Drinking slowing way down.

Truman's lack of drinking is really starting to worry us. Today, he took only 5 ounces by bottle, all of which were a real struggle. And, although he nursed three times, all were lackluster nursing sessions. I've read up on the signs of dehydration, and he doesn't seem to be showing them, but that only addresses the issue in the short term. We're really starting to think he's going to need intervention in some way.

We think he might be a little under the weather since Friday, but this decline in drinking has been going on for several weeks now. He had fever somewhere between 101 and 103 on Friday depending on whether we used an electronic ear thermometer on an under the arm one, and his breathing was a little labored. We gave him Tylenol for 24 hours, and he seems to have fully recovered. The fever was high enough that we talked to ones of the nurses at his clinic about when we should take him to the ER. Thinking about returning to a hospital was not fun to consider. Fortunately, the Tylenol worked and the fever came down fairly quickly.

Weight Loss

We spoke too soon. Yes, Truman has eaten more solids without vomiting this week, but his liquid intake has been abysmal. Over the last couple of weeks, he has reduced his measurable liquid intake to 6 to 8 ounces day from about 20 ounces. He also nurses a couple of times a day, and I do think he is nursing longer in the evening before bed and perhaps making up some of that, but it is very concerning.

And, for the first time since coming home from NICU, Truman lost weight. Four weeks ago, he weighed 15 lbs, 12 ounces. Today, there were conflicting weight checks--15 lbs, 9.5 ounces and 15 lbs, 11.5 ounces. Whichever one is correct, it's a loss either way.

Ben talked with Truman's nutritionist, Heather, about the loss, Truman's texture and vomiting issues, the reduction in liquids, and the work in therapy on trying to get Truman to take more of his bottles sitting up. She is concerned, but not surprised considering Truman's age and therapy regimin. She said weight loss sometimes accompanies changes in eating regimins. She was concerned, but not surprised, about the liquid issue as well. Truman has an occupational therapy eval by another therapist through his pediatric clinic in about 2.5 weeks, and we'll reevaluate eating issues then.

We are about to try a tool called a Z-vibe to see if that helps with some of the sensory issues with relation to eating. It arrived in the mail yesterday and is an oral vibrator designed to help stimulate the mouth and gums and help with oral sensory issues. It's worked for other kids with similar issues, so we'll try.

We have been working so hard on trying to help Truman with food issues, including how and what he eats, and this is really sad news.

--Kara

Good Eating Today!

Truman ate 8 ounces of yogurt in one setting today and didn't throw up. Come to think of it, I don't think he's vomited yet this week.

Small victories,

Kara

Welcome to Truman's New Blog

Friends and Family:

Welcome to Truman's new blog. We have decided that in order to better protect our Truman's privacy as he grows, we will close our regular blog and post only to friends and family. Keep checking for new posts! As promised, ttp://www.tinytruman.blogspot.com/ will stay open, but we will no longer post there.

--Kara