31 December 2015
30 December 2015
29 December 2015
Tubing in Frisco
While Michele was in town we all decided to drive a couple hours north near Breckenridge to do a little tubing and sledding in the mountains. We made reservations for an hour and used every minute of it. We took turns going down 4 at once, with just the kids one at time, and with others. The kids loved it and so did the adults. Afterwards we had another round of fun at their free sledding hill. We brought two plastic sleds with us but only returned with one in working condition thanks to the jump in the middle of the hill. Julia loved going off the jump with me (I had to put my hands and feet down for the landing, otherwise it hurt), and Jonathan won the gold medal for longest distance. He is so light and has such a low center of gravity that he shot all the way down the hill every time (much to the enjoyment of all the adults around). We loved it and reminded me how fun the winter can be around here.
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).
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