Nate!

9 Days

Nate loves to sit on the balcony and watch the cars go by our apartment. I think what Nate likes most about them is that they move. Something he does not.


Every night we have a routine. For awhile there Annie and I were so tired we would do all the maintenance things we needed to do to Nate then put him in bed. Venting his tube, changing his diaper, getting his night time meal ready, suction his trach, attach his oxygen monitor, plug in his vent and humidifier and put his hand splint on. We decided it would be better to make bed time more happy.

Nate has a friend. He's called "Bunny" and while we don't trust him Nate seems to like him, a lot. More than us actually. He got him during the pneumonia stay of 2011 and they've been great friends ever since. After putting him in bed we'll give him Bunny and Nate will go bananas kissing him and hugging him.


Before that though we sing a song, usually a primary hymn. Nate's favorite seems to be Give Said the Little Stream. After that one of us says a prayer. Recently Nate has begun folding his arms when we start to pray. Tonight, as soon as I said: "Nate, its night night time", he folded his arms ready for the prayer. This is Nate trying to fold his arms with his hand splint on:



Oh, and here is Nate being dorbes.

Near Life Experience

In the time since the last entry Nate has come close to death taken to the hospital where he received a tracheostomy was sent home, almost died, went back to the hospital, came home again had another event, went back to the hospital and is finally home again today. I'm not going to bother to check the grammar in that sentence.

Nathaniel has been a real trooper though. He has remained cheerful albeit smelly. There are all sorts of things that come with a trach that they don't tell you before hand. Nate needs an over night nurse as long as he has the trach. The trach can get plugged and suffocate him, we always need to carry a suction with us to suction gross liquids from his trach and his trach is attached with cloth wrapped around his neck, so its not too sophisticated and can get gross.

He seems to be happier then ever though. This is Nate being floppy. Lately he thinks its really fun to fall over.

Much Needed Haircut

Do you notice something different about our apartment....looking closely. I'll give you a hint, look for a ridiculous amount of hair.

That's right, there's a Nate in it now!




Annie and I held a press conference this weekend to announce that Nate was finally home. It is wonderful but not without its hiccups. Most frustrating of them being his breathing machine he is supposed to sleep with at night.

The problem is that it doesn't work. So that's a negative. So it actually hinders Nate's breathing and causes his oxygen levels to drop. His alarms then go off. This happens all night, about every 15-30 minutes and we have to get up and get his oxygen levels back up.

On the bright side Nate got a haircut. I feel like his hair is better untamed and wild, much like Nate but we have to keep that mullet in check.

Before


After...well during really.



Still before but its a great pic of Nate when he was in his wheel chair. Something about that chair that made him so happy.

Professor X

Whats that you say? There is life outside the hospital? Well, Nate finally got a glimpse of that this last week. Nathaniel has become depressed. He is clingy and cries a lot but we've noticed that if he can be engaged or leave his room him immediately brightens up. We've taken every chance we can get put Nate in his wheelchair and wheel him around. At least once a day they even let us take him outside.

Nate Loves his wheelchair. You don't even have to take him anywhere all the time. Sometimes he just brightens up if you sit him in it. He loves to put his arms up on the arm rests and practice his best Emperor Palpatine.

Still in the Hospital

Nathaniel is still a resident of Valley Med hospital. Its not the most desirable real estate but its not the worst. Nate had been intubated with a breathing tube for 3 1/2 weeks, including the brief time he was off of it and then had to be put back on.

Last Wednesday they took out the breathing tube and replaced it with a mask that constantly pushes air into his face. He doesn't like it. Thankfully on Monday the doctors started taking the mask off for the day and then putting it back on at night. This happens for 2 reasons.

1. They are afraid of wearing him out by having him breathing on his own.
2. Nate is suffering some pretty hard withdrawals from all the drugs he was on for the 3 1/2 weeks of intubation.

Its scary to see your 1 year-old go through this process and its an added headache. Is was in decent spirits today. The doctor is optimistic that we'll be out by the time he goes to college.

He has the sponges on a stick that are used for teeth and mouth cleaning. Turns out he loves them. He has replaced his old addiction for drugs with a new addiction for mouth cleaning sponges on a stick.



This was Nate on Monday, his first day with the mask off. It was bliss

Nate turned 1 recently. About 2 weeks before he landed in the hospital we had some pictures taken so that our manipulative brains had no power to distort our vision of him at 12 months old.

We received the images while he was in the hospital. He hasn't really opened his eyes or been himself for a week and a half and it was a tremendous gift to these during this time.

Top 5

Nate has been in an induced coma for the last 5 days. So far one of the hardest parts has been that there has been almost no change in his condition day after day. We've basically had our son taken from us for the last 6 days. Its not the worst case scenario but its tough. We miss him and we miss his personality. Annie and I find ourselves talking about our favorite things he does. I though I'd share some of them.

1. One of our favorite things Nate does is listen to music. Often times when I'm at my computer Nate will crawl over and grab the over-the-ear headphones I have plugged into the desktop, look up at me, and make sounds. Thats my cue. I'll play some songs and turn it up so it comes blasting out the headphones. Nate will hold them and bob his head. He'll stay there until I stop the music.

2. Nate loves to play with balls. Big ones, small ones, even the dreaded black one has become nothing more than his play thing. For a while Nate was terrified of a black exercise ball we have. Now he loves them all. He'll play catch. He will sit there and push the ball to you and wait for you to push it back. Sometimes he'll play with a toy thats not a ball, but if the ball is nearby he'll often still keep one hand on it.

3. Electronics. He truly is my son. You'd think that an infant wouldn't be able to tell the difference between a brick and an Xbox, but he can. He's not fooled by baby versions of phones and laptops either. He wants the real deal. Not a day goes by that Nate doesn't race to some electronic to turn it on and play with it. His favorites are the Playstation 3 and the Xbox. He loves turning those on.

4. Oh, you're trying to call me on the phone, well good luck with that if Nate is nearby. Trying to talk on the phone while Nate is close at hand soon becomes a wrestling match. Whoever can pry the phone from the other's grasp is the one that gets to talk. Unfortunately when Nate does get a chance to talk he just gets a big grin on his face and then proceeds to eat the phone.

5. Itsy Bitsy Spider is a song Nate has heard since birth. He has spent the last year honing his motor skills for the sole purpose of doing the hand motions that accompany that song. One day he'll learn more than two of the motions. As it is, when you sing itsy bitsy spider he starts to move his hands like the spider, then he throws his arms up for the "out came the sun".

Everything in between and after is irrelevant, he's a busy kid. Then its back to the spider, so we sing "the itsy bitsy spider" part again. Then he throws his arms back up so we sing "out came the sun" again, then........thats right, back to the spider. He thinks its a blast. He'll learn the rest eventually.

This Song That Never Ends

Nate got a cold last week. For a normal baby that isn't a problem but for Nate it is. Ya see, all humans with super human abilities also have a weakness. Superman and kryptonite, Green Lantern and Yellow or wood (I'm not joking thats true)and Batman and bullets to the mouth. Nate has super human cuteness and intelligence but his lungs are his weakness. Every time he gets a normal cold it is very dangerous. This time it hit his chest hard and we had to call an ambulance at the mall. It was as great an experience as it could be. Nate was limp and turning blue but as soon as he heard that fire truck pull up his head popped up and he came alive. A little boy's dreams to have a fire engine drive up just for you.

As the paramedics worked on him we could hear the crowd passing by and expressing concern, it touched my heart a little when I heard that a couple passing by stated that they were going to pray for that little boy.

Post surgery for Nate was rough but this was the first time we actually worried for his life. At one point, while in the hospital, he couldn't breathe for himself anymore. His oxygen dropped and a team of doctors rushed in to work on him. Even with assistance his oxygen kept dropping. Finally, after about an hour of work they stabilized him. He is on high pressure oxygen now and we just need to get him through the congestion then he should be fine.

Its tough but its the price you pay to have super powers like Nate.

Nate woke up for a little today. Gave us some weak smiles and tried to talk.


Nate awake and dressed up as a droid for a Star Wars convention





Just after he was stabilized.

Nate turns one

Nate started off his birthday by giving himself the greatest gift you can give yourself when you're an infant. He slept in past 8:00. When you get off to that good of a start it seems there's nowhere for the day to go but down, but the fun just kept coming.

First activity was a treasure hunt for birthday presents.


Next came a haircut, which wasn't really that fun but at least Nate doesn't look like a homeless stoner anymore.


Then we went to the store (i.e. took a roller coaster ride in an awesome shopping cart) and played some more at home.



Then came the pants off dance-off. Nate hasn't learned the difference between pants and shirts yet but it was his birthday so we thought it best not to point this out.


Finally it was time for cupcakes. Nate approached this token of love from his mother (which took her two batches to get right) just as he does all other food and gave it the good smashing it deserved for daring to make an appearance on his tray.



After a nice hot soak in the tub to get the frosting off, Nate finally got something he really wanted. A yellow rubber ball, just for him. It is now his most prized possession and he spends half the day holding it, pushing it around, and attempting to beat his current record for throwing distance (half an inch).




I should probably fess up now to not being Scott, but rather his lovelier, if not better, half. After three long years of marriage I was finally invited to guest post on our family blog. Don't you think I did a good job at trying to be Scott though?

Slave Labor

Annie and I thought it was time Nate started earning his keep around here.

Bag of Tricks

Nate has really enjoyed doing "tricks" lately. There have been times in the past when Nathaniel would humor you and lift his arms up when you asked how big he is, but mostly he has had little desire to play these games. The last couple of weeks though he has decided to oblige.

We caught him doing some of these. When Annie and I were replaying the video and Nate was watching he on, he would mimic himself doing the tricks. At the part in the video I asked, "how big is Nathaniel?" I looked over to see Nate watching the video with his arms straight in the air. It was pretty fun.

Another game he likes to play is when one of us snores and pretends to be asleep, Nate claps to wake us up. He gets a kick out of it. The best part is that he started the game. One day I pretended to be asleep. As I peaked out and watched his reaction I saw him study me then spread his arms out and then clap as loud as he could. Which was about as loud as crumpling a piece of paper. Ever since then he has liked playing that game.

Monterey

Annie and I went to Monterey this weekend. Its been a rough week with all the roller-coasters of Nate's problems so we thought we'd leave him to fend for himself for a night and stay at a nice place in Monterey. Had we known that Nate would pawn all of the expensive jewelry and electronics in the house to buy more pediasure we might not have left.

We stayed at a B&B (that means bed and breakfast) and it was quite nice. B&B's are odd places. You are paying money to stay at an inn yet there exists an unseen social force that requires you to act in a way you don't want to.

Breakfast for example: Included in the price was a breakfast (thats where the genre derives its name). Yet, to access the breakfast we had to sit at a table with all the other guests. Annie and I emerged and saw a little table out on the porch. I thought about having a breakfast out there by ourselves but did not want to offend the complete strangers at the table. Strangers we never saw again. Its like being forced into some bizarre social structure. Suddenly all the guest began trading stories about travel arrangements. These stories were not amazing nor funny but everyone acted as if it were the best time they'd ever had.

A testament to why you should always ask a kind stranger to take your picture for you.


The sitting room. Its for sitting.


Us being stately in our stately robes, sitting in our stately chairs in front of our stately fireplace with a stately brandy decanter on it.


Annie is very bad at Hide and go seek.


Guess where this window looks in to?


Thats right! The toilet.




Me pouring a glass of brandy but not drinking it. There was free liquor everywhere in this place. Every flat surface in the house was made into an alcohol platform.



Pictures of the cool room.


Oh yeah, and Nate doing this.