Wyatt eats!

Who would've thought a virus would be the best thing that's happened in a long time... Wyatt had a nasty stomach bug last week. We did the same thing we do every other time something like this happens- cut his gtube feeds to pedialyte and slowly work them back in over the next couple of days. He basically went 24 hours without food, just pedialyte to keep him hydrated. The next morning he woke up, sat at the breakfast table with Ryan and tried to steal her blueberry waffle. He sat there saying "waffle", "cereal"- "juice"! He was finally feeling what it was like to be hungry and understood what it was. He ate half the waffle, a handful of cheerios and his juice- the most he's ever eaten! The rest of the day went pretty much the same way- he kept asking for food and ate most of what we gave him. I waited until the end of the day to email Robin (his nutritionist at CHOP). I gave her the rundown and at the end of my email I asked her if we could just go with it for a few days and see what he would do. She ran it by Dr. Blinman and called me a few minutes later, laughing at the fact that once again Wyatt has done things on his terms- the same kid that required TPN only a few months ago. They agreed to give us a week.
We had him weighed the next morning to determine what he lost because of the GI bug, not because of the drop in feeds. It was a good thing we did- he lost about 8 oz in 2 days. He continued to eat a ton (for him) over the next week. This past Friday was the official weigh in. We were really disappointed to find out that he lost another 9 oz. or so, bringing him back down under 21 lbs. A reminder of how many calories kids with CDH need! We thought he had to be getting the calories he needs, but it only ended up being 60% of his daily needs when she calculated his food journal. They were thrilled with his progress, but obviously not happy with the loss. We ended up having to add 3 of his gtube feeds back in. Disappointing after 10 days without the tube, but still much better than the 7 feeds we were giving him a few weeks ago. It's pretty crazy to see him go from being 100% gtube dependant to 40% in a matter of a few days. Today was the 1st full day we added the tube feeds back in and it doesn't seem to have affected his appetite. Let's hope we found the right balance for now!




Ryan celebrated her 4th birthday a few weeks ago. A big deal for us because it meant no more bloodwork appointments every 6 weeks! Four is the magic number when it comes to Hepatablastoma- we no longer have to screen her for this type of cancer! She will still go every 12 weeks for ultrasounds to screen for Wilm's Tumor, but even those are shorter (no longer looking at the liver) and she doesn't have to fast for them either. I think she's actually going to miss them- she loves going to "the big hospital" for her "baccinations". She gets lots of special attention, gets to pick out a special bandaid and sticker and usually gets a treat at McDonald's when she's done- what's not to love.


Onward and Upward Day at her preschool