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John-Mark Update
JnRockwall
Member Posts: 16,352 ✭✭✭
It's been a while since I have posted anything on John-Mark. Sorry to those who keep tabs on him, and thank you for your well wishes, prayers and support/kind words.
JM is doing awesome! He had a bit of a spell where he was losing weight. He got up to 20.5 pounds, and poof, in no time he was back down to 17.5. It was enough to worry the Drs.
He had bad reflux, to the point to where most everything going down was coming back up. Which is to say, he was getting no calories, hence the weight loss.
We had the reflux surgery (niessen) done, just under 2 months ago. Basically, they closed up the orafice where his esophagus (i bunged that up) comes into his stomach. So nothing can go back up, but it can come down.
It appears everything went well. But he was still not gaining weight. He wasn't losing, we just could not get it back on him. He had 4 food changes in 3 weeks. Finally! His last vist 2 weeks ago, he was up by a pound. But, we are feeding constantly. The next step up from our regimen is 24 hour feedings. It's hell guys, I am here to tell you. He has to eat ever 4 hours and it takes him an hour to eat (actually has a pump to feed him).
He is now taking in 24 oz in 24 hours because he gets 2 servings continuously through the night. Another nightmare, if may add. Don't confuse this for whining, I know far more folks have bigger fish to fry. But it is hard waking at every sound to make sure he is not tangled in tube.
So anyways, he has pulled through this trial and seems to be racing in the right direction. He is one happy little boy. He has mastered crawling and pulling up, which is ahead of schedule for him. He has therapy once a week, and he was meeting or exceeding his goals, so they dropped him, said there was nothing they could do for him. I guess that is good. Makes me feel good anyways.
And that pretty much gets you all up to date on him. And thanks again to all of you who keep tabs on him.
And now, for the money shot...
He is showing you all his 1st tooth!
JM is doing awesome! He had a bit of a spell where he was losing weight. He got up to 20.5 pounds, and poof, in no time he was back down to 17.5. It was enough to worry the Drs.
He had bad reflux, to the point to where most everything going down was coming back up. Which is to say, he was getting no calories, hence the weight loss.
We had the reflux surgery (niessen) done, just under 2 months ago. Basically, they closed up the orafice where his esophagus (i bunged that up) comes into his stomach. So nothing can go back up, but it can come down.
It appears everything went well. But he was still not gaining weight. He wasn't losing, we just could not get it back on him. He had 4 food changes in 3 weeks. Finally! His last vist 2 weeks ago, he was up by a pound. But, we are feeding constantly. The next step up from our regimen is 24 hour feedings. It's hell guys, I am here to tell you. He has to eat ever 4 hours and it takes him an hour to eat (actually has a pump to feed him).
He is now taking in 24 oz in 24 hours because he gets 2 servings continuously through the night. Another nightmare, if may add. Don't confuse this for whining, I know far more folks have bigger fish to fry. But it is hard waking at every sound to make sure he is not tangled in tube.
So anyways, he has pulled through this trial and seems to be racing in the right direction. He is one happy little boy. He has mastered crawling and pulling up, which is ahead of schedule for him. He has therapy once a week, and he was meeting or exceeding his goals, so they dropped him, said there was nothing they could do for him. I guess that is good. Makes me feel good anyways.
And that pretty much gets you all up to date on him. And thanks again to all of you who keep tabs on him.
And now, for the money shot...
He is showing you all his 1st tooth!
Comments
We will keep all of you in our thoughts and prayers.
Dan
What a cutie! continued prayers form here.
Dan
Indeed,+1,,[:)][:)][:)]
Glad He's Doing Well
Woody & Dori[^]