We hit up the cabin again this New Year's weekend. New Year's Eve was spent at a friend's house, but we left town yesterday and today. The highlight of the weekend (besides my new remote controlled helicopter) for Julia was sliding around on the ice. My legs are tired.
p.s. turn up your volume to hear Julia at the far side of the pond and click the snowflake icon on the video
02 January 2012
01 January 2012
Happy New Year
Normally New Year celebrations don't mean much to me. It's not like in the past I've been that excited about a new year or happy that another one has passed. This time was a little bit different than normal for me though. We didn't do anything extraordinary to celebrate - in fact, we didn't even stay up late. If I remember correctly, we went to bed when we always do, when the first number on the clock is a nine.
There's something about 2012 that seems special. I don't know what it us yet. Maybe it's because this is the year the world is going to end. I'm just kidding. It's not so much that I'm looking forward to this year, it's more that I'm glad 2011 is finally over. Stacey and I both agree that 2011 was the hardest year of our life. We hope we never have to live through another 2011 again.
Part of the hardship was expected and due to the choices we made, the other part completely unexpected. Things were a little rough since I had decided to take time off of work. We chose to have no money in the short run so that we could have much more in the long run. Not having money pretty much sucked. However, looking back that was just something we needed to do until Jonathan got to a point where he was more self-reliant. His medical issues extended my time off, but we got through it somehow.
Obviously, the hardest part about 2011 was dealing with Jonathan's medical challenges. Two weeks in the hospital, months of vomiting, countless trips to different doctors, and trying hard to keep him fed through his tube and strict feeding schedule took its toll. Others will never quite grasp how hard this was on us day in, day out. It's probably similar to those who have never had kids not having any idea how hard it is until they have kids themselves. Of course, the threat of massive medical bills only made the experience worse.
We also went from having one kid to having two. Although Jonathan was born the prior year, by 2011 he was seven months old and therefore in full-on kid mode. We now definitely had two kids to keep an eye on and not just one and a sack of potatoes. He was also so much different from Julia. It was an adjustment from the dainty, shy, and precise Julia to now having a wild little monkey boy on our hands.
They say that starting a new job is one of the top stresses in life. I was doing phone and person interviews in 2011 while we were in the hospital. I took a position, then quickly realized it wasn't a good fit and a poor arrangement by the second week in. After that, I almost took another position if not for a very timely letter from the IRS reminding me about self-employment taxes and insurance. Eventually I landed where I was supposed to (there's no other way to look at it). However, I still had to start and learn a new job in 2011. I'm still learning, but at least the environment is conducive.
I'm beginning to see the fruit of our labor in 2011 though. So, in some ways it makes it all seem worth it. Maybe this is just life. Maybe this is just our first taste of it. I don't know. All I know is that we're glad 2011 is over. If 2012 isn't going to be much better, then I say being on the end of the world.
There's something about 2012 that seems special. I don't know what it us yet. Maybe it's because this is the year the world is going to end. I'm just kidding. It's not so much that I'm looking forward to this year, it's more that I'm glad 2011 is finally over. Stacey and I both agree that 2011 was the hardest year of our life. We hope we never have to live through another 2011 again.
Part of the hardship was expected and due to the choices we made, the other part completely unexpected. Things were a little rough since I had decided to take time off of work. We chose to have no money in the short run so that we could have much more in the long run. Not having money pretty much sucked. However, looking back that was just something we needed to do until Jonathan got to a point where he was more self-reliant. His medical issues extended my time off, but we got through it somehow.
Obviously, the hardest part about 2011 was dealing with Jonathan's medical challenges. Two weeks in the hospital, months of vomiting, countless trips to different doctors, and trying hard to keep him fed through his tube and strict feeding schedule took its toll. Others will never quite grasp how hard this was on us day in, day out. It's probably similar to those who have never had kids not having any idea how hard it is until they have kids themselves. Of course, the threat of massive medical bills only made the experience worse.
We also went from having one kid to having two. Although Jonathan was born the prior year, by 2011 he was seven months old and therefore in full-on kid mode. We now definitely had two kids to keep an eye on and not just one and a sack of potatoes. He was also so much different from Julia. It was an adjustment from the dainty, shy, and precise Julia to now having a wild little monkey boy on our hands.
They say that starting a new job is one of the top stresses in life. I was doing phone and person interviews in 2011 while we were in the hospital. I took a position, then quickly realized it wasn't a good fit and a poor arrangement by the second week in. After that, I almost took another position if not for a very timely letter from the IRS reminding me about self-employment taxes and insurance. Eventually I landed where I was supposed to (there's no other way to look at it). However, I still had to start and learn a new job in 2011. I'm still learning, but at least the environment is conducive.
I'm beginning to see the fruit of our labor in 2011 though. So, in some ways it makes it all seem worth it. Maybe this is just life. Maybe this is just our first taste of it. I don't know. All I know is that we're glad 2011 is over. If 2012 isn't going to be much better, then I say being on the end of the world.
30 December 2011
Talking In Your Sleep
Over the past few weeks Jonathan has really started to talk. He knows a ton of words when we say them, but he's only saying a few of them. He'll say a few things like "ball", "uh-oh", "big sis", "Dadda" and make a barking sound for a dog. It's great fun to hear him say new words.
He started making a few noises last night at about three in the morning. Since we're still using a monitor, we can hear everything that's going on in his room. There were a few noises and then a distinct "uh-oh" came across the airwaves. It was pretty funny. I thought something might have gone wrong, but since everything was fine I'm pretty sure he was just dreaming and talking in his sleep...
He started making a few noises last night at about three in the morning. Since we're still using a monitor, we can hear everything that's going on in his room. There were a few noises and then a distinct "uh-oh" came across the airwaves. It was pretty funny. I thought something might have gone wrong, but since everything was fine I'm pretty sure he was just dreaming and talking in his sleep...
27 December 2011
Eighth Anniversary
Is it just me, or does the word "eighth" spelled out completely mess with your head? It looks like a typo.
Anyway, that about sums up everything we did this year for our anniversary. Between birthdays and holidays and family in town, our anniversary doesn't really get celebrated on the day we were married. We have to celebrate it sometime later, like on our half-anniversary on June 27th. I like that idea better too - there's so much more you can do at the end of June then at the end of December.
Eight years has gone by really fast! We're already talking about trying to do something special in 2013 to celebrate the tenth. It's probably going to involve a vacation somewhere exotic, like Milwaukee (kidding).
I love you Stacey (sorry folks, this is where it ends - no mushy stuff online).
Anyway, that about sums up everything we did this year for our anniversary. Between birthdays and holidays and family in town, our anniversary doesn't really get celebrated on the day we were married. We have to celebrate it sometime later, like on our half-anniversary on June 27th. I like that idea better too - there's so much more you can do at the end of June then at the end of December.
Eight years has gone by really fast! We're already talking about trying to do something special in 2013 to celebrate the tenth. It's probably going to involve a vacation somewhere exotic, like Milwaukee (kidding).
I love you Stacey (sorry folks, this is where it ends - no mushy stuff online).
25 December 2011
Merry Christmas
This was the first year that we opened presents at our house on Christmas morning. We wanted to start our own Christmas morning traditions now that Julia is old enough. Like most people that have grandparents in town, we had two different present opening sessions. We held ours first thing in the morning and made it over the river and through the woods by late morning.
Both of the kids woke up a little later then usual, so we decided to have our pancake, coffee and hot chocolate breakfast before opening presents. Both kids were excited about their gifts, and although we tried to keep the opening somewhat organized, the wrapping started flying simultaneously and I missed most of Julia's openings. It was fun to let them go after it for once, but for the most part as they get older we'll try to slow it down so we can watch their reactions.
Opening presents - showing me his new car - playing with the box for awhile before opening it
Playing with the cars before I was even able to assemble his toy - once again, using the box as a toy - Julia peering through the hole while both of the kids enjoyed Jonathan's new toy
Everyone enjoying their new chair/turtle shell/top Daddy spins me in at the Grandparent's
Jonathan making engine sounds (cheeks puffed) as soon as he realizes his latest gift is a dump truck - a team effort to remove the pesky ribbon found on all gifts - Julia taking her new sleeping bag for a test snooze
Both of the kids woke up a little later then usual, so we decided to have our pancake, coffee and hot chocolate breakfast before opening presents. Both kids were excited about their gifts, and although we tried to keep the opening somewhat organized, the wrapping started flying simultaneously and I missed most of Julia's openings. It was fun to let them go after it for once, but for the most part as they get older we'll try to slow it down so we can watch their reactions.
Opening presents - showing me his new car - playing with the box for awhile before opening it
Playing with the cars before I was even able to assemble his toy - once again, using the box as a toy - Julia peering through the hole while both of the kids enjoyed Jonathan's new toy
Everyone enjoying their new chair/turtle shell/top Daddy spins me in at the Grandparent's
Jonathan making engine sounds (cheeks puffed) as soon as he realizes his latest gift is a dump truck - a team effort to remove the pesky ribbon found on all gifts - Julia taking her new sleeping bag for a test snooze
23 December 2011
21 December 2011
Next Steps For Jonathan
We had another followup appointment with Dr Yazdi today. Things haven't been progressing that well, so we went to the appointment hoping for some answers. Although we've tried our best, we're barely keeping up with his caloric requirements. We seem to have hit a ceiling that we can't get past...so we were ready to take the next step. To be honest, we were expecting Jonathan's doctor to tell us the same thing we have heard over and over for the past few months, that is, "feed him more". Our opinion going into the appointment was that something needed to change because the current approach wasn't working.
The appointment went pretty well. Although we've been barely keeping up, Jonathan had gained a pound over the past two months and grown a couple of inches, bringing him up to 18.5 pounds and 30 inches. I don't know if something finally clicked in the doctor's mind, but he took an entirely different approach this time around and came across as much more proactive. He seemed to agree with us, and finally gave us a plan and next steps that we could take to help Jonathan.
The doctor is giving us two weeks to see how well Jonathan does when we push the rate of feeding overnight up to 55 mL/hr - about a 20% increase. Right now he's on a constant drip overnight for 10 hours. We've had good luck with the drip, so we're going to try to push that as high as possible. If that works, we should be able to meet our goal of 1000 calories per day. We're supposed to give him a call back in two weeks to talk about our progress.
If increasing him overnight doesn't work, then we're probably going to switch out the kind of button he has implanted. As a side note, we have an appointment with a different doctor in a few weeks to get a second opinion before we would make any changes. Right now his button empties directly into his stomach. This works well unless you have a case like ours where it appears that the stomach is the bottleneck. The other option is to get a GJ button, one that has two ports. One port empties into the stomach like we have now, but the second port via a balloon or tube empties below the stomach into the small intestine. We would use the second port into the intestine overnight, dripping the amount we need to past his stomach. During the day we'd still feed him into his stomach, but we'd always have the ability to get past the suspected bottleneck.
There are other advantages to doing this in addition to getting him the food he needs. First, it will help us narrow down what's going on. If dripping into the small intestine works well, then the stomach (motility) is the obvious culprit. It's just emptying too slow and not keeping up. If for some reason feeding him into his intestine still causes him to vomit, then we know he probably has some reflux (GERD) issues. We can only vomit food that's in our stomach, so if we're feeding him past the stomach and he starts vomiting, then we know things are moving in the wrong directly and going back up into his stomach. That is, his stomach can empty fast enough in theory, but things are backing up farther down his system and that is the real problem. I've talked to Stacey a few times about this idea in the past, considering her family history with intestinal problems. We'll see what happens if we go this route. Depending on the outcome, it could mean trips to see specialists for testing in other states.
One drawback to a GJ tube is that it would need to be replaced every three to four months. However, a second advantage of a GJ tube is that we could really start working on introducing solids during the day. We may be able to replace one day feeding with real food, and over time gradually replace all of the day feedings with solid food as he learns. I guess we have a few weeks to see how increasing his feeding overnight goes. At least we feel like we have have some options and some direction now.
The appointment went pretty well. Although we've been barely keeping up, Jonathan had gained a pound over the past two months and grown a couple of inches, bringing him up to 18.5 pounds and 30 inches. I don't know if something finally clicked in the doctor's mind, but he took an entirely different approach this time around and came across as much more proactive. He seemed to agree with us, and finally gave us a plan and next steps that we could take to help Jonathan.
The doctor is giving us two weeks to see how well Jonathan does when we push the rate of feeding overnight up to 55 mL/hr - about a 20% increase. Right now he's on a constant drip overnight for 10 hours. We've had good luck with the drip, so we're going to try to push that as high as possible. If that works, we should be able to meet our goal of 1000 calories per day. We're supposed to give him a call back in two weeks to talk about our progress.
If increasing him overnight doesn't work, then we're probably going to switch out the kind of button he has implanted. As a side note, we have an appointment with a different doctor in a few weeks to get a second opinion before we would make any changes. Right now his button empties directly into his stomach. This works well unless you have a case like ours where it appears that the stomach is the bottleneck. The other option is to get a GJ button, one that has two ports. One port empties into the stomach like we have now, but the second port via a balloon or tube empties below the stomach into the small intestine. We would use the second port into the intestine overnight, dripping the amount we need to past his stomach. During the day we'd still feed him into his stomach, but we'd always have the ability to get past the suspected bottleneck.
There are other advantages to doing this in addition to getting him the food he needs. First, it will help us narrow down what's going on. If dripping into the small intestine works well, then the stomach (motility) is the obvious culprit. It's just emptying too slow and not keeping up. If for some reason feeding him into his intestine still causes him to vomit, then we know he probably has some reflux (GERD) issues. We can only vomit food that's in our stomach, so if we're feeding him past the stomach and he starts vomiting, then we know things are moving in the wrong directly and going back up into his stomach. That is, his stomach can empty fast enough in theory, but things are backing up farther down his system and that is the real problem. I've talked to Stacey a few times about this idea in the past, considering her family history with intestinal problems. We'll see what happens if we go this route. Depending on the outcome, it could mean trips to see specialists for testing in other states.
One drawback to a GJ tube is that it would need to be replaced every three to four months. However, a second advantage of a GJ tube is that we could really start working on introducing solids during the day. We may be able to replace one day feeding with real food, and over time gradually replace all of the day feedings with solid food as he learns. I guess we have a few weeks to see how increasing his feeding overnight goes. At least we feel like we have have some options and some direction now.
20 December 2011
19 December 2011
Outside The Box
I love how little kids think, it's completely out of the box. Usually it's just funny and cute, but every once in awhile they come up with a legitimate idea worth trying. Julia did this the other day while we were watching the news. What made it even better was that her great idea was followed by a completely random, yet legitimate, alternative that reminded me she's still a little girl.
Overnight we received a decent amount of snow, so this morning I had to go outside and shovel our long driveway and sidewalk. Even though the snow was very dry and light, it still took me about 45 minutes to clear the entire area. By the way, a dead giveaway that you're not originally from the front range is if you own a snow blower. I'm not going to explain why - those who have lived here long enough know what I mean. Anyway, both kids kept their noses pressed against the sliding glass door, watching me as I shoveled the snow away.
Later that day I turned on the national news when I got home from work. Julia had apparently never seen a snow blower before, so when they showed a clip of people in the Midwest digging themselves out from the same storm I had to explain what she had just seen. I explained I don't have a snow blower, so I have to do it by hand with a shovel. Her response was, "but Dad, you have a LEAF blower. That could work!". I was very impressed with her idea, so I told her that I would give it a try the next time it snows. If the snow is as dry as it was this morning, a leaf blower might actually work.
After I praised her and told her that I would try it the next time it snowed, she came up with a backup plan. If the leaf blower didn't work, I could simply buy a bulldozer and use that to remove the snow. She had also seen that on the news. She assured me it would be OK since I could just park it outside. However, the model I purchase would need to have windshield wipers on it so I could see what I was doing.
Overnight we received a decent amount of snow, so this morning I had to go outside and shovel our long driveway and sidewalk. Even though the snow was very dry and light, it still took me about 45 minutes to clear the entire area. By the way, a dead giveaway that you're not originally from the front range is if you own a snow blower. I'm not going to explain why - those who have lived here long enough know what I mean. Anyway, both kids kept their noses pressed against the sliding glass door, watching me as I shoveled the snow away.
Later that day I turned on the national news when I got home from work. Julia had apparently never seen a snow blower before, so when they showed a clip of people in the Midwest digging themselves out from the same storm I had to explain what she had just seen. I explained I don't have a snow blower, so I have to do it by hand with a shovel. Her response was, "but Dad, you have a LEAF blower. That could work!". I was very impressed with her idea, so I told her that I would give it a try the next time it snows. If the snow is as dry as it was this morning, a leaf blower might actually work.
After I praised her and told her that I would try it the next time it snowed, she came up with a backup plan. If the leaf blower didn't work, I could simply buy a bulldozer and use that to remove the snow. She had also seen that on the news. She assured me it would be OK since I could just park it outside. However, the model I purchase would need to have windshield wipers on it so I could see what I was doing.
16 December 2011
Bon Voyage Daddy
Every morning Julia and Jonathan give me hugs and kisses before I leave for work. Just like his sister, Jonathan loves to stand at the sliding glass door in the kitchen and wave goodbye as I back out of the garage past him. Then, when I'm out of sight, he runs as fast as he can to the front of the house to wave goodbye from the window next to the front door. I usually have to wait for several seconds in the middle of the street for him to make it to the other side of the house.
This morning I got ready a little bit faster then usual, so I decided to head into work a little bit early. It was still dark outside when I left. As expected, Jonathan stood at the side of the house and waved goodbye. I backed out into the street and sat there for a few seconds waiting to see if he would make it to the front door window. Eventually I saw the blinds moving and light coming from inside the house. As I mentioned, it was still dark outside so I couldn't make anything out other then what was farther inside the house then where Jonathan was standing. As he pulled the blinds back from the window, all I could see was a dark, round shape that looked like the very top of his head lingering above the window opening and a silhouetted little hand waving goodbye back and forth in the shadows. The back lighting in the house perfectly outlined his little hand flip-flopping back and forth in the air, wishing me a good day.
This morning I got ready a little bit faster then usual, so I decided to head into work a little bit early. It was still dark outside when I left. As expected, Jonathan stood at the side of the house and waved goodbye. I backed out into the street and sat there for a few seconds waiting to see if he would make it to the front door window. Eventually I saw the blinds moving and light coming from inside the house. As I mentioned, it was still dark outside so I couldn't make anything out other then what was farther inside the house then where Jonathan was standing. As he pulled the blinds back from the window, all I could see was a dark, round shape that looked like the very top of his head lingering above the window opening and a silhouetted little hand waving goodbye back and forth in the shadows. The back lighting in the house perfectly outlined his little hand flip-flopping back and forth in the air, wishing me a good day.
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