Today we received a few of the results from some of the tests run on Jonathan last week. The good news is that Cystic Fibrosis and Malabsorption both came back negative. On to the next set of tests. Tomorrow we repeat the gastric emptying study that was done in the hospital about 9 months ago.
In a weird way I was hoping that the test for Malabsorption would yield a positive result. Don't get me wrong, I'm glad in the long run that it isn't, but that would have explained why he isn't gaining weight. Additionally, depending on the case, it's fairly easy to treat. Another way to look at it is that a positive result for Malabsorption would have been the quick and easy answer...
19 January 2012
18 January 2012
Fantasy Football
I've been officially voted in as the new commissioner of our fantasy football league at work. Actually, it's only because the previous commissioner left and I happened to be the only other person who had been a commissioner in the past. So, this means I've just completed my third year in a row as commissioner.
This new league is already running more smoothly. One of the items on my agenda was to create an inexpensive trophy or award that we could pass around each year. I came up with the plaque below. Not only did it cost me a mere $5.37 to make, I also got pizza out of the deal. Unfortunately, there wasn't enough space to list the runner up. Otherwise, my name would have been on this bad boy for 2011.
This new league is already running more smoothly. One of the items on my agenda was to create an inexpensive trophy or award that we could pass around each year. I came up with the plaque below. Not only did it cost me a mere $5.37 to make, I also got pizza out of the deal. Unfortunately, there wasn't enough space to list the runner up. Otherwise, my name would have been on this bad boy for 2011.
17 January 2012
Too School For Cool
I'm glad that we started Julia in preschool. She already knows how to write her name, the entire alphabet, and most of her numbers to twenty. Since she also is learning Spanish, she knows how to say a few colors in Spanish too. While we were playing yesterday she decided to count out loud to ten in Spanish. I had no idea she knew that.
Although she's shy at school, she still learns things quickly. I don't think she'll ever have a problem in school since she's so quick and also very inquisitive. I can already tell that she likes to learn, and combined with her patience and long attention span, I think school is going to be easy for her. The problem we'll probably face with her is having enough things to do so that she stays busy.
Although she's shy at school, she still learns things quickly. I don't think she'll ever have a problem in school since she's so quick and also very inquisitive. I can already tell that she likes to learn, and combined with her patience and long attention span, I think school is going to be easy for her. The problem we'll probably face with her is having enough things to do so that she stays busy.
15 January 2012
Master Bedroom
Since I had Monday of this week off from work (MLK), I was able to finish painting the crown molding in the master bedroom and master closet. I worked on it for nine hours straight. I probably could have finished sooner, but I'm consciously taking my time so that it turns out right. When I woke up Sunday morning I really didn't feel like painting. However, I psyched myself up and once again put in a full day's work.
In case you're wondering, I'm keeping a record of my progress on house projects on this blog so that I can look back with fond memories and say things like, "I remember when...", and, "can you believe that's what our house looked like back in the day?", and so forth.
In case you're wondering, I'm keeping a record of my progress on house projects on this blog so that I can look back with fond memories and say things like, "I remember when...", and, "can you believe that's what our house looked like back in the day?", and so forth.
11 January 2012
Second Opinion Appointment
Today we had our appointment with a different pediatric gastroenterologist to get a second opinion on Jonathan. This doctor works at Children's Hospital in Denver but regularly sees patients down here. As I've mentioned before, we sought a second opinion because it's something good to do but also because things haven't been moving along fast enough.
When we first met the new doctor I made it clear that we were here for a second opinion and looking to move forward with some testing so that we could confirm or rule out what was going on. Up to this point we haven't felt that we've actually determined what the root problem really is. I know we're trying to get Jonathan fed, but it's entirely possible that we could also rule out a lot of other issues at the same time. We've been wondering why we haven't moved forward all this time with testing, the feeding clinic, and other options.
We were impressed by the visit. Dr Waasdorp (a woman), was a much better communicator and explained many things to us. We have a followup appointment with her in eight weeks, so depending on how everything goes we could conceivably start working with her office instead. The outcome of the visit was very pleasing to us. Without going into too many details about the appointment, we've been scheduled for multiple tests in the coming weeks. In my opinion, the tests that we're having done should have been addressed at the very beginning. Although it's unlikely that Jonathan has something else major going on based on symptoms, we have never actually confirmed the assumptions with testing.
Since I am writing this a few days after the appointment, we've already tested Jonathan for Cystic Fibrosis. On Thursday of this week Stacey took Jonathan down to Memorial Central for a couple of hours to complete the test. As I mentioned above, the likelihood that Jonathan has CF is probably very low, but lack of growth is a main symptom associated with CF. One would think that this should have been ruled out upfront, but it hadn't been addressed until this point. The test method was actually very interesting. CF can be tested through our sweat. They essentially hooked up two electrodes to Jonathan's underarm on his forearm, and stimulated the sweat glands with an electrical current. They then put a patch over the area that contained a small tube that collects the sweat (like a large bandage), and then Stacey walked around the hospital with Jonathan for about an hour while his sweat was collected. We should know the results sometime early next week.
The other issue we addressed was malabsorption. This simple test involved us giving the lab a stinky diaper. Although Jonathan's diapers haven't been showing signs of obvious malabsorption, it's still possible. I recall reading something where a very small percentage of malabsorption cases can only be seen under a microscope and confirmed with testing. Although it's unlikely, we never actually tested for it in the past. If Jonathan hasn't been absorbing either fat, protein, and/or carbohydrates correctly, then that would obviously affect his growth. The good news is that malabsorption is simple to treat - all we would have to do is orally give him the enzymes that his body isn't producing and that should solve the problem. We'll find out the results of this test early next week too.
At the end of next week we're going to head back to Memorial to repeat the gastric emptying test that was done when we were in the hospital last spring. In the past we've asked Yazdi if we could repeat this test because of many reasons. He didn't feel like it was necessary, but we disagreed. The main assumption that we're basing our treatment on right now is that Jonathan's gastric emptying time is borderline normal. That's fine, except that when we did the test in the hospital Jonathan was just getting over being very sick involving his GI system. Secondly, we're not quite sure (can't remember exactly) whether or not Jonathan had already been given Reglan before the emptying test. We think he was, and since that drug is designed to speed up his system, it would mean the test results would be effectively inaccurate and would not have done under the appropriate circumstances. Repeating the test while not on any drugs and healthy should provide a more accurate result. If it confirms the first test, then we can rest assured. If things come back slower then before, then we can address the real issue moving forward instead of what we have been doing - operating with incorrect information. In the short term, if his system comes back too slow, Waasdorp said she would give us a prescription that should help and we can address that issue instead of assuming it's something that we should be able to work with.
The fourth test, schedule in two weeks, will be an upper GI and small series study. The link has a very good summary of the test. This test like the gastric emptying test, also involves swallowing something like barium and then watching what happens on an x-ray as is moves through the stomach and small intestine. An abnormal result can identify all sorts of things, including issues in the stomach or a narrowing of the "drain plug" at the bottom of the stomach, but also intestinal issues such as malabsorption, swelling or irritation of the small intestines, and tumors/ulcers. I'm glad that we're finally starting to examine these functions of the small intestine considering Stacey's family history with related issues like Crohn's, Celiac, etc.
Given all of these tests, we'll be a lot more informed about what the real problem really is. The final result from the appointment this week is that we're going to start the feeding clinic in March. We need to start the process of Jonathan eating on his own. As I've mentioned before, we'll work with him until he can eat enough on his own during the day and we'll just have to feed him at night. Eventually he'll be able to eat enough of the right foods on his own and we can stop using the pump altogether. Additionally, we'll have individual and groups sessions at the clinic, so we'll get to meet some of the other parents out there that are dealing with the same issues we are. I'm excited about Jonathan learning to eat on his own, since that will be the end of the feeding pump and tube. While there, we'll learn what he likes to eat and what would be an appropriate diet considering his issues and allergies.
We're very happy that we sought out a second opinion. Even if nothing comes back we'll at least know for sure what we're dealing with. It's time to start moving forward and we're glad that we found a doctor that agrees with us on this topic.
When we first met the new doctor I made it clear that we were here for a second opinion and looking to move forward with some testing so that we could confirm or rule out what was going on. Up to this point we haven't felt that we've actually determined what the root problem really is. I know we're trying to get Jonathan fed, but it's entirely possible that we could also rule out a lot of other issues at the same time. We've been wondering why we haven't moved forward all this time with testing, the feeding clinic, and other options.
We were impressed by the visit. Dr Waasdorp (a woman), was a much better communicator and explained many things to us. We have a followup appointment with her in eight weeks, so depending on how everything goes we could conceivably start working with her office instead. The outcome of the visit was very pleasing to us. Without going into too many details about the appointment, we've been scheduled for multiple tests in the coming weeks. In my opinion, the tests that we're having done should have been addressed at the very beginning. Although it's unlikely that Jonathan has something else major going on based on symptoms, we have never actually confirmed the assumptions with testing.
Since I am writing this a few days after the appointment, we've already tested Jonathan for Cystic Fibrosis. On Thursday of this week Stacey took Jonathan down to Memorial Central for a couple of hours to complete the test. As I mentioned above, the likelihood that Jonathan has CF is probably very low, but lack of growth is a main symptom associated with CF. One would think that this should have been ruled out upfront, but it hadn't been addressed until this point. The test method was actually very interesting. CF can be tested through our sweat. They essentially hooked up two electrodes to Jonathan's underarm on his forearm, and stimulated the sweat glands with an electrical current. They then put a patch over the area that contained a small tube that collects the sweat (like a large bandage), and then Stacey walked around the hospital with Jonathan for about an hour while his sweat was collected. We should know the results sometime early next week.
The other issue we addressed was malabsorption. This simple test involved us giving the lab a stinky diaper. Although Jonathan's diapers haven't been showing signs of obvious malabsorption, it's still possible. I recall reading something where a very small percentage of malabsorption cases can only be seen under a microscope and confirmed with testing. Although it's unlikely, we never actually tested for it in the past. If Jonathan hasn't been absorbing either fat, protein, and/or carbohydrates correctly, then that would obviously affect his growth. The good news is that malabsorption is simple to treat - all we would have to do is orally give him the enzymes that his body isn't producing and that should solve the problem. We'll find out the results of this test early next week too.
At the end of next week we're going to head back to Memorial to repeat the gastric emptying test that was done when we were in the hospital last spring. In the past we've asked Yazdi if we could repeat this test because of many reasons. He didn't feel like it was necessary, but we disagreed. The main assumption that we're basing our treatment on right now is that Jonathan's gastric emptying time is borderline normal. That's fine, except that when we did the test in the hospital Jonathan was just getting over being very sick involving his GI system. Secondly, we're not quite sure (can't remember exactly) whether or not Jonathan had already been given Reglan before the emptying test. We think he was, and since that drug is designed to speed up his system, it would mean the test results would be effectively inaccurate and would not have done under the appropriate circumstances. Repeating the test while not on any drugs and healthy should provide a more accurate result. If it confirms the first test, then we can rest assured. If things come back slower then before, then we can address the real issue moving forward instead of what we have been doing - operating with incorrect information. In the short term, if his system comes back too slow, Waasdorp said she would give us a prescription that should help and we can address that issue instead of assuming it's something that we should be able to work with.
The fourth test, schedule in two weeks, will be an upper GI and small series study. The link has a very good summary of the test. This test like the gastric emptying test, also involves swallowing something like barium and then watching what happens on an x-ray as is moves through the stomach and small intestine. An abnormal result can identify all sorts of things, including issues in the stomach or a narrowing of the "drain plug" at the bottom of the stomach, but also intestinal issues such as malabsorption, swelling or irritation of the small intestines, and tumors/ulcers. I'm glad that we're finally starting to examine these functions of the small intestine considering Stacey's family history with related issues like Crohn's, Celiac, etc.
Given all of these tests, we'll be a lot more informed about what the real problem really is. The final result from the appointment this week is that we're going to start the feeding clinic in March. We need to start the process of Jonathan eating on his own. As I've mentioned before, we'll work with him until he can eat enough on his own during the day and we'll just have to feed him at night. Eventually he'll be able to eat enough of the right foods on his own and we can stop using the pump altogether. Additionally, we'll have individual and groups sessions at the clinic, so we'll get to meet some of the other parents out there that are dealing with the same issues we are. I'm excited about Jonathan learning to eat on his own, since that will be the end of the feeding pump and tube. While there, we'll learn what he likes to eat and what would be an appropriate diet considering his issues and allergies.
We're very happy that we sought out a second opinion. Even if nothing comes back we'll at least know for sure what we're dealing with. It's time to start moving forward and we're glad that we found a doctor that agrees with us on this topic.
09 January 2012
Morning Person
Jonathan is getting to be a lot fun. Sure, he's still a wild man at only 19 months old, but he's also pretty entertaining. Some of the funniest things he does happen right when he wakes up from sleeping. Usually it involves talking and pointing at everything - he has a lot to say about everything it seems.
This morning he woke up and I went upstairs to get him. He told me all about my zipper and his shirt, among other things. When I picked him up he was still trying to wake up, so I just held him for a minute or two. After he had rubbed the sleep from his eyes, while I was still holding him, he lifted up his head from my shoulder and smiled large at me. I smiled back, then he put his head back down on my shoulder. Then, he did it again, and it was obvious that he was playing around and trying to play peek-a-boo with me. Every time he would put his head back down he would laugh, then I would laugh, which made him laugh harder, etc.
We played around like this a few times. It was pretty hilarious and a good start to both of our Monday mornings.
This morning he woke up and I went upstairs to get him. He told me all about my zipper and his shirt, among other things. When I picked him up he was still trying to wake up, so I just held him for a minute or two. After he had rubbed the sleep from his eyes, while I was still holding him, he lifted up his head from my shoulder and smiled large at me. I smiled back, then he put his head back down on my shoulder. Then, he did it again, and it was obvious that he was playing around and trying to play peek-a-boo with me. Every time he would put his head back down he would laugh, then I would laugh, which made him laugh harder, etc.
We played around like this a few times. It was pretty hilarious and a good start to both of our Monday mornings.
07 January 2012
It Begins
It's probably been about nine months since I last painted the crown molding in our house. I had finished the basement and main level last spring and although I was looking to take a break before starting upstairs, I didn't expect the break to last this long. The hospital stay, everything with Jonathan, job searching, starting a new job, and then birthdays and holidays put this project on hold.
I knew that after the holidays I would have time, since not much is going on this time of year. A few weekends ago I caulked the entire level and then earlier this week I finished up the two rooms in the master bath. A coworker and her husband had done the same thing to their similarly colored bedroom, and the pictures she showed me inspired me to start even though it was on a weeknight.
I should be able to finish this monster project by Valentine's Day.
I knew that after the holidays I would have time, since not much is going on this time of year. A few weekends ago I caulked the entire level and then earlier this week I finished up the two rooms in the master bath. A coworker and her husband had done the same thing to their similarly colored bedroom, and the pictures she showed me inspired me to start even though it was on a weeknight.
I should be able to finish this monster project by Valentine's Day.
05 January 2012
Diaper Tales
The other day we were at my parents house and the kids were playing around on the pillows. I glanced over and saw Jonathan roll off the pile of pillows and pull at his pants. That's his way of telling us he needs a diaper change. This time he didn't tell us. We all watched him take off running towards the front door where we had left the diaper bag. We heard some rustling around in the bag and then he ran back into the living room carrying the bag of wet wipes in his hand. He went over and held the bag up to Stacey while talking and pointing. Stacey asked if he wanted his diaper changed, so he grabbed her hand and led her all the way back to the front door and the diaper bag. When he got there, he threw himself down on the ground and stuck his legs in the air...
Earlier in the week Stacey went grocery shopping with Jonathan. All of a sudden, in the middle of the store and sitting in the shopping cart, he said, "UH-OH". He followed that up with a second "UH-OH". He was smiling. Only when Stacey had finished shopping and back at the car did she realize what he was talking about. The double UH-OH had been for the biggest diaper explosion we have ever seen. Let's just say that his car seat cover was washed, the front seat in the car was steam cleaned, and Stacey changed her shirt...
Earlier in the week Stacey went grocery shopping with Jonathan. All of a sudden, in the middle of the store and sitting in the shopping cart, he said, "UH-OH". He followed that up with a second "UH-OH". He was smiling. Only when Stacey had finished shopping and back at the car did she realize what he was talking about. The double UH-OH had been for the biggest diaper explosion we have ever seen. Let's just say that his car seat cover was washed, the front seat in the car was steam cleaned, and Stacey changed her shirt...
02 January 2012
Ice Sliding
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
p.s. turn up your volume to hear Julia at the far side of the pond and click the snowflake icon on the video
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.
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