If I haven't posted in a week there is likely something that prevented me from doing so. Starting a new job, for example, would prevent me from having any spare time for, well, anything else. Practically speaking, the hours of 5 a.m. to about 8 p.m. are now spoken for during the week. I frequently used to make posts in the past while at work, but since I didn't have internet access for most of last week it didn't happen.
The week began with a nice drive up Powers to Voyager. I was pleasantly surprised at the shortness of the commute and the scenery. The drive took less time then expected - only about 20 minutes from door to door. I don't know if it's because we've gotten so much rain, but the drive is beautiful. The fields are green and are blanketed by wild sunflowers all along the way. Additionally, Black Forest and the mountains are on either side, reminding me that I live in a pretty place.
The first three days were spent in orientation. If at this point in the post you're trying to remember where I'm now working, it's at Compassion International. We met at the front desk and were escorted to the conference room in HR where we would spend the next three days. Our name tags were already in place, so we sat down in our assigned seats. Everyone in our class had to introduce themselves and we quickly realized that two of our twelve classmates were not from the United States. One, named Wesly, was from Haiti. The other, Innocent, was from Uganda. Before arriving I didn't know everything about Compassion, so although they introduced themselves, I wasn't sure about their purpose and background. After a few minutes it dawned on me that our two international classmates were former Compassion children. Later we found out that was indeed the case, and not only had they been Compassion children but they had also been part of Compassion's Leadership Development Program (LDP) and had been sent to university. Now one was sitting right next to me about to begin a year-long internship in the United States.
Wesly and Innocent's presence was a unique and very fortunate (for the rest of us) introduction to Compassion. It couldn't have been more real then that - having a child of Compassion sitting right next to me. These two young men had once been poor children in villages a world away, without money, food, hope, and even shoes (literally). Through the sponsorship and LDP programs Compassion offer, these two will return to their home countries healthy physically, mentally, and spiritually in addition to being educated and trained. This example is well summed up in Compassion's statement, "Releasing children from poverty in Jesus' name". It made us all fortunate to be part of something that is making a difference in the world, let alone these two lives.
What also made us feel fortunate to be accepted into the organization is that we found out only about 1% of applicants make the cut and get hired. I don't say this to boast, but to point to the fact that the organization has a reputation as a great place to work. I think they get a lot of applicants because the mission, environment, benefits, and pay all make it desirable. I'm sure probably only 10% of applications received are actually from qualified candidates. I know I haven't been there very long, but I can already tell that the people working there are a step above past coworkers (generally speaking). With all due respect to previous employers, this place seems like the real deal. Of course, that's only part of the equation - God has blessed this group with continued positive revenue growth each and every year for at least the past 10 years despite what's going on in the global economy.
On Thursday morning I was able to get settled at my desk. My title is Managerial Accountant or Business Partner Support. The easiest way to think about what I and the team will be doing is that we are the Customer Service arm of the Finance Department, at least in terms of providing other areas with useful financial information so that they can be the best stewards of the resources provided to their area(s). If you're not familiar with how most Finance and Accounting shops are set up, typically you have a few groups: the bean counters, the budget group, accounts receivable, accounts payable and payroll. They each have their own areas that they need to focus on, and at least at Compassion, responding to additional customer requests have proven difficult. Our team is partnered with other areas in the ministry outside of Finance and work cross-functionally with all areas within Finance to provide them with what they need. Mine is a support role, so I'll probably be doing a lot of data gathering and analysis.
For the next few weeks I'll be meeting with others in the department to find out what they do. I'm sure I'll gradually be pulled more and more into fray as I get more familiar with everything. I've already decided that I'm going to stay with the organization for a long time. There is no reason not to - or to put it more appropriately at this point, many reasons to. Even if my specific position turns out not to be an ideal arrangement, Compassion is big enough and good enough to make a move internally. Here's hoping for some great moments over the coming years.
27 August 2011
20 August 2011
Flavor Flav
We think we've figured out what has been causing Jonathan to vomit some of his feedings. Would you believe me if I said it was as simple as the flavor of the formula?
I had been saying for a long time that it just seemed like the formula was too "thick" for him. I couldn't quite explain the reason for my hunch, except that something along those lines wasn't agreeing with his system. I kept saying it was like we were giving him a milkshake when he wanted something less thick. I couldn't put it into more words then that.
Perhaps it really is a combination of the type of formula (hypoallergenic or not), the dilution, and the flavoring. At a minimum, it's a flavor issue. We've been giving him unflavored Elecare formula and he's been keeping it down. When we've tried to switch to Elecare Vanilla, he doesn't tolerate it. This is surprising since Elecare is the most expensive, hypoallergenic formula out there. The only difference between the two is the flavor.
My hunch was confirmed by a link my Mom sent me a few weeks ago from UW. Excessive flavorings can cause vomiting in some infants, among many other items on the list. We're experimenting with some cheaper, less hypoallergenic formulas with no flavor to see if we really need to use the most hypoallergenic kind or if it's just a flavor issue.
Next time we visit the doctor we're going to ask him about this. His office seems to think it shouldn't matter what the flavor is, since it's bypassing everything and going straight to the stomach. Logically that makes sense, but we're finding it not to be the case for Jonathan. My thought is that this suggests he does have some sort of reflux issue that is affected by a stronger flavored formula. If the formula doesn't taste and therefore doesn't "burn", he's able to keep it down. If it's too strong or too flavored, it comes back up.
Between this and the night feedings, we're well on our way to figuring everything out. If it's just a reflux issue in the end, children tend to grow out of it as they get older. Jonathan is also showing a lot more interest in our food now too, which should help with the transition. Here's hoping we cracked the case.
I had been saying for a long time that it just seemed like the formula was too "thick" for him. I couldn't quite explain the reason for my hunch, except that something along those lines wasn't agreeing with his system. I kept saying it was like we were giving him a milkshake when he wanted something less thick. I couldn't put it into more words then that.
Perhaps it really is a combination of the type of formula (hypoallergenic or not), the dilution, and the flavoring. At a minimum, it's a flavor issue. We've been giving him unflavored Elecare formula and he's been keeping it down. When we've tried to switch to Elecare Vanilla, he doesn't tolerate it. This is surprising since Elecare is the most expensive, hypoallergenic formula out there. The only difference between the two is the flavor.
My hunch was confirmed by a link my Mom sent me a few weeks ago from UW. Excessive flavorings can cause vomiting in some infants, among many other items on the list. We're experimenting with some cheaper, less hypoallergenic formulas with no flavor to see if we really need to use the most hypoallergenic kind or if it's just a flavor issue.
Next time we visit the doctor we're going to ask him about this. His office seems to think it shouldn't matter what the flavor is, since it's bypassing everything and going straight to the stomach. Logically that makes sense, but we're finding it not to be the case for Jonathan. My thought is that this suggests he does have some sort of reflux issue that is affected by a stronger flavored formula. If the formula doesn't taste and therefore doesn't "burn", he's able to keep it down. If it's too strong or too flavored, it comes back up.
Between this and the night feedings, we're well on our way to figuring everything out. If it's just a reflux issue in the end, children tend to grow out of it as they get older. Jonathan is also showing a lot more interest in our food now too, which should help with the transition. Here's hoping we cracked the case.
18 August 2011
Caught On Camera: Google Maps
Has anyone else noticed the Google Maps Street View Car in town? We did, because it drove right down our street and past our house while we were standing in the front yard. We're going to be famous!
The entire family was standing in the driveway while Julia painted the brick on the far left column with a brush and water. Stacey actually saw the car drive by since my back was towards the street. I had Jonathan in the backpack and was feeding him at the time. I hope they captured a funny look on Stacey's face when she pointed at the car as it drove by, or perhaps my face as I turned to look.
It's been four years since the first time our house was captured. We know it was late summer to autumn 2007 because my over-fertilization the first summer in our house was documented for all the world to see. I've had to live with this mistake for four years. If you think about us while on Google Maps in the coming months, check to see if the below photo from 2007 has been updated.
As if this weren't enough, it is also possible we got caught waiting at the intersection of Powers and Dublin with Michelle in the car. I'm going to keep an eye out for that one too and will let everyone know when it is finally posted. I was tempted to dart across traffic and follow the car, just to make sure I got on their site.
I must lead a boring life if the highlight of my day was getting on Google Maps Street View.
The entire family was standing in the driveway while Julia painted the brick on the far left column with a brush and water. Stacey actually saw the car drive by since my back was towards the street. I had Jonathan in the backpack and was feeding him at the time. I hope they captured a funny look on Stacey's face when she pointed at the car as it drove by, or perhaps my face as I turned to look.
It's been four years since the first time our house was captured. We know it was late summer to autumn 2007 because my over-fertilization the first summer in our house was documented for all the world to see. I've had to live with this mistake for four years. If you think about us while on Google Maps in the coming months, check to see if the below photo from 2007 has been updated.
As if this weren't enough, it is also possible we got caught waiting at the intersection of Powers and Dublin with Michelle in the car. I'm going to keep an eye out for that one too and will let everyone know when it is finally posted. I was tempted to dart across traffic and follow the car, just to make sure I got on their site.
I must lead a boring life if the highlight of my day was getting on Google Maps Street View.
16 August 2011
First Day Of School
Well, preschool and only two half days a week. Still, it's a big step considering Julia will now be in school of some sort for probably the next 20 years of her life. In a way we were a bit sad, but it wasn't too bad because she really wanted and was ready to start. She kept joking with us that she was going to "work" as B's "mommy".
Because the neighborhood preschool system is a lottery, we decided to enroll her in the nearby program at Pikes Pikes Christian School. Our neighbors and her friend "baby Julia" next door recommended the school after their experience last year. We figured the cost, proximity, type of school and advantages of starting with a friend and neighbor were a good decision.
She really liked her first day. We had visited her classroom and teacher yesterday at the open house, so we knew where to go. There was a name tag outside the classroom where we hung her backpack. Mrs Graham is her teacher's name. The first day they colored a picture of a raccoon, played on the playground, had a snack, and went to Spanish class. She learned the Spanish word for red (rojo). They also had chapel, sang songs, and marched around to music. I think that this will be a great experience for her, especially socially.
When we picked Julia up from class I ran into another guy who was also wearing a Spurs hat. His daughter is one of the about 10 children in Julia's class. We both wondered what the chances of that were, considering I've probably seen one other guy in town the last four years wearing a Spurs jersey. They live nearby, so we may catch a game or two together.
Julia kept saying how much she liked preschool, so this should be a good experience for her.
Because the neighborhood preschool system is a lottery, we decided to enroll her in the nearby program at Pikes Pikes Christian School. Our neighbors and her friend "baby Julia" next door recommended the school after their experience last year. We figured the cost, proximity, type of school and advantages of starting with a friend and neighbor were a good decision.
She really liked her first day. We had visited her classroom and teacher yesterday at the open house, so we knew where to go. There was a name tag outside the classroom where we hung her backpack. Mrs Graham is her teacher's name. The first day they colored a picture of a raccoon, played on the playground, had a snack, and went to Spanish class. She learned the Spanish word for red (rojo). They also had chapel, sang songs, and marched around to music. I think that this will be a great experience for her, especially socially.
When we picked Julia up from class I ran into another guy who was also wearing a Spurs hat. His daughter is one of the about 10 children in Julia's class. We both wondered what the chances of that were, considering I've probably seen one other guy in town the last four years wearing a Spurs jersey. They live nearby, so we may catch a game or two together.
Julia kept saying how much she liked preschool, so this should be a good experience for her.
15 August 2011
Important Work Stuff
Michelle gave Jonathan his first tool belt. He wasted no time checking out the mop for structural integrity.
13 August 2011
Cheyenne Mountain Zoo
With Michelle in town, we all decided to take the kids to the highest zoo (elevation) in the United States. I hadn't been since we returned to Colorado and this was Jonathan's first time. The first thing we did was take the chair lift to the very top for a picnic lunch. You can always count on Grandma to feed everyone.
The highlights for the kids were feeding the giraffes, the carousel, and the kiddie water spray area. I think Julia enjoyed seeing the other animals too, but you just can't compete with playing and feeding a giraffe crackers. I was able to get some great pictures of Jonathan's first trip to a zoo and him feeding the giraffes.
Great picture of Michelle and Jonathan; On the way down from our picnic, Downtown
Aerial view of the Broadmoor and giraffe area; Family photo with the giraffes
Jonathan feeding the giraffe crackers
Julia feeding a giraffe; Family carousel fun; Jonathan being a wild man while riding
Spray area; Jonathan climbing the fence on his own
The highlights for the kids were feeding the giraffes, the carousel, and the kiddie water spray area. I think Julia enjoyed seeing the other animals too, but you just can't compete with playing and feeding a giraffe crackers. I was able to get some great pictures of Jonathan's first trip to a zoo and him feeding the giraffes.
Great picture of Michelle and Jonathan; On the way down from our picnic, Downtown
Aerial view of the Broadmoor and giraffe area; Family photo with the giraffes
Jonathan feeding the giraffe crackers
Julia feeding a giraffe; Family carousel fun; Jonathan being a wild man while riding
Spray area; Jonathan climbing the fence on his own
11 August 2011
Premier Disappointment
The "football" season starts on Saturday, and boy WAS I excited. That is, until a bunch of idiots started rioting in the streets of London (and beyond). Spurs were scheduled to kick off the entire league season with the only early game at home against Everton. For those in the United States, it was scheduled to be on ESPN 2 in HD.
A week ago the UK riots started in the borough of Tottenham. The incidents happened pretty close to the stadium - in fact, the Tottenham Hotspur ticket windows were entirely smashed to bits. As a precaution, the Premier League announced today that the match on Saturday was canceled. I could accept that if not for the fact that it was the only match that has been postponed. I guess I'll have to wait another week.
One of the things I like to do each season is predict where I think the teams will finish in the league. I've stopped assigning places to every team since it's too tedious. Plus, I think it's more fun to place the teams together in similar groups. So, without further ado, here are my predictions, in alphabetical order:
Title Contenders
Chelsea, Manchester United
Third Place
Manchester City
Fourth Through Sixth
Arsenal, Liverpool, Tottenham
Rounding Out The Top Half
Everton, Fulham, Stoke, Sunderland
Mid-Table Mediocrity
Bolton, Newcastle, Villa, West Brom, Wolves
Fighting For Survival
Blackburn, Norwich City, QPR, Swansea, Wigan
A week ago the UK riots started in the borough of Tottenham. The incidents happened pretty close to the stadium - in fact, the Tottenham Hotspur ticket windows were entirely smashed to bits. As a precaution, the Premier League announced today that the match on Saturday was canceled. I could accept that if not for the fact that it was the only match that has been postponed. I guess I'll have to wait another week.
One of the things I like to do each season is predict where I think the teams will finish in the league. I've stopped assigning places to every team since it's too tedious. Plus, I think it's more fun to place the teams together in similar groups. So, without further ado, here are my predictions, in alphabetical order:
Title Contenders
Chelsea, Manchester United
Third Place
Manchester City
Fourth Through Sixth
Arsenal, Liverpool, Tottenham
Rounding Out The Top Half
Everton, Fulham, Stoke, Sunderland
Mid-Table Mediocrity
Bolton, Newcastle, Villa, West Brom, Wolves
Fighting For Survival
Blackburn, Norwich City, QPR, Swansea, Wigan
10 August 2011
Feeding Success
I was thinking the other day that I haven't posted much about Jonathan and the things he does. Granted, we've been really busy with feeding and chasing him around. He continues to develop normally and just like his sister did, knows everything that's going on around him.
Right now he's into clothes, especially socks and shoes. He likes to take his off almost as much as he likes to take mine off. It's a game of repetition. Shoes and socks off then immediately socks and shoes back on. He can play that game for a long time. He grabbed a onesie one morning and wanted to put it on.
He grabbed my water bottle and tried to reach for the water dispenser in the fridge. He likes to bite me because he thinks it's funny. The dining room is his playground. He likes to be chased and startled around the dining room table. He still has a little temper, throwing things or rolling on the floor when he doesn't get his way. He really likes to wave at cars and airplanes in the sky. As soon as he hears a car, he looks for it. As soon as he hears an airplane, he looks up at the sky. Watching him dance to music is hilarious.
We're coming up on almost a week since he last vomited. I really think we've figured out how to feed him in a way that he'll tolerate. We're getting in him 30 ounces of food but not at the target of 30 calories per ounce. We know he can handle the volume now. Even though we're not hitting the target calories, we're well on our way. We've gone back to the completely hypo-allergenic/broken down formula Elecare. It's expensive, but it's really working well. We've been diluting down to the same concentration as breast milk (20 calories per ounce) and he's doing great. We don't know yet if the reason he's keeping it down is due to the dilution, Elecare, and/or increasing the Prevacid. It also could be as simple as a change in formula or that we stopped using Reglan. Maybe it's diluted enough not to cause a reflux issue. Maybe it's as simple as he's more hydrated and can thus handle it better. As you can see, there are so many variables that make it a long, difficult task to figure out what works best.
The next step is to slightly increase the concentration to see if he can tolerate it. My personal opinion is that we won't be able to get all the way back up to 30 calories per ounce. We'll get close but not all the way. Considering his family genes and that 900 calories (last we heard) is 125% of what he needs since we're playing catch up, we're hoping this is the light at the end of the tunnel. The scale never lies though - that will be the real test.
Right now he's into clothes, especially socks and shoes. He likes to take his off almost as much as he likes to take mine off. It's a game of repetition. Shoes and socks off then immediately socks and shoes back on. He can play that game for a long time. He grabbed a onesie one morning and wanted to put it on.
He grabbed my water bottle and tried to reach for the water dispenser in the fridge. He likes to bite me because he thinks it's funny. The dining room is his playground. He likes to be chased and startled around the dining room table. He still has a little temper, throwing things or rolling on the floor when he doesn't get his way. He really likes to wave at cars and airplanes in the sky. As soon as he hears a car, he looks for it. As soon as he hears an airplane, he looks up at the sky. Watching him dance to music is hilarious.
We're coming up on almost a week since he last vomited. I really think we've figured out how to feed him in a way that he'll tolerate. We're getting in him 30 ounces of food but not at the target of 30 calories per ounce. We know he can handle the volume now. Even though we're not hitting the target calories, we're well on our way. We've gone back to the completely hypo-allergenic/broken down formula Elecare. It's expensive, but it's really working well. We've been diluting down to the same concentration as breast milk (20 calories per ounce) and he's doing great. We don't know yet if the reason he's keeping it down is due to the dilution, Elecare, and/or increasing the Prevacid. It also could be as simple as a change in formula or that we stopped using Reglan. Maybe it's diluted enough not to cause a reflux issue. Maybe it's as simple as he's more hydrated and can thus handle it better. As you can see, there are so many variables that make it a long, difficult task to figure out what works best.
The next step is to slightly increase the concentration to see if he can tolerate it. My personal opinion is that we won't be able to get all the way back up to 30 calories per ounce. We'll get close but not all the way. Considering his family genes and that 900 calories (last we heard) is 125% of what he needs since we're playing catch up, we're hoping this is the light at the end of the tunnel. The scale never lies though - that will be the real test.
06 August 2011
I'll Say Hi
Last November, Julia wanted to call grandpa and grandma on the phone to say that she saw them and a fireman on the news. We had just finished watching the story of the car crashing into their animal hospital. Since no one answered the phone, I tried to keep her talking while the answering machine was recording. Obviously, she didn't know it was recording. One of the classic responses in her message, when I asked if she loved grandpa and grandma was simply, "I'll say hi".
05 August 2011
Officially Hired
This morning I was officially offered the job at Compassion. My first day will be Monday, August 22. I still have two more weeks of slacking off. In reality, I'm really looking forward to working again. It's been a long, tough grind here at home considering the circumstances.
Coincidentally, my salary will be the exact same as it was at Focus. It's almost like we're going to pick up right where we left off. Compassion has better benefits and less expensive premiums, so in the end it's really a bit more...just enough to cover new expenses: preschool and a cleaning lady.
As I mentioned in a previous post, the timing is great for many reasons. We're entering our favorite time of the year, autumn. The weather starts to cool off, soccer and football start, it's "back" to school, and I'm starting a new job. It's a new season.
Coincidentally, my salary will be the exact same as it was at Focus. It's almost like we're going to pick up right where we left off. Compassion has better benefits and less expensive premiums, so in the end it's really a bit more...just enough to cover new expenses: preschool and a cleaning lady.
As I mentioned in a previous post, the timing is great for many reasons. We're entering our favorite time of the year, autumn. The weather starts to cool off, soccer and football start, it's "back" to school, and I'm starting a new job. It's a new season.
04 August 2011
Midnight Snack
We started feeding Jonathan during the night while he sleeps. Since we're pretty far behind, we're going to try a slow drip the entire night (from about 7 p.m. to 6 a.m.). We are hopeful that this approach will get us to where we need to be. So far we're not there. Also, this will mean we'll have to feed him less during the day. After the last feeding at night we are leaving the small tube connected to him. That way, we can sneak in and connect everything when he falls asleep.
One of the biggest drawbacks for us is that it means we'll each be waking up once during the night to check on him. Sometimes this can last an hour if things don't work out and he wakes up. Like many little boys, he moves around a lot at night. The tube inevitably gets tangled around him. These are the two main reasons why we haven't tried to do this until now...sleep and safety. The tube is very stretchy and connected to an IV pole that is very light. He's at an age where he can easily sit and stand up. The biggest worry is that somehow he'll find a way to wrap the tube around his body and/or neck. Even then, it's not very likely to happen. Between our sleep schedule and waking up to check on him, we're peeking in every 2.5 hours, probably not long enough for him to wind up the entire length of tubing.
Feeding him overnight can almost get us halfway each day. The first morning he woke up in a great mood. He was happy, full of energy and personality. The problem will this approach is that he's not hungry for most of the morning. We've tried to figure out how to best approach this, but it still seems like we're not going to be able to get there if he's going to be too full and/or continues vomiting. We're going to have to try a different formula if it doesn't improve. I think we're running out of options if the night feedings don't work.
I'm getting to a point where this appears like a simple case of trying to squeeze too much through a narrow opening. No matter how many different ways we try, the bottleneck is only going to let so much liquid through at a time. If that "flow rate" is too slow, we'll never be able to get there. Technically speaking, I guess we could easily find out the answer to that question. That would involve continuously feeding him over a 24 hour period at the same rate we're feeding him at night (38 ml/hour). That would answer the question of whether or not he can tolerate that much in one day.
We'll keep you updated on how this works out. I'm hopeful but not convinced it's going to make enough of a difference to meet the requirements. If not, it's going to be time to repeat some tests and/or get a second opinion.
One of the biggest drawbacks for us is that it means we'll each be waking up once during the night to check on him. Sometimes this can last an hour if things don't work out and he wakes up. Like many little boys, he moves around a lot at night. The tube inevitably gets tangled around him. These are the two main reasons why we haven't tried to do this until now...sleep and safety. The tube is very stretchy and connected to an IV pole that is very light. He's at an age where he can easily sit and stand up. The biggest worry is that somehow he'll find a way to wrap the tube around his body and/or neck. Even then, it's not very likely to happen. Between our sleep schedule and waking up to check on him, we're peeking in every 2.5 hours, probably not long enough for him to wind up the entire length of tubing.
Feeding him overnight can almost get us halfway each day. The first morning he woke up in a great mood. He was happy, full of energy and personality. The problem will this approach is that he's not hungry for most of the morning. We've tried to figure out how to best approach this, but it still seems like we're not going to be able to get there if he's going to be too full and/or continues vomiting. We're going to have to try a different formula if it doesn't improve. I think we're running out of options if the night feedings don't work.
I'm getting to a point where this appears like a simple case of trying to squeeze too much through a narrow opening. No matter how many different ways we try, the bottleneck is only going to let so much liquid through at a time. If that "flow rate" is too slow, we'll never be able to get there. Technically speaking, I guess we could easily find out the answer to that question. That would involve continuously feeding him over a 24 hour period at the same rate we're feeding him at night (38 ml/hour). That would answer the question of whether or not he can tolerate that much in one day.
We'll keep you updated on how this works out. I'm hopeful but not convinced it's going to make enough of a difference to meet the requirements. If not, it's going to be time to repeat some tests and/or get a second opinion.
03 August 2011
Life In Pictures
In the backpack ready for a feeding - Bedhead, eating waffles first thing in the morning - "Ice skating" on the wood floor with Christmas socks and gloves
A typical smile - Enjoying early morning cartoons
A typical smile - Enjoying early morning cartoons
02 August 2011
Summary Of The Doctor's Appointment
Progress since the last appointment: no weight or height gain over the past six weeks.
General Assessment
Overall, Jonathan seems to be functioning in a relatively normal fashion. His system may be a bit on the slow side, but it isn't something to be overly concerned about at this point. He is close enough to normal that a surgical procedure isn't probably necessary.
The biggest challenge is figuring out how to get the calories in him in a way that he'll tolerate. In the past, he has made good gains between appointments when we were able to get enough food in him. From the last appointment to this appointment, we did not get enough in him and therefore (as expected), he did not produce any gains. Although we have issues with his system being slow, in the doctor's opinion we are close enough in terms of his system's speed. We just need to eliminate the losses due to vomiting and start him on a slow drip at night.
In his experience, most children with this level of motility will grow out of it. That, or once they are old enough, it can be something that can be easily managed. The challenge now is mainly due to the age of Jonathan and his lack of self-awareness. The seemingly more important issues in the long term are on the behavioral side. As long as children in these cases attend feeding therapy, they will be able to learn to swallow and eat. In the future we can attempt to do this locally, but it will take much longer then if we took a three to four week trip to the east coast for an eight hour a day intensive program at a leading facility in Virginia (for example). Left to themselves, in his experience, children won't learn to eat solid foods and will continue this habit even up to ages of 12, only consuming milk because they never learned to eat or swallow.
Vomiting
This seems to be our biggest challenge. At this age, kids can decide to vomit for "a thousand different reasons". We've experienced that ourselves with Jonathan. He was afraid we might have some issues with vomiting, since the button alters the stomach structure and we opted not to have a Nissen procedure done in the hospital. He mentioned that even when the Nissen is performed, it doesn't always stop the vomiting. At this point, since things are supposed to be functioning in a relatively normal fashion, the best approach is to change some of the things we have been doing so that it best works with his system. Again, the volume he can tolerate right now wasn't so much of a concern in the short term or even the long term. For now, it's just something we have to work with assuming we can keep the food in him.
To help reduce the vomiting, we are going to double the dosage of Prevacid (an acid reducer). We are going switch formulas and go back to Elecare, the really expensive, hypo-allergenic formula. Also, we're going to have to accept the fact that we can't get enough formula in him throughout the day and begin a slow drip at night. The key is to make sure that we stop the pump around midnight so that his stomach has enough time to empty before breakfast. A slow drip overnight will give us another feeding each day with little or no effort. We just have to make sure it's done right (tubes in his crib). At this point, we haven't really exhausted all of the options when it comes to feeding him different formulas and on different schedules. We didn't want to feed him at night for safety reasons, but it's now looking like we don't have any other choice. If this doesn't seem to work, we may then talk about the Nissen procedure, but even then that doesn't always stop the vomiting. Obviously, he seems to think we can do this by changing the schedule, food, and drugs without the need for surgery. Time will tell - every situation is different.
Dietary Alternatives
Right now, although these formulas contain a high amount of fat, they are supposed to contain mostly meta oil as the source of fat. Although fat does take longer to digest and move through our system, meta oil is supposed to be easily digested and provides a good balance between digestive speed and caloric content. Liquid calories are the most quickly digested.
My take: that's the main issue for us...apple juice (for example) can fly through your system, but it takes much more volume for the same amount of calories (all sugar too, by the way). Even at 30 calories per ounce in the formula, we're still struggling to meet the requirements. Coca-Cola only has about 14 calories per ounce (160 calories total) and 30 grams of sugar in a 12 ounce can. You just can't get there without fat. Dr Yazdi's opinion is that considering the relative normalcy of the gastric emptying test results on Jonathan, it shouldn't make much of a difference. At the very least, it's probably not something recommended since we'd be sacrificing so many calories to try and speed up the process. We could try, but I'm thinking it's probably not going to work out. We are still targeting 900 calories each day, give or take a few considering he may not need as many as the next child.
Repeating Tests
Surprisingly, Dr. Yazdi said he takes the specific results of the gastric emptying study with "a grain of salt". Firstly, is supposed to be done using solid foods laced with a radioactive trace element. Since Jonathan is not eating solid foods yet, the study had to be done using liquids, so the results are not completely the same. Secondly, he really only uses the tests for a ball park reference on what should be done regarding surgery, next steps, etc. That is, if an infant comes back with zero motility (emptying), then that's a sure sign there is an issue that needs a surgical procedure. If we've done the study and generally speaking, it's not an extreme case and the results are in the normal or close to normal range, then Jonathan should still be treated in a way that assumes his systems can pass enough through. Another way to look at this is, because everything seems normal (or close to normal) from the test, that isn't enough of a reason to do anything else. He still believes that the tests done in the hospital are valid, and there isn't much value doing them again just to confirm the results. I'm not sure if I agree with him on this, unless this specific test really does just give him an idea if there is any major issues going on. We could always request a repeat test if we want, but generally he doesn't see anything in this case that would warrant him ordering another one.
Reglan
Since we expressed concerns that he's been on it for three months, we're going to stop giving it to him. We started to notice a few side effects associated with the drug, so we asked the question. Even if the things we were observing were due to other explainable factors, there were enough of them that it probably wasn't worth risking any longer. Ironically, one of the side effects is vomiting. Let's hope that was the reason why he's been throwing up. Besides, it's a drug that can't be used for very long and he was going to have to stop it sooner rather then later anyway. Reglan was just a tool to jump start the process but wasn't going to have any long term use or benefits other then to get us over the initial hump after the hospital. For right now, he doesn't think that there are any good drugs on the market for this condition (what we've read as well). So, we're going to see how things work without anything before he prescribes something else like Erythromycin. In his words, pharmaceuticals aren't really an option to treat this condition. Personally, I think we are leery of participating in any trials for emerging therapies unless we are completely out of options.
Other Issues
The doctor did mention that there could be other factors that we are missing that can affect his growth. This involves extensive testing of genetic abnormalities and metabolic issues that can affect growth. For example, a child with down-syndrome has a completely different growth curve. These sort of external factors can be tested, but so far he has no reason to believe there is anything else this severe going on. Reason: he's shown expected growth (height, weight, head measurement, and the ratios between them all) when given enough food, and expected non-growth when not given enough food. To him it still seems pretty straightforward that this is still a simple case of just getting enough food in him. The challenge is to figure out the best way to do that until he is old and learned enough to be able to take that regulation over himself.
Summary
After discussing this with the doctor, it doesn't seem like this should be a big problem in the long term. Like I said above, the difficulty right now is managing this issue due to age, lack of ability to communicate and self-regulate. He still thinks Jonathan should be able to handle the normal amount of calories each day, assuming we make changes and try things in different ways. It's not going to make our work any easier. At this point we need to keep trying different things until we feel like we've exhausted all efforts. In a way that's reassuring, but in another way it kind of seems like if it doesn't work, we don't really have a lot of other medical options. I guess if things don't seem to be working this time, and we're out of ideas, then we should really think about getting a second opinion. I don't know what else there would be left to do anyway.
General Assessment
Overall, Jonathan seems to be functioning in a relatively normal fashion. His system may be a bit on the slow side, but it isn't something to be overly concerned about at this point. He is close enough to normal that a surgical procedure isn't probably necessary.
The biggest challenge is figuring out how to get the calories in him in a way that he'll tolerate. In the past, he has made good gains between appointments when we were able to get enough food in him. From the last appointment to this appointment, we did not get enough in him and therefore (as expected), he did not produce any gains. Although we have issues with his system being slow, in the doctor's opinion we are close enough in terms of his system's speed. We just need to eliminate the losses due to vomiting and start him on a slow drip at night.
In his experience, most children with this level of motility will grow out of it. That, or once they are old enough, it can be something that can be easily managed. The challenge now is mainly due to the age of Jonathan and his lack of self-awareness. The seemingly more important issues in the long term are on the behavioral side. As long as children in these cases attend feeding therapy, they will be able to learn to swallow and eat. In the future we can attempt to do this locally, but it will take much longer then if we took a three to four week trip to the east coast for an eight hour a day intensive program at a leading facility in Virginia (for example). Left to themselves, in his experience, children won't learn to eat solid foods and will continue this habit even up to ages of 12, only consuming milk because they never learned to eat or swallow.
Vomiting
This seems to be our biggest challenge. At this age, kids can decide to vomit for "a thousand different reasons". We've experienced that ourselves with Jonathan. He was afraid we might have some issues with vomiting, since the button alters the stomach structure and we opted not to have a Nissen procedure done in the hospital. He mentioned that even when the Nissen is performed, it doesn't always stop the vomiting. At this point, since things are supposed to be functioning in a relatively normal fashion, the best approach is to change some of the things we have been doing so that it best works with his system. Again, the volume he can tolerate right now wasn't so much of a concern in the short term or even the long term. For now, it's just something we have to work with assuming we can keep the food in him.
To help reduce the vomiting, we are going to double the dosage of Prevacid (an acid reducer). We are going switch formulas and go back to Elecare, the really expensive, hypo-allergenic formula. Also, we're going to have to accept the fact that we can't get enough formula in him throughout the day and begin a slow drip at night. The key is to make sure that we stop the pump around midnight so that his stomach has enough time to empty before breakfast. A slow drip overnight will give us another feeding each day with little or no effort. We just have to make sure it's done right (tubes in his crib). At this point, we haven't really exhausted all of the options when it comes to feeding him different formulas and on different schedules. We didn't want to feed him at night for safety reasons, but it's now looking like we don't have any other choice. If this doesn't seem to work, we may then talk about the Nissen procedure, but even then that doesn't always stop the vomiting. Obviously, he seems to think we can do this by changing the schedule, food, and drugs without the need for surgery. Time will tell - every situation is different.
Dietary Alternatives
Right now, although these formulas contain a high amount of fat, they are supposed to contain mostly meta oil as the source of fat. Although fat does take longer to digest and move through our system, meta oil is supposed to be easily digested and provides a good balance between digestive speed and caloric content. Liquid calories are the most quickly digested.
My take: that's the main issue for us...apple juice (for example) can fly through your system, but it takes much more volume for the same amount of calories (all sugar too, by the way). Even at 30 calories per ounce in the formula, we're still struggling to meet the requirements. Coca-Cola only has about 14 calories per ounce (160 calories total) and 30 grams of sugar in a 12 ounce can. You just can't get there without fat. Dr Yazdi's opinion is that considering the relative normalcy of the gastric emptying test results on Jonathan, it shouldn't make much of a difference. At the very least, it's probably not something recommended since we'd be sacrificing so many calories to try and speed up the process. We could try, but I'm thinking it's probably not going to work out. We are still targeting 900 calories each day, give or take a few considering he may not need as many as the next child.
Repeating Tests
Surprisingly, Dr. Yazdi said he takes the specific results of the gastric emptying study with "a grain of salt". Firstly, is supposed to be done using solid foods laced with a radioactive trace element. Since Jonathan is not eating solid foods yet, the study had to be done using liquids, so the results are not completely the same. Secondly, he really only uses the tests for a ball park reference on what should be done regarding surgery, next steps, etc. That is, if an infant comes back with zero motility (emptying), then that's a sure sign there is an issue that needs a surgical procedure. If we've done the study and generally speaking, it's not an extreme case and the results are in the normal or close to normal range, then Jonathan should still be treated in a way that assumes his systems can pass enough through. Another way to look at this is, because everything seems normal (or close to normal) from the test, that isn't enough of a reason to do anything else. He still believes that the tests done in the hospital are valid, and there isn't much value doing them again just to confirm the results. I'm not sure if I agree with him on this, unless this specific test really does just give him an idea if there is any major issues going on. We could always request a repeat test if we want, but generally he doesn't see anything in this case that would warrant him ordering another one.
Reglan
Since we expressed concerns that he's been on it for three months, we're going to stop giving it to him. We started to notice a few side effects associated with the drug, so we asked the question. Even if the things we were observing were due to other explainable factors, there were enough of them that it probably wasn't worth risking any longer. Ironically, one of the side effects is vomiting. Let's hope that was the reason why he's been throwing up. Besides, it's a drug that can't be used for very long and he was going to have to stop it sooner rather then later anyway. Reglan was just a tool to jump start the process but wasn't going to have any long term use or benefits other then to get us over the initial hump after the hospital. For right now, he doesn't think that there are any good drugs on the market for this condition (what we've read as well). So, we're going to see how things work without anything before he prescribes something else like Erythromycin. In his words, pharmaceuticals aren't really an option to treat this condition. Personally, I think we are leery of participating in any trials for emerging therapies unless we are completely out of options.
Other Issues
The doctor did mention that there could be other factors that we are missing that can affect his growth. This involves extensive testing of genetic abnormalities and metabolic issues that can affect growth. For example, a child with down-syndrome has a completely different growth curve. These sort of external factors can be tested, but so far he has no reason to believe there is anything else this severe going on. Reason: he's shown expected growth (height, weight, head measurement, and the ratios between them all) when given enough food, and expected non-growth when not given enough food. To him it still seems pretty straightforward that this is still a simple case of just getting enough food in him. The challenge is to figure out the best way to do that until he is old and learned enough to be able to take that regulation over himself.
Summary
After discussing this with the doctor, it doesn't seem like this should be a big problem in the long term. Like I said above, the difficulty right now is managing this issue due to age, lack of ability to communicate and self-regulate. He still thinks Jonathan should be able to handle the normal amount of calories each day, assuming we make changes and try things in different ways. It's not going to make our work any easier. At this point we need to keep trying different things until we feel like we've exhausted all efforts. In a way that's reassuring, but in another way it kind of seems like if it doesn't work, we don't really have a lot of other medical options. I guess if things don't seem to be working this time, and we're out of ideas, then we should really think about getting a second opinion. I don't know what else there would be left to do anyway.
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