25 December 2015
08 December 2015
06 December 2015
Sky Zone Jump Party
On Sunday, the next day after we opened family presents, we all headed for Julia's real birthday party at Sky Zone. Several months ago we discovered this place. The kids loved it so much that Julia wanted to have her birthday party there. Some neighbors, new and old, and some school friends were invited to Julia's party. We all had a bunch of fun...even the parents and grandparents!
05 December 2015
Julia's 8th Birthday
Eight years old already. Talk about a growing up fast. On Saturday we celebrated Julia's birthday with family. In the morning she and Jonathan had a small tea party at Grandpa and Grandma's house. Afterwards, Aunt Michelle treated Julia to her first manicure and pedicure at the salon. Jules chose purple nails with flower designs - it's visible in some of these pictures.
In the afternoon all of the family in town came over to open family presents. Julia made out with a lot of American Girl/Our Generation things, a new, bigger bike, and chocolate cupcakes. Some of these pictures turned out amazing...so cute/sweet and showing her without the front tooth (her first) she lost the night before. We're very blessed to have such an amazingly wonderful girl as our daughter. We love you Jules and are so thankful for you.
In the afternoon all of the family in town came over to open family presents. Julia made out with a lot of American Girl/Our Generation things, a new, bigger bike, and chocolate cupcakes. Some of these pictures turned out amazing...so cute/sweet and showing her without the front tooth (her first) she lost the night before. We're very blessed to have such an amazingly wonderful girl as our daughter. We love you Jules and are so thankful for you.
29 November 2015
Feeding Pump Beaten
WAY TO GO JONATHAN!!!
It's probably been about a year since we've last used the pump. We were holding onto it just in case, but considering the progress we've made, this is finally a thing of the past. The first couple years of Jonathan's life were centered around this device. No more!
It's probably been about a year since we've last used the pump. We were holding onto it just in case, but considering the progress we've made, this is finally a thing of the past. The first couple years of Jonathan's life were centered around this device. No more!
27 November 2015
Summary of Findings
Here is where we stand after all is said and done from our visit to Cincinnati Children's Hospital. All of the tests with the exception of the "subtle" finding in the manometry test came back normal. This is really good news that almost everything came back normal.
From our follow up conversations with Dr. Kaul and his nurses, we are a little bit of a waiting mode over the next few months. We are waiting to see how he responds to the Botox and dilation procedure as this should tell us a lot of information. What we think we've been dealing with is a sensory issue coupled with some complications from his small bowel not firing quite correctly. Dr. Kaul also mentioned that Jonathan seemed to have a small stomach. I think this is partially due to him not eating large meals over the years to stretch it out and his small stature.
If the core issue is sensory, that he feels full when he really isn't, made worse by a smaller stomach and periodic misfiring of the muscles in his small intestine, then we should see some pretty good progress with his appetite and food intake from the Botox and dilation. This should give us confirmation of what we now suspect is going on.
We can also approach his treatment in the meantime under this assumption and do things like give him medicines that target those areas, feed him smaller and lower fat meals, etc. The really good news is that although it is hard to diagnose and treat kids with these sensory issues, they typically improve over time and usually resolve themselves. All the lack of eating and vomiting when we fed him via his tube when he was younger (at rates and volumes he should have been able to tolerate physically) could just come down to the fact that he thought he was full or too full and needed to vomit. We aren't even sure how he feels if it is a sensory issue. I am just referring to it as full since that what he says, doesn't eat, and says nothing hurts. It could be a completely different feeling that you and I experience when things are working normally.
Over the next several months we will be monitoring how much of his daily intake will come from him or come from us feeding him. We are already seeing good indications that he is making progress eating, and we know he is getting enough calories and using them properly, so his size is probably a non-issue at this point. He is going to be as big or small as he was always created to be.
From our follow up conversations with Dr. Kaul and his nurses, we are a little bit of a waiting mode over the next few months. We are waiting to see how he responds to the Botox and dilation procedure as this should tell us a lot of information. What we think we've been dealing with is a sensory issue coupled with some complications from his small bowel not firing quite correctly. Dr. Kaul also mentioned that Jonathan seemed to have a small stomach. I think this is partially due to him not eating large meals over the years to stretch it out and his small stature.
If the core issue is sensory, that he feels full when he really isn't, made worse by a smaller stomach and periodic misfiring of the muscles in his small intestine, then we should see some pretty good progress with his appetite and food intake from the Botox and dilation. This should give us confirmation of what we now suspect is going on.
We can also approach his treatment in the meantime under this assumption and do things like give him medicines that target those areas, feed him smaller and lower fat meals, etc. The really good news is that although it is hard to diagnose and treat kids with these sensory issues, they typically improve over time and usually resolve themselves. All the lack of eating and vomiting when we fed him via his tube when he was younger (at rates and volumes he should have been able to tolerate physically) could just come down to the fact that he thought he was full or too full and needed to vomit. We aren't even sure how he feels if it is a sensory issue. I am just referring to it as full since that what he says, doesn't eat, and says nothing hurts. It could be a completely different feeling that you and I experience when things are working normally.
Over the next several months we will be monitoring how much of his daily intake will come from him or come from us feeding him. We are already seeing good indications that he is making progress eating, and we know he is getting enough calories and using them properly, so his size is probably a non-issue at this point. He is going to be as big or small as he was always created to be.
26 November 2015
Other Hospital Pictures
On the way out...Jonathan's hospital bed, packing up to leave the room, and the cafeteria tables.
The cafeteria (salad bar shown - we ate many meals here), the hallways we walked, and one of the front desks.
Getting ready to leave but going back for more donuts, lunch in the cafeteria after two days of not eating (whatever goes!), and our trip to the Cincinnati Zoo the day after getting out of the hospital (and the day before flying home).
The cafeteria (salad bar shown - we ate many meals here), the hallways we walked, and one of the front desks.
Getting ready to leave but going back for more donuts, lunch in the cafeteria after two days of not eating (whatever goes!), and our trip to the Cincinnati Zoo the day after getting out of the hospital (and the day before flying home).
25 November 2015
Antroduodenal Manometry
The manometry test was one of the tests Jonathan had done for the first time. I found the whole thing really interesting. The purpose of the test was to measure the strength and coordination of Jonathan's upper G.I. nerves/muscles after he ate a meal. In some kids there are issues with the nerves and muscles firing at the wrong time farther down the pathway, slowing down the process. Imagine how hard it would be to squeeze all the toothpaste out of a tube if you started squeezing from the bottom but halfway though the process squeezed at the very top. A lot of toothpaste would go the opposite direction back down to the end of the tube.
At some point in the past some really smart people figured out that you could measure these contractions using changes in pressure in millimeters of mercury, or mmHG, the same thing meteorologists use for the weather (barometric pressure). So, they removed Jonathan's g-tube and placed a catheter through the same hole to measure these changes in pressure. If you look at the drawing below, the line represents the catheter placed and the dots on the line represent the sensors that are located all along the catheter. These sensors sit in precise locations, ready to measure the pressure (and therefore contractions) when food is eaten.
After his procedures on Monday (including the placement of the catheter) Jonathan wasn't allowed to eat or drink anything the rest of the day. The next day, Tuesday, the nurse came into his room and hooked up the catheter to the machine and computer that would record the results. The system started recording for a couple of hours before the test started to make sure everything looked good and all was calm with Jonathan's system. The first picture shows the contraption that Jonathan was hooked up to that then fed data to the computer.
Once we were all ready to go, Jonathan had about 30 minutes to eat a 300 calorie meal of his choice. We ordered breakfast for him about an hour prior to the test time...a double donut, juice and Cheetos breakfast of champions. He only ate half of one donut, but with everything else it was enough. For the test they needed to cut his eating and drinking off after 30 minutes so that we could measure a discrete set of food as it moved down the line. The third picture shows a sample of how the readings showed up on the computer and were recorded. This picture was taken right after Jonathan started eating, which is readily apparent when looking at the aqua colored line. The left side of this picture are readings taken before he started to eat and the right side are the readings after her started to eat. The difference is pretty obvious. Jonathan didn't mind this test too much because all he had to do was stay in bed without moving, finally get to eat yummy food, and watch Toy Story 1, 2 and 3 all in one sitting.
Although the doctor reviewed the results the following week, I know them as I type this blog. Overall things looked good. This test did not reveal any major findings. However, there was a small "misfiring" of one of the areas in the upper small intestine. The problem wasn't major, but it could be periodically slowing down the speed at which food moves through his system. Considering his motility test came back normal, this isn't a huge concern for me. It's something to be aware of and keep in the back of our mind for the future. It certainly, given the results of everything else, is just one factor of a couple of factors (according to the doctor/nurse) of what we have been experiencing with Jonathan for the last 5 years. We think what is really going on is a combination of a few things, which I will get into in an upcoming post.
For now, we are glad to check this one off the list since it is one of the last things left to do. Although there is probably an issue here worth monitoring, this could have been a lot worse.
At some point in the past some really smart people figured out that you could measure these contractions using changes in pressure in millimeters of mercury, or mmHG, the same thing meteorologists use for the weather (barometric pressure). So, they removed Jonathan's g-tube and placed a catheter through the same hole to measure these changes in pressure. If you look at the drawing below, the line represents the catheter placed and the dots on the line represent the sensors that are located all along the catheter. These sensors sit in precise locations, ready to measure the pressure (and therefore contractions) when food is eaten.
After his procedures on Monday (including the placement of the catheter) Jonathan wasn't allowed to eat or drink anything the rest of the day. The next day, Tuesday, the nurse came into his room and hooked up the catheter to the machine and computer that would record the results. The system started recording for a couple of hours before the test started to make sure everything looked good and all was calm with Jonathan's system. The first picture shows the contraption that Jonathan was hooked up to that then fed data to the computer.
Once we were all ready to go, Jonathan had about 30 minutes to eat a 300 calorie meal of his choice. We ordered breakfast for him about an hour prior to the test time...a double donut, juice and Cheetos breakfast of champions. He only ate half of one donut, but with everything else it was enough. For the test they needed to cut his eating and drinking off after 30 minutes so that we could measure a discrete set of food as it moved down the line. The third picture shows a sample of how the readings showed up on the computer and were recorded. This picture was taken right after Jonathan started eating, which is readily apparent when looking at the aqua colored line. The left side of this picture are readings taken before he started to eat and the right side are the readings after her started to eat. The difference is pretty obvious. Jonathan didn't mind this test too much because all he had to do was stay in bed without moving, finally get to eat yummy food, and watch Toy Story 1, 2 and 3 all in one sitting.
Although the doctor reviewed the results the following week, I know them as I type this blog. Overall things looked good. This test did not reveal any major findings. However, there was a small "misfiring" of one of the areas in the upper small intestine. The problem wasn't major, but it could be periodically slowing down the speed at which food moves through his system. Considering his motility test came back normal, this isn't a huge concern for me. It's something to be aware of and keep in the back of our mind for the future. It certainly, given the results of everything else, is just one factor of a couple of factors (according to the doctor/nurse) of what we have been experiencing with Jonathan for the last 5 years. We think what is really going on is a combination of a few things, which I will get into in an upcoming post.
For now, we are glad to check this one off the list since it is one of the last things left to do. Although there is probably an issue here worth monitoring, this could have been a lot worse.
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