Tests, food and a wedding
I need to blog more often. I read several blogs, and it’s a bummer to see the same page for more than a week.
Roxanne is doing great, and has had some progress on the feeding tube issue. Last week, she had an upper GI study to see if her reflux is still severe enough to require surgery (a nissen fudoplication). The news was pretty good: she still has reflux, but it’s moderate now. Maybe it’s better because she’s stopped having seizures, or because she’s older, I don’t know, I was just glad to hear it.
To review: Roxanne had an ND tube for 4 months. That means she got formula through a tube in her nose to her duodenum, skipping her stomach. In order to do that, she had to be connected to her feeding pump for 20 hours a day. Now that she “passed” her upper GI test, her doctor moved the tube into Roxanne’s stomach, and we’re starting to transition from continuous to bolus feedings. Roxanne has scheduled feeding times, and she’s getting food in her belly for the first time this year. It’s all feels much more normal. I feed her four times per day, and I can carry her around the house when she’s not being fed.
We’re continuing Roxy’s oral feeding training, but without much progress. It’s clear to me that she is going to need G tube surgery while she learns to eat orally again. I have an appointment with the GI surgeon tomorrow to figure out the details, including whether Roxanne needs the nissen or not. I’d rather not, thanks.
To follow up on my last post, here is Roxanne at J & K's wedding. She behaved quite well, but was very talkative during the ceremony, including a few well-timed rasberries that I hope the bride and groom found charming rather than annoying.
Cute, but loud.
Roxanne is doing great, and has had some progress on the feeding tube issue. Last week, she had an upper GI study to see if her reflux is still severe enough to require surgery (a nissen fudoplication). The news was pretty good: she still has reflux, but it’s moderate now. Maybe it’s better because she’s stopped having seizures, or because she’s older, I don’t know, I was just glad to hear it.
To review: Roxanne had an ND tube for 4 months. That means she got formula through a tube in her nose to her duodenum, skipping her stomach. In order to do that, she had to be connected to her feeding pump for 20 hours a day. Now that she “passed” her upper GI test, her doctor moved the tube into Roxanne’s stomach, and we’re starting to transition from continuous to bolus feedings. Roxanne has scheduled feeding times, and she’s getting food in her belly for the first time this year. It’s all feels much more normal. I feed her four times per day, and I can carry her around the house when she’s not being fed.
We’re continuing Roxy’s oral feeding training, but without much progress. It’s clear to me that she is going to need G tube surgery while she learns to eat orally again. I have an appointment with the GI surgeon tomorrow to figure out the details, including whether Roxanne needs the nissen or not. I’d rather not, thanks.
To follow up on my last post, here is Roxanne at J & K's wedding. She behaved quite well, but was very talkative during the ceremony, including a few well-timed rasberries that I hope the bride and groom found charming rather than annoying.
Cute, but loud.
posted by Talentedhands at
1:41 PM
1 Comments:
Cute, but loud? I'd say she's in the right family for sure! :D
I hope the appointment today went well - she certainly is a delight to spend time with. She hardly fussed at all on Sunday, and proved quite susceptible to Queen music. All signs of a higher intelligence, naturally ...
John
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Anonymous, at 5:02 PM
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