Over the past month or so we've reached a plateau with Jonathan. We had been making steady progress, peaking at seven ounces four times a day only to settle far below that amount today. We've been struggling to avoid a day where one feeding doesn't come back up. On the days we've been successful, it's only because we've decreased the amount we've fed him at the end of the day. Right now and over the past few weeks he's plateaued at 16.5 pounds. To even be in the fifth percentile, he'd have to weigh a little over 20 pounds, or about 25% more. We're probably only averaging caloric intake in the 600s when the doctor is wanting it in the 800s or 900s.
I'll say it again for those of you don't remember: To the best of our knowledge, Jonathan is suffering from a condition called gastroparesis. His stomach is not able to empty fast enough to keep up with the demands of his body. Naturally, he's not growing since the bottleneck is restricting his intake of calories. Imagine your body needing food but not getting it. Based on the tests and studies that were done, everything looks fine. That's the frustrating part, because everything is not fine. What's probably happening is that the part of the nervous system that helps push food through isn't firing properly.
What this means is that we have to hold him four times a day, roughly 45 minutes at a time while the pump puts food in his stomach. We have a kid carrier, but even so this process takes up hours of the day. We can't exactly tell how full he is at any one time, so if we pump too much into him he'll just throw up and we'll lose everything. If we go the conservative route so he holds it down, he's getting some but not enough. This isn't exactly what we had in mind for our life. Our hope is that this is something that isn't severe and that can be managed as he grows older. Either way we're slowly starting to realize that we may have a "special needs" child on our hands. I'm not sure people realize how much of a burden it is, having to spend 3-4 hours of your day just to feed your child only for it to probably end up all over your clothes or your house. That alone isn't a big deal, but add to that a three year old girl, a house that needs to be taken care of, both of us are soon to be working (we don't have a choice right now), and life is pretty much all about work and no play.
We've tried our best, but we're at a point now where this is no longer good enough. Something has to change, whether it be an additional surgery, different medication (few to choose from), a different type of food, etc. A simple follow up appointment with the gastroenterologist this week isn't going to cut it. We're going to have to schedule a time to sit down and ask questions, discuss options, and figure out the next steps. We may need to seek a second opinion in Denver. There is so much we don't know.
We are probably going to push for additional and duplicate tests, just to confirm that the results in the hospital are still valid. What isn't adding up is that he's supposed to be normal and his emptying time barely normal. If that really were the case, then he should also be able to eat/digest the normal amount of calories required for a child his size. Because he can't, either the test ranges for normal are off or he really isn't normal. Even if we do confirm what we're experiencing (an abnormal test result), what exactly are the options? In some ways I almost hope the results from a second test come back abnormal, just to prove what we're experiencing. Also, that might alleviate certain goals or change the treatment strategy altogether.
At this point we feel like another quick visit to the doctor resulting in a new "target number" isn't what Jonathan or we need. We're really at a point where we have gotten him this far (kept him going) but something needs to change. Based on what we now know, we can't just continue the same old drill and not do something different. I just don't think this is working anymore. We need to take it to the next level, for Jonathan's and our sake both.
31 July 2011
30 July 2011
Little Troublemaker
He's into anything and everything. Should I lick my finger covered in dirt? Of course. Knock a few water bottles down? Absolutely. Pull the laptop cord and think about putting in my mouth? Delicious.
28 July 2011
Real Compassion
Today I got a call from the HR department at Compassion. They want to offer me the position pending a background and reference check. The HR rep jokingly said it was just to make sure I didn't have a warrant out for my arrest in Florida. My response was that if it's Florida that they are checking, then everything should come back clean. Next week everything should be formalized and I will officially be offered the Managerial Accountant job.
Is it just a coincidence that the day after I left Early Connections this job was advertised? After all the things that happened to get to this point, it's hard to see it that way. I think that this current phase of life has really made us appreciate having a good job with benefits and also what Compassion does around the world. Our family situation, albeit mainly due to personal decisions and minor in comparison, seems to have enough parallels with the mission of Compassion to have gotten my attention. At the very least, I am excited to work at a place that I can completely support. Up to this point in my life, that hasn't been the case.
This couldn't have come at a better time. I'll probably start sometime around the second or third week of August, if I had to guess. That will put my time off at exactly one year. Considering everything going on with Jonathan's medical issues, related bills, and our family in general, this was about as long as I could have pushed not working. Looking back, we'll probably conclude that the timing was a bit too close for comfort (we're on borrowed time already), but hopefully still see this past year as memorable and worthwhile. You might think that not working is all rainbows and unicorns, but Stacey and I have both given up a lot to do this. I think time will prove it was a good decision, despite the bumps along the way.
Is it just a coincidence that the day after I left Early Connections this job was advertised? After all the things that happened to get to this point, it's hard to see it that way. I think that this current phase of life has really made us appreciate having a good job with benefits and also what Compassion does around the world. Our family situation, albeit mainly due to personal decisions and minor in comparison, seems to have enough parallels with the mission of Compassion to have gotten my attention. At the very least, I am excited to work at a place that I can completely support. Up to this point in my life, that hasn't been the case.
This couldn't have come at a better time. I'll probably start sometime around the second or third week of August, if I had to guess. That will put my time off at exactly one year. Considering everything going on with Jonathan's medical issues, related bills, and our family in general, this was about as long as I could have pushed not working. Looking back, we'll probably conclude that the timing was a bit too close for comfort (we're on borrowed time already), but hopefully still see this past year as memorable and worthwhile. You might think that not working is all rainbows and unicorns, but Stacey and I have both given up a lot to do this. I think time will prove it was a good decision, despite the bumps along the way.
27 July 2011
One Year Ago
I ran across this video yesterday and realized that I never posted it. Check out the haircut (she had just taken a nap though)! This was too funny not to post...
25 July 2011
When It Rains
I haven't been that motivated to post lately, mainly because we have a lot going on...and yet, nothing is going on. I've also decided that reading at night seriously detracts from my time available for this blog.
Good news though. Another position (Accounting) is on the horizon at El Paso Corp, one of North America's largest independent natural gas producers. Two friends currently work there and one is also a former coworker. Considering I would be working alongside my former coworker and have the same boss, I'd say he's a pretty good reference. Also, there is a very small chance that I could return to Focus in another role. That position probably won't pay enough, but it's good to have options.
Once again, these things seem to come at me in groups of three. This time I really feel like one of them will work out. All of these options are pretty good and I don't have the luxury to be picky anymore. There is no turning back this time, no matter what.
Good news though. Another position (Accounting) is on the horizon at El Paso Corp, one of North America's largest independent natural gas producers. Two friends currently work there and one is also a former coworker. Considering I would be working alongside my former coworker and have the same boss, I'd say he's a pretty good reference. Also, there is a very small chance that I could return to Focus in another role. That position probably won't pay enough, but it's good to have options.
Once again, these things seem to come at me in groups of three. This time I really feel like one of them will work out. All of these options are pretty good and I don't have the luxury to be picky anymore. There is no turning back this time, no matter what.
22 July 2011
21 July 2011
Compassion Interview
On Tuesday morning I returned home from my morning jog and was shocked to find a voice mail waiting for me on my phone from Compassion. When I looked at my phone it said I had a missed call and had a voice mail from a 487-XXXX number. I didn't recall who that was, but I knew it was associated with something job related. I listened to the message and couldn't believe what I heard. The position that I had applied for (Managerial Accountant), turned down, then called back to request to be added back into the pool of candidates was still open. They had continued with the final round of interviews that I was scheduled to attend, but the job offer was turned down by their candidate of choice. They still wanted to talk to me. I had written this opportunity off completely.
Later on that day I discovered from an "informant" that the person that was offered the job was someone I knew and had worked with at Focus. In fact, he's still working there right now. Talk about a small world. It only took me a little bit of time to realize that I should call him up to talk about the interview and get some inside information so that I could have as much of an advantage as possible. Insider trading comes to mind. In the end, my experience was slightly different. It helped with the comfort level and confidence going in, but the process and questions asked weren't anything you wouldn't expect to be asked in an interview.
I think that the interview went pretty well. I feel like I gave some good answers while also making some personal connections in terms of personality similarities, interests, etc, with the people on the team. I think where that will help is that it provided a glimpse of what it would be like to work together, since even though it is a job people don't talk about work every minute of every day. At first I met for an hour with a team of three people comprised of two people I'd be working for and a peer of this position.The next hour was spent one on one with the hiring manager. The third and final hour was spent with two other people I'd be supporting on the team and the representative from HR. By the end of it I was pretty hungry and tired.
I should find out something in about two weeks. It's going to take a little longer then usual because of some changes going on and the schedule of the hiring manager. If it really is only down to me and one other person as I was led to believe, I probably have a pretty good shot at this position considering how the interview went.
What has been pretty amazing about the entire process is how it has happened. It's been a relative mess, but the door (for some reason) is still open. I saw this position advertised the very next day after I left Early Connections. Because of the nature of how the position with Mario evolved, this was the only job I applied for in a span of about a month. It was like it was just sitting there, waiting for me to apply. When I turned the interview down, we had the week from hell where we realized I couldn't take the position with Mario. I was out and then I wanted back in. Then, it was almost as if my former co-worker fended off the other candidates only to keep the door open for me after he turned it down. Finally, on my way to the interview I was passed by three cars. One car was a white Toyota pickup just like mine, with Air Force plates, and with a topper from Meili's Truck Tops - the same place in Spokane I purchased my cover from. The second car that passed me had CU plates - the same ones I used to have on my truck from my alma mater. He was followed closely behind by a third car with a bumper sticker of the Hawaiian Islands. I don't know about you, but I thought that was pretty weird to see representations of much of my past all converge for a second or two on the way to the interview. Let's also not forget that Michelle is coming into town to help us out with the kids during her summer break. The dates? Probably the exact week or two that I would start this position and Jules starts pre-school. Now that's what I call good timing.
Later on that day I discovered from an "informant" that the person that was offered the job was someone I knew and had worked with at Focus. In fact, he's still working there right now. Talk about a small world. It only took me a little bit of time to realize that I should call him up to talk about the interview and get some inside information so that I could have as much of an advantage as possible. Insider trading comes to mind. In the end, my experience was slightly different. It helped with the comfort level and confidence going in, but the process and questions asked weren't anything you wouldn't expect to be asked in an interview.
I think that the interview went pretty well. I feel like I gave some good answers while also making some personal connections in terms of personality similarities, interests, etc, with the people on the team. I think where that will help is that it provided a glimpse of what it would be like to work together, since even though it is a job people don't talk about work every minute of every day. At first I met for an hour with a team of three people comprised of two people I'd be working for and a peer of this position.The next hour was spent one on one with the hiring manager. The third and final hour was spent with two other people I'd be supporting on the team and the representative from HR. By the end of it I was pretty hungry and tired.
I should find out something in about two weeks. It's going to take a little longer then usual because of some changes going on and the schedule of the hiring manager. If it really is only down to me and one other person as I was led to believe, I probably have a pretty good shot at this position considering how the interview went.
What has been pretty amazing about the entire process is how it has happened. It's been a relative mess, but the door (for some reason) is still open. I saw this position advertised the very next day after I left Early Connections. Because of the nature of how the position with Mario evolved, this was the only job I applied for in a span of about a month. It was like it was just sitting there, waiting for me to apply. When I turned the interview down, we had the week from hell where we realized I couldn't take the position with Mario. I was out and then I wanted back in. Then, it was almost as if my former co-worker fended off the other candidates only to keep the door open for me after he turned it down. Finally, on my way to the interview I was passed by three cars. One car was a white Toyota pickup just like mine, with Air Force plates, and with a topper from Meili's Truck Tops - the same place in Spokane I purchased my cover from. The second car that passed me had CU plates - the same ones I used to have on my truck from my alma mater. He was followed closely behind by a third car with a bumper sticker of the Hawaiian Islands. I don't know about you, but I thought that was pretty weird to see representations of much of my past all converge for a second or two on the way to the interview. Let's also not forget that Michelle is coming into town to help us out with the kids during her summer break. The dates? Probably the exact week or two that I would start this position and Jules starts pre-school. Now that's what I call good timing.
17 July 2011
WWC Final Twitter Style
00:00 - Watching the Stars and Stripes being paraded out for a World Cup Final (even if women's)...priceless
00:00 - Trying not to laugh as the shortest player from Japan is barely taller then the boy in front of her
05:00 - Can't believe we almost score in the first 45 seconds! We've looked good so far - lots of possession
10:00 - Should have scored at eight minutes - inches wide by Lauren Cheney! We're doing well - lots of space
15:00 - We've had two great chances coming down our left side. Two (four in total) more chances wasted
20:00 - ANOTHER great chance down the left. Rapinoe is causing them a lot of trouble
25:00 - Shots: USA 10, Japan 2. We're averaging a shot every 150 seconds. Things seem under control now
28:00 - WAMBACH LEFT FOOTED ROCKET OFF THE CROSSBAR! What a rip! Totally one-sided now
30:00 - Almost got burned. That's how fast this game can change. We were lucky the shot was poor
35:00 - OK, this is getting scary. Cheney missed a wide open header. This could have been over already
45:00 - Halftime. Well, that was a pretty good first half performance. All we didn't do was put the ball into the back of the net. Japan has shown how dangerous they can be if we let them control the game. I like the strategy of pressuring them when they have the ball. It has really disrupted their game. I don't think there is anything else that needs to be done differently in the second half except for our finishing. The longer we let them hang around, the more likely they are to burn us
48:00 - ALEX MORGAN HITS THE POST! Is this one of those games??? We've got to get one of these
60:00 - So weird. Poor in the semis versus France, yet scored three. Tonight, best performance and no goals
68:00 - GOAL!!! USA!!! 22-year old Alex Morgan puts the USA ahead! What a counter-attack strike! Beautiful play and shot. Nice left foot into the side corner. THAT was a long time coming! FYI, she was born in 1989. Totally
75:00 - Last quarter of the match. Do we make any changes? I'm not so sure unless someone seems tired
80:00 - Goal Japan. Unbelievable. What a mistake to clear it back to the center five feet from goal. Just like I thought, all it took was one mistake and they scored. So frustrating. Game on AGAIN. Unbelievable
90:00 - End of regular time. Well, 30 more minutes to be played. Let's hope we can score in ET again like we did against Brazil. This game can be so cruel. I think that as this game has gone on, the more even it has become. We still have the best chance to win in my opinion, but you just never know in this game
103:00 - GOAL!!! WAMBACH FROM MORGAN!!! 2-1 USA!!! She's now scored 4 games in a row with her head. BTW, the injury at half that brought Morgan into the game has proved very fortunate. Need to hold this
111:00 - Heart attack time. A handful of errors almost cost us there. We're so close to number three...
115:00 - We need just need to keep possession and slow this game down. Only need to kill off five more minutes. Good grief. Another chance by Japan that almost went in. Rampone with the clearance off the line
116:00 - Goal Japan. I can't believe what I'm watching. Good effort but it deflected in off a USA player. This is just like the Brazil game except that the roles have been reversed. 2-2 - only four minutes from more PKs
119:00 - Wambach should have ended it there! Now a red card for Japan! Probably too late to effect anything
120:00 - Could have scored from the foul. So close! Well, we're headed to PKs just like against China in 1999
End of game - Japan wins on PKs. What a heartbreaking loss. I knew I had a bad feeling about how this game was progressing earlier on in the match. We let this one go. Well, I guess this WAS about destiny, just for Japan. So against the run of play. I can't believe we didn't win this game.
00:00 - Trying not to laugh as the shortest player from Japan is barely taller then the boy in front of her
05:00 - Can't believe we almost score in the first 45 seconds! We've looked good so far - lots of possession
10:00 - Should have scored at eight minutes - inches wide by Lauren Cheney! We're doing well - lots of space
15:00 - We've had two great chances coming down our left side. Two (four in total) more chances wasted
20:00 - ANOTHER great chance down the left. Rapinoe is causing them a lot of trouble
25:00 - Shots: USA 10, Japan 2. We're averaging a shot every 150 seconds. Things seem under control now
28:00 - WAMBACH LEFT FOOTED ROCKET OFF THE CROSSBAR! What a rip! Totally one-sided now
30:00 - Almost got burned. That's how fast this game can change. We were lucky the shot was poor
35:00 - OK, this is getting scary. Cheney missed a wide open header. This could have been over already
45:00 - Halftime. Well, that was a pretty good first half performance. All we didn't do was put the ball into the back of the net. Japan has shown how dangerous they can be if we let them control the game. I like the strategy of pressuring them when they have the ball. It has really disrupted their game. I don't think there is anything else that needs to be done differently in the second half except for our finishing. The longer we let them hang around, the more likely they are to burn us
48:00 - ALEX MORGAN HITS THE POST! Is this one of those games??? We've got to get one of these
60:00 - So weird. Poor in the semis versus France, yet scored three. Tonight, best performance and no goals
68:00 - GOAL!!! USA!!! 22-year old Alex Morgan puts the USA ahead! What a counter-attack strike! Beautiful play and shot. Nice left foot into the side corner. THAT was a long time coming! FYI, she was born in 1989. Totally
75:00 - Last quarter of the match. Do we make any changes? I'm not so sure unless someone seems tired
80:00 - Goal Japan. Unbelievable. What a mistake to clear it back to the center five feet from goal. Just like I thought, all it took was one mistake and they scored. So frustrating. Game on AGAIN. Unbelievable
90:00 - End of regular time. Well, 30 more minutes to be played. Let's hope we can score in ET again like we did against Brazil. This game can be so cruel. I think that as this game has gone on, the more even it has become. We still have the best chance to win in my opinion, but you just never know in this game
103:00 - GOAL!!! WAMBACH FROM MORGAN!!! 2-1 USA!!! She's now scored 4 games in a row with her head. BTW, the injury at half that brought Morgan into the game has proved very fortunate. Need to hold this
111:00 - Heart attack time. A handful of errors almost cost us there. We're so close to number three...
115:00 - We need just need to keep possession and slow this game down. Only need to kill off five more minutes. Good grief. Another chance by Japan that almost went in. Rampone with the clearance off the line
116:00 - Goal Japan. I can't believe what I'm watching. Good effort but it deflected in off a USA player. This is just like the Brazil game except that the roles have been reversed. 2-2 - only four minutes from more PKs
119:00 - Wambach should have ended it there! Now a red card for Japan! Probably too late to effect anything
120:00 - Could have scored from the foul. So close! Well, we're headed to PKs just like against China in 1999
End of game - Japan wins on PKs. What a heartbreaking loss. I knew I had a bad feeling about how this game was progressing earlier on in the match. We let this one go. Well, I guess this WAS about destiny, just for Japan. So against the run of play. I can't believe we didn't win this game.
16 July 2011
Splishy Splashy
The backyard patio doubles as a swimming pool foundation nicely. Jules and I spent about two hours in the pool this morning, mostly scooping out little bugs and the occasional cheddar bunny. If you'll notice in the pictures, Julia put on her swimsuit all by herself. Is the tag supposed to be in the front?
15 July 2011
Tree And Tree Years
Odd topic for a post, but the tree in our front yard is officially taller then the gutter above Julia's bedroom. I climbed out on the porch roof this morning to confirm.
I think the reason why it's a big deal to me is that the tree was half dead when we moved in. The entire main branch was dead, so I hacked it off and hoped for the best. By pulling back the grass, mulching the area around the trunk, and regular food/water, it's now the biggest on the block.
From top to bottom, left to right, I've posted pictures from 2006 - 2011. In the coming years I'm going to have to keep it trimmed and away from the house. This type of maple is supposed to grow about 40 - 50 feet tall and 20 - 30 feet wide. My guess is that it's only halfway done.
I think the reason why it's a big deal to me is that the tree was half dead when we moved in. The entire main branch was dead, so I hacked it off and hoped for the best. By pulling back the grass, mulching the area around the trunk, and regular food/water, it's now the biggest on the block.
From top to bottom, left to right, I've posted pictures from 2006 - 2011. In the coming years I'm going to have to keep it trimmed and away from the house. This type of maple is supposed to grow about 40 - 50 feet tall and 20 - 30 feet wide. My guess is that it's only halfway done.
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