May 28th – HOMECOMING!

He’s home! It’ll still be a struggle, we have more follow-up appointments and additional testing. We also have a new electronic friend in the apartment. Unless anything changes, we don’t plan on nightly updates. Also, we’re switching to a new website, www.millershewrote.com (Get it? Like the show!)

May 27th – Homecoming?

John put on about another 60 grams last night. Woo! The surgeon was finally able to evaluate his g-button site. It was determine to be just a little too large for him, so a smaller tube was placed. How they managed to replace it with a smaller tube without surgery is a miracle to me. I … Read more

May 26th – Tired

John did manage to put back on about 60 grams at today’s weigh-in. His surgeon was never able to inspect his g-tube site so it’s unknown if there are any issues referring to the leakage and balloon losing water. That should happen tomorrow. There is a glimmer of hope he may get to go home … Read more

May 25th – Backwards

Remember those 140 grams he gained over the past few days? Well, he’s lost them at today’s weigh in. This is a big reason why I don’t like to get too excited. Cautiously optimistic, but rarely overly excited. He’s back to 8.4lbs which is what he weighed on 5/22 I wouldn’t read into thinking we’re depressed, … Read more

May 24th – Up

If the information is correct, John gained 100 grams last night bringing him up to 8.12. Our conversions may be off. We’re having to convert kilos to pounds. Long story short, he’s up a lot today, more than what they’re comfortable with because he was starting to reflux and he vomited this morning. For those into … Read more

May 23rd – 8.5

John put on another 40 grams this morning which brings him up to 8.5lbs. Nothing really new. We’re still waiting on a few test results. He did vomit at one of his feedings, but no adjustments have been made. They wanted to see if he’d tolerate the other feedings. Hopefully it doesn’t affect tomorrow’s weigh-in. -Thomas thomas@thomasmiller.me

May 22nd – 8.4

John gained 40 grams last night. This brings him back up to 8.4 lbs. His GI doctor believes his slow weight gain my be metabolic or genetic related. A stool sample has been “donated” to check for malabsorption issues and a few other related issues. The ENT doesn’t believe he will require oxygen when he returns home, but he … Read more

May 21st – 30 Grams

John gained 20 grams from the night before. Normally for a child his age that would be fine. Since he’s far behind in weight they’re asking for 30 grams a night and he must do so for two days in a row. To accomplish this they’ve adjusted his feedings again. He needs to finished all that … Read more

May 20th – Esperamos

We didn’t see any weight gain this morning. That’s the most frustrating part. His doctors have increased his overall intake to see if this helps. In order for him to go home they’re looking for two consistent days of weight gain, back-to-back. Each time there is a setback the clock resets. Overall he’s actually in … Read more

May 19th – Stumped

Well, so far nothing really new. He did gain weight last night, but it wasn’t enough for him to be able to leave. His team wants to give him another night of feedings and check his weight again in the morning. If no significant weight changes, then the team will make more feeding adjustments. The … Read more