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. 


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.


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.


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?


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?


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.