Christmas was great. It was really, really great. Nate was sick and sad but still managed to smile and be happy most of the time. Years ago my brother Marcus and his wife Jenny were snowed in and could not fly in for Christmas Eve. The spent the night with their two girls, ages 1 and 2 I think, filming their version of the Nativity story.
It was cute and charming. Since then they have made A Christmas Carol and this year Nate helped film How the Grinch Stole Christmas. Jenny did the filming and I did the editing.
Saturday, December 25, 2010
Sunday, December 12, 2010
3 days more
Nate spent another 3 days this week in the hospital. We took him in for his normal check up on Monday and the doctor freaked out about his low weight and sent us to the hospital. The low weight is concerning, her reaction was just as concerning. We spent 3 days in the hospital and no one really knew why, including most of the doctors and nurses.
Nate has a deadline. If he cannot show that he can gain weight by the 21 then he will be admitted to the hospital and receive a temporary feeding tube. A few weeks later they will surgically implant a feeding tube directly into his tummy....I mean stomach. I feel like there is a countdown above our heads and it makes enjoying the season a little difficult. If anyone would like to help, feel free to send food. Nate likes mountain dew and doritos.
On the bright side Nate is wonderful. He loves to push himself backwards. Sometimes he disappears and we find that he has pushed himself backwards into the closet or under the bed.
For example; here is Nate pushing himself under the bed. He got so far under he couldn't push back anymore.
Nate has a deadline. If he cannot show that he can gain weight by the 21 then he will be admitted to the hospital and receive a temporary feeding tube. A few weeks later they will surgically implant a feeding tube directly into his tummy....I mean stomach. I feel like there is a countdown above our heads and it makes enjoying the season a little difficult. If anyone would like to help, feel free to send food. Nate likes mountain dew and doritos.
On the bright side Nate is wonderful. He loves to push himself backwards. Sometimes he disappears and we find that he has pushed himself backwards into the closet or under the bed.
For example; here is Nate pushing himself under the bed. He got so far under he couldn't push back anymore.
Sunday, December 5, 2010
Thursday, December 2, 2010
Disneyland
We went to Disneyland this week. It was an early Christmas present and a quick trip. One day to drive there, one day at the park and then back the next day. There were only two drawbacks; Nate couldn't go to the park with us and Nate had to sit in a car seat for 6-7 hours.....twice. Lets take a photo tour.
After hours of being stuck in the car seat Nate was so happy to get out and play in the back seat for a little while as we sat parked in a gas station parking lot. A sad little boy became the happiest boy on the planet.
Until we told him there were still 2 more hours of driving.
There were many sections of the park that were really well decorated. Especially the "Its a Small World Ride". The creepy lifeless dolls seemed to frighten less and entertain more as they sang Christmas carols instead of pounding "its a small world" into your weakening psyche.
I cannot understand what the appeal is in that ride. Its like watching Chucky come to life.
On this trip though, Annie and I took a ride on the Disneyland train for the first time ever. Best decision we ever made, yes I mean that. Not only did we ride around the park but we got to take a very weird trip to the prehistoric Grand Canyon.
Nate was so excited to head home that his whole mouth and tongue went numb.
Nate was such a good boy that I let him drive for a little bit. There was an.... incident. Mistakes were made and now we know not to let Nate drive. So, all-in-all it was a good thing, a learning experience.
After hours of being stuck in the car seat Nate was so happy to get out and play in the back seat for a little while as we sat parked in a gas station parking lot. A sad little boy became the happiest boy on the planet.
Until we told him there were still 2 more hours of driving.
There were many sections of the park that were really well decorated. Especially the "Its a Small World Ride". The creepy lifeless dolls seemed to frighten less and entertain more as they sang Christmas carols instead of pounding "its a small world" into your weakening psyche.
I cannot understand what the appeal is in that ride. Its like watching Chucky come to life.
On this trip though, Annie and I took a ride on the Disneyland train for the first time ever. Best decision we ever made, yes I mean that. Not only did we ride around the park but we got to take a very weird trip to the prehistoric Grand Canyon.
Nate was so excited to head home that his whole mouth and tongue went numb.
Nate was such a good boy that I let him drive for a little bit. There was an.... incident. Mistakes were made and now we know not to let Nate drive. So, all-in-all it was a good thing, a learning experience.
Monday, November 15, 2010
Nate Loves Apples
We've discovered Nate loves to munch on apples. The video is kind of long cause I didn't want to have to chop it up. So soak in the minute or two of Nate and apple.
Monday, November 8, 2010
Surgery
As most of you know Nate had surgery about two weeks ago. What most of you don't know is that along with fixing his diaphragm they also extracted his soul, which took several days to return. After the surgery Nate was a zombie, which is great for zombie lovers. Annie is not a zombie lover. Occasionally he would open his eyes and stare. Annie and I would smile at him and try to get his attention but he would just stare blankly. It was very unnerving.
You can't see his surgery cuts but you can see the chest tube. For those of you who don't know, chest tubes were created by Satan with the specific purpose of killing happiness. Nate had to have this in him for days and it was painful and very uncomfortable. He didn't have a good sleep nor could he be off of morphine until they took this out. The tube went into his lung lining and pumped out air and fluids that were caught in there. It was miserable.
He was doped up and for the first hour so when they brought him out of surgery. He looked as you see in the picture except he had a breathing tune in his mouth. The breathing tube was supposed to be extracted by a doctor or nurse when he started to wake up. You think in the intensive care unit there would have been a doctor or nurse around. There wasn't so as Nate started waking up he started to gag on the thing and yanked it out himself. A wonderful bit of defiance that I was happy to see.
All of the wires and tubes are either in him or connected to him in some way. He struggled and whined as the anesthesia war off. The only way we could calm him down and keep him from ripping things out was by lashing his hands to the bed. I didn't like that so I held him and he calmed down and fell back asleep. It was a very sad moment.
After days of problem after problem Nate finally began to stabilize and he came out of the stupor. He wasn't completely back to normal but it was a huge difference and we were happy. That is until they told us the surgery might not have worked and his breathing still had problems because his lungs were crushed. It took another 5 days to work that out.
You can't see his surgery cuts but you can see the chest tube. For those of you who don't know, chest tubes were created by Satan with the specific purpose of killing happiness. Nate had to have this in him for days and it was painful and very uncomfortable. He didn't have a good sleep nor could he be off of morphine until they took this out. The tube went into his lung lining and pumped out air and fluids that were caught in there. It was miserable.
He was doped up and for the first hour so when they brought him out of surgery. He looked as you see in the picture except he had a breathing tune in his mouth. The breathing tube was supposed to be extracted by a doctor or nurse when he started to wake up. You think in the intensive care unit there would have been a doctor or nurse around. There wasn't so as Nate started waking up he started to gag on the thing and yanked it out himself. A wonderful bit of defiance that I was happy to see.
All of the wires and tubes are either in him or connected to him in some way. He struggled and whined as the anesthesia war off. The only way we could calm him down and keep him from ripping things out was by lashing his hands to the bed. I didn't like that so I held him and he calmed down and fell back asleep. It was a very sad moment.
After days of problem after problem Nate finally began to stabilize and he came out of the stupor. He wasn't completely back to normal but it was a huge difference and we were happy. That is until they told us the surgery might not have worked and his breathing still had problems because his lungs were crushed. It took another 5 days to work that out.
Wednesday, November 3, 2010
Out of the Hospital
We were finally discharged from the hospital yesterday and Nate is doing pretty good. But before we discuss the details, maybe on of the cutest videos ever. Nate loves clementines. I've never seen him try so hard to get something in his mouth before. I almost lost a hand.
Sunday, October 24, 2010
Week in the Hospital
2 x-rays
2 Fluoroscopic tests
1 Barium Swallow
1 Urinalysis
2 ultra sounds
1 heart echo
1 MRI
1 CT Scan
4 blood tests
3 neurologists
2 Surgeons
2 pediatricians
2 Geneticists
1 Nutritionist
2 lung specialists
and about 10 other doctors and residents
This was our last 2 weeks. On Tuesday Nate will undergo surgery and hopefully it will fix his breathing problem. Most of the time Nate thought it was the greatest adventure ever. He loved looking at all the machines and lights and the loved all the attention he got from the nurses doctors. Nate was the talk of the hospital. Lets take a look.
He had to be hooked up to oxygen for the first few days. He kept trying to pull the tube into his mouth and suck on it.
Excelsior!
"I feel a draft". His little hospital gowns were pretty cute.
He finally got his IV out after 6 days of having it in. We had to cover his IV hand with a sock to keep him from chewing it off and after 5 days it smelled like death. Getting it off and giving him a bath was almost as good as being discharged.
Nate made sure to always to do his stretches before his tests to prevent injury. Didn't want to pull a Hammie.
Despite all the interrupted sleep, the tests, the poking and the prodding, Nate stayed cheerful and happy.
The Pediatric floor had a nice playroom that we visited whenever Nate was unhooked from the machines. Nate thought it was great fun.
Wednesday, October 13, 2010
Barium and Tears
Things have been happening and they have not been fun. Last Monday Nathaniel had his 6 month check up. By tomorrow Nate will have visited a doctor 3 times, seen 2 specialists and had 4 tests run on him. Nathaniel breathes very rapidly and in reverse. That is to say, when he breathes in his diaphragm moves upwards, and downwards when he breathes out. For those of you who did the coke bottle, lungs and diaphragm science fair project in elementary school, you know this is backwards.
Today he had to undergo a barium swallow and a second ultrasound test. He made it through the US test without a peep even though he had been fasting for 3 1/2 hours at that point. We arrived at the x-ray room and things got harder. Nate is a brave kid. I mean he really sucks it up and does what needs doing. Seriously, I saw him stare down a tiger once.
But bravery can only go so far. We laid him on the bed and everyone but me put on lead aprons. Only one parent could be present so I had to leave and watch (and hear) from the other room. I saw them lay little Nate down and watch them pull the machine over him while Annie held him down. Next they tried to feed him barium through a bottle, he refused. Atta boy Nate! This whole process had been inefficient and absurd at times so I was happy to see my boy spit that barium back out. Next they tried to squirt it into his mouth with a water dropper. He'd seen his cousin Sammy do this thousands of times so he knew the drill and swallowed a little. I watched the x-ray pictures and saw the barium trickle into his stomach. But it wasn't enough.
Finally they had to create a more diluted barium concoction that was sweeter and feed that to him. Nate accepted this offering, but just barely. They laid him back down on the table and pinned him down again. At this point I began to hear his crying. Not loud annoyed crying but moderate cries of sadness. Fed up of being held down, poked and prodded for over an hour he finally lost it. They finished up finally (after they stopped to chat with a doctor about a room scheduling conflict while Nate was in the middle of the process) and I was free to enter the room.
Nate lay on the bed and I went to pick him up. He was a picture of patheticness. He had barium all down his face and his hair was matted down from barium that had spilled and dried on a large portion of his head. Fresh tears made a line from his eyes to his ears. He had barium on his hands and his shoulders and his face and he was exhausted. There was Nathaniel in naught but his diapers covered in barium and tears.
But he is a brave kid. It takes a lot of poking and prodding before he starts to lose it. Even then you see his bottom lip push out and tears well up and he fights them back. He'll do that for another couple of minutes before he actually loses it. He is brave indeed. Seriously, I saw him smack Mike Tyson in the mouth once.
We still don't know what will happen with him or what his problem is but hopefully we'll know soon. Until then, here's Nate sitting.
Today he had to undergo a barium swallow and a second ultrasound test. He made it through the US test without a peep even though he had been fasting for 3 1/2 hours at that point. We arrived at the x-ray room and things got harder. Nate is a brave kid. I mean he really sucks it up and does what needs doing. Seriously, I saw him stare down a tiger once.
But bravery can only go so far. We laid him on the bed and everyone but me put on lead aprons. Only one parent could be present so I had to leave and watch (and hear) from the other room. I saw them lay little Nate down and watch them pull the machine over him while Annie held him down. Next they tried to feed him barium through a bottle, he refused. Atta boy Nate! This whole process had been inefficient and absurd at times so I was happy to see my boy spit that barium back out. Next they tried to squirt it into his mouth with a water dropper. He'd seen his cousin Sammy do this thousands of times so he knew the drill and swallowed a little. I watched the x-ray pictures and saw the barium trickle into his stomach. But it wasn't enough.
Finally they had to create a more diluted barium concoction that was sweeter and feed that to him. Nate accepted this offering, but just barely. They laid him back down on the table and pinned him down again. At this point I began to hear his crying. Not loud annoyed crying but moderate cries of sadness. Fed up of being held down, poked and prodded for over an hour he finally lost it. They finished up finally (after they stopped to chat with a doctor about a room scheduling conflict while Nate was in the middle of the process) and I was free to enter the room.
Nate lay on the bed and I went to pick him up. He was a picture of patheticness. He had barium all down his face and his hair was matted down from barium that had spilled and dried on a large portion of his head. Fresh tears made a line from his eyes to his ears. He had barium on his hands and his shoulders and his face and he was exhausted. There was Nathaniel in naught but his diapers covered in barium and tears.
But he is a brave kid. It takes a lot of poking and prodding before he starts to lose it. Even then you see his bottom lip push out and tears well up and he fights them back. He'll do that for another couple of minutes before he actually loses it. He is brave indeed. Seriously, I saw him smack Mike Tyson in the mouth once.
We still don't know what will happen with him or what his problem is but hopefully we'll know soon. Until then, here's Nate sitting.
Wednesday, October 6, 2010
October pics
Nate got 5 vaccinations 2 days ago and hasn't quite recovered. He's been pretty tired the last two days.
This is how he hides his earphones when he sits in the back of class.
Its his homemade eating poncho. His eating is very messy. When he eats it it really isn't any different than making a smoothie, but instead of using a lid to cover the blender so the smoothie doesn't fly everywhere he uses his face. Ergo, the poncho.
Oooooooo, scary! He wanted some Halloween pictures of him looking like a zombie/skeleton in his new PJs. Note the careful attention to detail as Nate made his hair look more zombie-ish.
Sunday, October 3, 2010
Pumpkin
Some news. Nate turned six months this past week. 6 months! The only reason its not sad that he is growing so fast is because he isn't actually growing much at all. Nate still looks like he is 3 months old. We have a doctors appointment tomorrow and hopefully the doctor can shed some light on why he has only gained 3 or 4 pounds in 3 months or so. I think its somehow tied to his habit of not ever wanting to eat.
In other news I have found myself in the enviable position of having paid, temporary, part-time work. The details are not solid yet so I won't divulge too much other than to say it involves earning money. To be honest when he offered me the job I said yes shook the man's hand and left. I imagine he'll get back to me with the details.
In other news I have found myself in the enviable position of having paid, temporary, part-time work. The details are not solid yet so I won't divulge too much other than to say it involves earning money. To be honest when he offered me the job I said yes shook the man's hand and left. I imagine he'll get back to me with the details.
Sunday, September 26, 2010
Monster Hunters
Lately Nathaniel has become a chatter box, a smiley chatter box. The problem is he gets too distracted when there are people other than me and Annie watching or when we put a camera on him. This means there is no evidence of Nathaniel's laughter and smiles.
Nate's laugh is like Bigfoot. Awesome, rare to catch on film and (if Jack's Links commercials are accurate) devoted to the sweet taste of beef jerky. So any time we can catch him on film laughing we post it. Today as we readied ourselves for a Sunday walk I decided to give it a try since he had been in such a great mood all day. The following document is what transpired. This is not faked or simulated and it is delightful.
Nate's laugh is like Bigfoot. Awesome, rare to catch on film and (if Jack's Links commercials are accurate) devoted to the sweet taste of beef jerky. So any time we can catch him on film laughing we post it. Today as we readied ourselves for a Sunday walk I decided to give it a try since he had been in such a great mood all day. The following document is what transpired. This is not faked or simulated and it is delightful.
Sunday, September 19, 2010
Pool
We went swimming a few times this month. At first we swam and Nate watched. Little did we know, we were leaving him out of the fun he wanted to be apart of. Nathaniel doesn't like cold things. He won't eat anything that isn't at least room temperature, so imagine our surprise when had a blast playing in the pool. And when I say a blast I mean mild fun. He did like it though. He kicked and laughed and had a great time. He loved being propelled through the water and that feeling of a hundred pound diaper.
Today, however, we found out something Nate doesn't like. Our primary is preparing for the primary program and I had Nate with me so I could show him the ropes. Knowing he'd be in primary soon I wanted to point out the do's and don'ts. Ya know, what social mistakes to stay away from and which girls aren't worth the trouble, things like that.
As the kids practiced their songs, and by practice I mean stood around confused and tired while mouthing some lyrics here and there, Nate sat in silence and seemed to enjoy the music. That is until a certain song. As the kids began to sing the haunting and cult-like "Follow the Prophet" Nate began to cry. I don't blame him, what a bizarre song to have a bunch of kids sing. If anti-mormon groups want to stick it to us they could just film a primary singing that song and even I might be convinced we're a dangerous cult.
Anyway, to the video of Nate.
Today, however, we found out something Nate doesn't like. Our primary is preparing for the primary program and I had Nate with me so I could show him the ropes. Knowing he'd be in primary soon I wanted to point out the do's and don'ts. Ya know, what social mistakes to stay away from and which girls aren't worth the trouble, things like that.
As the kids practiced their songs, and by practice I mean stood around confused and tired while mouthing some lyrics here and there, Nate sat in silence and seemed to enjoy the music. That is until a certain song. As the kids began to sing the haunting and cult-like "Follow the Prophet" Nate began to cry. I don't blame him, what a bizarre song to have a bunch of kids sing. If anti-mormon groups want to stick it to us they could just film a primary singing that song and even I might be convinced we're a dangerous cult.
Anyway, to the video of Nate.
Sunday, September 12, 2010
A Week in Nathaniel
I was going to post a video but then the programmed crashed and I lost interest so for now you get pictures of things Nate did this week
He pooped
He loves to read stories and turn the pages.
He was in his diapers a lot.
And he went swimming on Labor Day and loved it.
He pooped
He loves to read stories and turn the pages.
He was in his diapers a lot.
And he went swimming on Labor Day and loved it.
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