run away from the waves.  Nate thought it was the best thing ever.  It erased all memory of him hating being put in a sand hole.  All going according to my plan.






The best part about the video?  The fact that Nate looks like a muppet while we're running.



Great day at the beach.

Friday, February 26, 2016

NateTube

Nate recently discovered iMovie.  It is both delightful and exhausting.  The other day, a girl in Nate's class started chasing his cousin Tommy around.  Nate thought it was HILARIOUS and did not stop talking about for the rest of his life.  Or at least at this rate that is how it feels. 

He insisted he make a video of it.  That's right, Nate has started a gossip vlog for his kindergarten class.  Please note that while Nate didn't push every button for himself, this video is 100% his, from choosing what sound effects to use to how it is all laid out.

And in the future, be careful what secrets you let Nate in on. You just might find it's YOU featured in Nate's next entry.


Sunday, February 7, 2016

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.