The Hospital, Again!

A few weeks Annie and I went to change Nate's trach as we do every couple of weeks but it didn't go well.  Poor Nate.  I removed the old trach and as I tried to get the new one in, it wouldn't fit.  Annie had to hold Nate down so I could keep trying and for a minute we both began to worry that we wouldn't be able to get it in as attempt after attempt failed.  We'd never run into this and became doubly alarmed when he started bleeding.  The whole time Nate was crying and begging us to stop and hold him.

It was a terrible experience that reminded us of how easy it is for things to go wrong when you have a child that is on 24 hour life support.

Well, we did get it in eventually and it turned that he needed a revision surgery to fix the problem.  Phew, it wasn't just bad aim on my part.  Thankfully, the doctors saw the urgency in the matter and within a couple of weeks we were in the pre-operating room.

We had prepped Nate well in advanced and he handled it well but was still nervous, so the nurse kindly gave him some drugs to calm him and within a matter of seconds Nate was high as a kite and giggling in his soundless way at everything.   Nothing funnier then seeing your 4 year-old with the giggles and the munchies.


At first he was just zoney and talked like he had marbles in his mouth.



Then he couldn't stop his soundless giggles.



This wasn't the worst hospital stay we've had.  We only had to stay about 6 days (although it was supposed to only be 2) and the staff was very nice to us.  Initially, we thought the week was going to go badly.  Nate came out of anesthesia very badly.  For about an hour he cried and begged to go home.  Every tube and wire attached was bothering him and he just wanted to go.

Eventually though he calmed down and actually enjoyed much of the experience.  Nate received visitors constantly, had some new toys to play with was generally given a lot of attention.  Although, he never completely lost his vigilance.  Always worried someone was coming to poke his I.V. or do him harm, he greeted everyone who entered with "What are you here for?".  He didn't mess around and was not ready to be friendly unless you made your intentions know and he deemed them harmless.

Nate guarded his room tenaciously.  

By the end Nate was telling us he didn't want to leave.  With all the attention and playmates he was getting who could blame him.

 

 

 

Nate soon became famous with his winning charm and ability to spew every fact ever known about dinosaurs to anyone who would listen.  His knowledge of dinosaurs became so renowned that people would visit just to ask some questions.  We suspect some weren't even medical staff but Stanford students doing paleontology reports and Nate was their source.

We even had people come down from the play room (since Nate couldn't leave his room) to bring him dinosaur toys since they had heard about him and his love for dinos.

Here's Nate teaching his BFF George the basics of dinosaurs.


Nate's trach is nice and clean now and we're no longer worried about switching trachs.  At first I was a little exasperated at the hospital stay but I realized that this is the life of family with a severely disabled child. Nate will be in and out of hospitals throughout his whole life and probably undergoing procedures much worse than this.

It's what we signed on for coming into this world.  Sometimes I wonder if I could go back in time and avoid having a child with SMARD, would I do that?  Would I give up Nate to have some other child without SMARD, or no child at all?

 The answer is always "no".  So if I wouldn't be willing to give up the life I have, the child I have to spare us the never-ending pain of a genetic disorder, then it can't be anything but a gift.

It was MOTHERSDAY!!!!!!!!

Nate was totally psyched for Mothers Day.  The whole day started off with not one but TWO batches of waffles!  One batch was entirely uncookable much less edible (to this day Annie thinks I'm more capable in the kitchen then I am despite the overwhelming yearly proof.)

Nate was all about Mom and even got to sit up on the stand at church and sing with the primary kids.  He gleefully hung over the railing and announced how high he was.

Nate loves his Mom and how could he not?

 

 

 

 

Also Nate had his Spring Sing a couple of weeks ago.  His Tiny Tots class has been practicing songs all year and Nate had the chance to strut his stuff.  The chair was a bit small for him to be able to balance on but he pushed through, with some great help, and gave a "The Voice" worthy performance.  Which isn't saying much this season, amIright?

 

 

  

 

OUTTAKES!

 

 

Dancing Fool

ZOMG THE ZOO!!!!!!!!

It's been a busy week and it makes us feel old.  It's hard to get Nate out and about but Annie and I knew early on that we wanted to do as many normal things in the outside world as possible with Nate. With Nathaniel on Spring Break this week we decided to get some things done.  High on that list for Nate was the zoo. 

We were trying to decide which zoo to attend, San Francisco or Oakland.  We based the decision solely on the fact that Oakland had elephants.  We did not, however, take the zoo's topography into account.  That may have been a mistake.  The Oakland Zoo has hills.  Or maybe it's better to say that the Oakland Zoo is made up completely of hills.

Hills + heavy wheel chair + Nate + equipment that comes with Nate = and exhausting day.

 

Nate was largely unimpressed with the lone elephant, boring him to death by doing nothing but eat some hay nearly as far as possible from the fence. Regardless of which zoo we attended Nate loved it and now we are sore.  In our defense we had done some hiking with Nate in Huddart park the day before which already had us a bit worn down.

About 8 months ago Nate started getting more and more anxious about life.  Not having any control over situations, including control over your own body, makes everything more nerve racking.  Annie and I have worked very hard to try and break him from this and we've seen some success lately.

I couldn't believe Nathaniel was willing to pet a goat.  He loves animals.....but always at a distance.  Not only did he want to get close to the goat but he even petted it, and enjoyed.  He enjoyed it so much he wanted to pet all of the goats.

 

 

 

Towards the end we got to see the tortoises which was a huge delight to Nate.  It's always fun for us to see Nate do normal things in spite of his limitations.  For me, at least, I forget that he's just a normal 4 year-old in most ways and I remember when I see him pulling on the railing's of the paddock trying to get himself as close as possible to the animals.  I look around and see other kids doing the exact same thing and it makes me happy.

 

 

All in all it was great trip and Nate loved it.

 

 

Nathaniel's Birthday

For the longest time, at least starting in college, I didn't see much point in celebrating birthdays.  All it says is that, through very little effort of my own, I was able to not die for another year.  In fact one year I forgot altogether it was my birthday until my mom called me.

 

Well, for Nate each year means something.  We came so close to losing him on several occasions and each passing year is not only a celebration of Nate's continued existence on Earth but of our gratefulness for what he brings to us each day.

 

And Nate's birthday couldn't have come at a better time.  Annie and I have been completely ignoring him as we've tried to get everything moved into or new apartment so it was a good excuse to stop everything and spend the day with Nate.

 

This meant doing whatever Nate wanted and what he wanted was the Children's Discovery Museum.  Nate had a lot of fun and was able to participate in a lot of the activities. 

 

 

He did the bubble pull and was able to hoist the sheet of bubble out all by himself.  Of course by the time I thought to film it has was pretty well spent but I was pretty impressed with his ability to pull up the thing hand-over-hand.

 

 

And boy did Nate love Waterworld, and by that I DO mean the great Kevin Costner classic.  On a more related note, Nate loved the waterworld area of the CDM.  He got pretty good at throwing balls into the whirlpools.


 
 
 

 We ended the night with Transformer cupcakes and some presents.  Nate's ability to pull levers, throw balls and crank wheels were not the only feats of strength performed that day, he was even able to blow the fire on his candles.  He couldn't blow them out but he definitely made the flames move.

All said and done, it was a great success and probably his best birthday.  If you asked Nate what his favorite part was he would probably tell you the hollowed out Fire Truck at the museum....or the hollowed out ambulance.....or the bones of a Mammoth......or being sung to at Tiny Tots....it was hard for him to choose and it changed moment to moment.

 

I'd say that's a good B-day.

Coastin'

Nate has had a great year so far.  Just in this month alone he has had his first sleepover, started primary and visited his first amusement park.  AND!  Nate went on his first roller coaster and LOVED it.

 

We decided to go to Happy Hollow this last week.  We try to do things with Nate that sound painful and exhausting for us because that's usually a good indicator that it is something exciting for him.  Nathaniel has never been on anything even resembling a ride and even though there is some anxiety for us to do something like this we knew it would be good for him and us.

 

 

 

 

First up was the Merry-go-round.  Nate thought it was loads of fun so we thought we'd check out what other rides there were.

 

As we neared the back of the park Nate saw the roller coaster and it was love at first sight.  I don't think he knew exactly what it was but he saw it going around the track and knew he wanted to be on it.  The ride seemed pretty tame so Nate and I put on our matching shirts and hopped on.

 Nate was so excited to be on the rollercoaster, I thought he was going to shake himself apart.  Once the ride got going I was worried that he was going to have a smile permanently attached to his face.  This may sound great but if he has a permanent smile then what was he supposed to do during serious moments? 

Anyway, Nate loved it.  He loved it so much we had to ride it again immediately. 

Nate has a lot of anxiety issues.  The world is full of loud and scary things and he doesn't have any control over them, he can't just run or walk away from something that is upsetting him.  This makes him a little more anxious then other kids his age but one thing I know, Nate is ALWAYS up for something that gets his adrenaline up. 

 

 

Let's Talk About Christmas

Annie and I were very excited for Christmas this year since it was the first year that Nate was really going to be aware of everything and be excited for it.  Almost as soon as he discovered Transformers he knew what he wanted from Santa this year and it never deviated, Optimus Prime.

 

It was great fun to see Nathaniel participate in traditions that I had as a kid, not to mention how much fun he had with uncles, aunts and cousins, which he saw lots of.

 

This was Nate and Callie making Candy Cane cookies to put out for Santa on Christmas Eve.

 

It was delightful to seem him with a Christmas wish but Annie and I also wanted to make sure Nate understood what Christmas was really about.  So, we mixed up the traditional Christmas activities with food donations, hospital visits and a book drive for kids in the hospital. We told him he was helping the kids that need help.  I think we can safely say that Nate was just as excited about the Nativity story as he was Santa.  This made his role as one of the wise men on Christmas Eve particularly exciting for him. 

He could not wait to get in his wise man costume, which he picked out himself.

Maybe one of these days the secret film of the Green family Nativity will see the light of day.

The 3 wise men.  Uncle Marcus probably changed his costume about 6 times that night....what a diva.

Pajamas on Christmas Eve.  Nate finally is able to make sure his love of construction vehicles follows him to bed now with his construction vehicle jammies.

"Hmmmm, do I like what's happening"

Is it just me or does Nate's left arm look really tan?

Christmas morning finally arrived and Santa brought Nate an endless supply of Transformers.

And then Nathaniel saw it under Grammy and Grandpa's Christmas Tree.  Optimus Prime!

Optimus Prime reaction shot.

Nate loved Christmas, received Optimus Prime (which he played with for 6 days straight) and was able to experience giving to those who are in need this season. And in his nightly prayers he still prays for Heavenly Father to bless the kids who need help.