Happy Friday!
---
---
---
---
Friday, July 27, 2012
Foto Fabulous Friday
In honor of the opening ceremonies.... Jacob's Olympic feat for the day. We're up to 10 seconds by ourself.
Happy Friday!
Happy Friday!
Posted with Blogsy
Tuesday, July 24, 2012
The Patience of Jacob
Jacob's Journal has been a bit neglected lately because, well, Jacob's parents are a little insane. Mid-summer and we have been out of town, had family visiting, or been in town but at activities that had us out of the house all day for weeks on end. Jacob patiently tolerates being drug along wherever his parents take him next. Safe to say there is no grass growing under any of our feet.
In the last three weeks alone, Jacob has been to Maine...
... and then Washington DC (for the National Down Syndrome Convention, thank you very much).
Stay tuned. If we manage to get a little time at home, we will get back to Journal keeping!
.
In the last three weeks alone, Jacob has been to Maine...
---
---
... and then Ohio...(Happy Congrats to Cuz Nichole and new hubby Adam!)
---
---
---
---
Stay tuned. If we manage to get a little time at home, we will get back to Journal keeping!
.
Saturday, July 7, 2012
Sunday, July 1, 2012
Food Glorious Food!
Jacob’s next big adventure is learning how to eat. You know, with his mouth. Exciting!
To bring anyone up to speed who is interested. Jacob had a barium swallow test done when he was a couple months old and didn’t do so hot. He didn’t fail it outright but definitely didn’t pass. What the test showed is called Micro-aspiration... which means that little bits of food would sneak by his epiglottis and into his lungs. Yikes! The prognosis from the beginning was – this is something he will grow out of. Most kids do by the time they are two. But what to do in the meantime?
Since his lungs were already being stressed out by his heart and we (by ‘we’ I mean Team Jacob that includes smart people that understood this better than we did at the time) didn’t want to add insult to injury (they really do call it an insult to the lungs when you aspirate)…we decided to have this installed:
It’s called a G-Tube and this jazzy little button provides a direct connection from the outside world to the inside of Jacob's stomach. Formula is pumped in at regular intervals throughout the day not that much unlike feeding a baby by mouth. For anyone that’s been around Jacob, the G-tube and associated “tube feeding” situation is a lot less exotic than it sounds. Turns out its actually pretty simple.
But anyway.
Here we are. Heart fixed. Lungs better. One year old, half way to two. On we go... to learning how to eat again! We have the go ahead from the specialist to start with small amounts... to learn flavors, get used to things going into the mouth, and most of all to practice getting it down right. Swallow, swallow, swallow.
I am recording Jacob's practice and will post updates on progress. In the meantime, here's a clip showing Jacob getting started in this venture like the little overachiever that he is.
Footnote: If you are a parent that googled your way to this page looking for information about G-tubes. Our takeaway - for what it's worth..... Yes, we tortured ourselves over the decision to put in the G-tube too. Had we known then what we know now, we would not have wasted one minute on the decision. For Jacob it was the right thing to do. Yes, it required surgery and anesthesia and no one wants to submit their baby to that unnecessarily. But in one foul swoop that ingenious little piece of plastic protected his developing lungs from unknown damage, allowed us to feed and nourish him so he could grow / develop unhindered, and it lifted a boatload of stress from all three of us that was consistently present while he ate by mouth. Getting a bottle down was a battle. It was so much work for him and most of the time unsuccessful. Eventually we had to use an NG tube to help him eat - which did get food in his belly but was a nightmare to manage (checking placement, etc) and added even more stress. Plus it was on his precious face all the time. Plus he had to wear mittens because he would pull it out .... but that meant it was hard for him to play with his toys. Plus it irritated his throat making him cough and spit up more. (we could go on). Comparatively the G-tube was/is a dream.
To bring anyone up to speed who is interested. Jacob had a barium swallow test done when he was a couple months old and didn’t do so hot. He didn’t fail it outright but definitely didn’t pass. What the test showed is called Micro-aspiration... which means that little bits of food would sneak by his epiglottis and into his lungs. Yikes! The prognosis from the beginning was – this is something he will grow out of. Most kids do by the time they are two. But what to do in the meantime?
Since his lungs were already being stressed out by his heart and we (by ‘we’ I mean Team Jacob that includes smart people that understood this better than we did at the time) didn’t want to add insult to injury (they really do call it an insult to the lungs when you aspirate)…we decided to have this installed:
It’s called a G-Tube and this jazzy little button provides a direct connection from the outside world to the inside of Jacob's stomach. Formula is pumped in at regular intervals throughout the day not that much unlike feeding a baby by mouth. For anyone that’s been around Jacob, the G-tube and associated “tube feeding” situation is a lot less exotic than it sounds. Turns out its actually pretty simple.
But anyway.
Here we are. Heart fixed. Lungs better. One year old, half way to two. On we go... to learning how to eat again! We have the go ahead from the specialist to start with small amounts... to learn flavors, get used to things going into the mouth, and most of all to practice getting it down right. Swallow, swallow, swallow.
I am recording Jacob's practice and will post updates on progress. In the meantime, here's a clip showing Jacob getting started in this venture like the little overachiever that he is.
Footnote: If you are a parent that googled your way to this page looking for information about G-tubes. Our takeaway - for what it's worth..... Yes, we tortured ourselves over the decision to put in the G-tube too. Had we known then what we know now, we would not have wasted one minute on the decision. For Jacob it was the right thing to do. Yes, it required surgery and anesthesia and no one wants to submit their baby to that unnecessarily. But in one foul swoop that ingenious little piece of plastic protected his developing lungs from unknown damage, allowed us to feed and nourish him so he could grow / develop unhindered, and it lifted a boatload of stress from all three of us that was consistently present while he ate by mouth. Getting a bottle down was a battle. It was so much work for him and most of the time unsuccessful. Eventually we had to use an NG tube to help him eat - which did get food in his belly but was a nightmare to manage (checking placement, etc) and added even more stress. Plus it was on his precious face all the time. Plus he had to wear mittens because he would pull it out .... but that meant it was hard for him to play with his toys. Plus it irritated his throat making him cough and spit up more. (we could go on). Comparatively the G-tube was/is a dream.
Jacob with an NG Tube (before the G-tube)
Subscribe to:
Posts (Atom)