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Swallow Study
Today Nathan underwent a swallow study. We’ve been wanting to do this since he was a week old but the OT at Seton didn’t think he could swallow enough to make it worth radiating him. Since we’ve been...
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Sucking, Swallowing, and BREATHING
He’s never going to take a bottle. (Deep breath.) Okay. Just as I was getting used to “He’s never going to nurse…” Yesterday we went to Speech Therapy. It’s been about a month since we’ve gone and I...
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They Don’t Know Me
I frequently feel misunderstood by the experts. I think they may be lumping me into the category of overly paranoid (special needs) parent. I think they are assuming my responses match the stereotype....
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Feeding Therapy Update
So after all my whining and complaining about N’s feeding therapy we ended up with a great therapist. At the beginning of the year I was frustrated. We’d been through three since he was born. It felt...
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Marathon Week
I feel like I just crossed the finish line. It wasn’t an easy race either. I put in a lot of sweat and tears. I had to walk part of the way. And I got pretty beat up by unexpected hurdles along the...
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One Year Mark of G-Tube Surgery
Thursday marked the one year anniversary of N’s G-tube surgery. And he’s still 100% dependent on it. So I decided it was finally time to find a spot in my kitchen cabinet for all of his medical feeding...
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Nathan’s Development at 15 Months
Last week I said to Nathan’s PT, “So I think he may start crawling, if you could call it that, before he’s sitting. Is that a problem?” Because you know these therapists have all sorts of ideas about...
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Feeding Therapy – Progress and Plan
We got home from vacation in July and started hitting feeding therapy hard. We increased the frequency of Nathan’s sessions to twice a week and started vital stim, which is a combination of electrical...
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Cold and Flu Season is Here
Cold and flu season has officially arrived at our home. Nathan caught a simple cold last weekend. He has since recovered beautifully, but on Wednesday afternoon he had a major episode while I was...
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Therapy Update
I have a friend who regularly asks me, “What is Nathan doing these days?” I find myself answering her question with what he’s not doing. Every time I do it. She graciously says, “But what is he doing?...
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Telling Others about Feeding Tubes
Last week I took Nathan to the allergist for a full panel scratch test. We wanted to rule out allergies as a source of Nathan’s esophageal reflux. I had been looking forward to this appointment for a...
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My Hope is Not Failing, but Shifting
My little Nathan is one big medical mystery. If I’ve said it once I’ve said it a thousand times, only God understands what is going on in his little body. Last week one of Nathan’s specialists asked me...
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We Figure it Out
I realized last week that many of you may be wondering if we still have “Backpack Boy” crawling around our house. We do not. We did the week trial of Nathan wearing a feeding pump continuously during...
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“Gaining a Better Understanding of GERD”: My Post on PreemieBabies101
This fall we decided to go ahead and give Nathan a Nissen Fundoplication, a surgery which wraps the top of the stomach around the esophagus to prevent any food and stomach material from coming back up...
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Therapy Update
I have a friend who regularly asks me, “What is Nathan doing these days?” I find myself answering her question with what he’s not doing. Every time I do it. She graciously says, “But what is he doing?...
View ArticleClik here to view.
Telling Others about Feeding Tubes
Last week I took Nathan to the allergist for a full panel scratch test. We wanted to rule out allergies as a source of Nathan’s esophageal reflux. I had been looking forward to this appointment for a...
View ArticleClik here to view.
My Hope is Not Failing, but Shifting
My little Nathan is one big medical mystery. If I’ve said it once I’ve said it a thousand times, only God understands what is going on in his little body. Last week one of Nathan’s specialists asked me...
View ArticleClik here to view.
We Figure it Out
I realized last week that many of you may be wondering if we still have “Backpack Boy” crawling around our house. We do not. We did the week trial of Nathan wearing a feeding pump continuously during...
View ArticleClik here to view.
“Gaining a Better Understanding of GERD”: My Post on PreemieBabies101
This fall we decided to go ahead and give Nathan a Nissen Fundoplication, a surgery which wraps the top of the stomach around the esophagus to prevent any food and stomach material from coming back up...
View ArticleClik here to view.
Making Changes to Therapy
Nothing will send me into a swirl of worry and confusion more than making a change to Nathan’s therapy. I don’t like change. Furthermore, I don’t like change when there’s no guarantee that the change...
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