We had a nice weekend. Seamus went to two birthday pool parties and had a great time. He's also getting excited about our upcoming trip to Los Angeles and Disneyland this weekend.
The change in his feedings is still not going well. He has not slept through the night once since we've made the change and his appetite has severely decreased, I think partly because his stomach hurts and partly because he's full from the extra tube feeds. His stomach has been distended and gassy because he's not getting enough enzymes at night and yesterday he had a huge watery accident right in the middle of family room which embarrassed him terribly. He almost started crying and said "This can't happen at Lilly's birthday party!" He actually asked to wear a diaper which he hasn't done in the daytime for months.
I'm a little worried because every time we plan a trip, something seems to happen. We have lost hundreds of dollars in canceled plane tickets and hotel rooms. I'm keeping my fingers crossed and we're still tweaking the regimen. Hopefully by Friday, he'll be doing better.
Next post, I promise, no more poop talk!
2 comments:
I will keep my fingers crossed for you guys as well. I haven't planned any trips (other than Houston and you know how that went) because of my fear of her getting sick.
Give Seamus a big hug from me and Olivia...give one to yourself while you're at it.
Big hugs to you and to Seamus, bless him. It's such a lot for a little boy to cope with emotionally, but he does so great. He's a little hero!
I am hoping and praying that you do get your holiday, it sounds fabulous!
I know what you mean with booking stuff and having no idea whether it'll actually happen, but if you never book anything, then you'll never go anywhere, so you've got to try now and then. But whenever I make any plans, friends/family know that it depends on the kids being well.
Hugs,
Becky, Seren & Dylan xxx
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