Hi All. Sorry for the lack of posts, but as you can imagine we've been a bit busy! Things are starting to get into a something that looks like it might be a routine. THANK YOU to everyone who has (and will) come over to help. I may have lost my mind without you!! Really, I'm not sure how I would have managed alone with Chris at work.
Ethan has been extraordinarily fussy since he has been home. Every transition is difficult. Every diaper change, every bath, ever bottle is difficult and filled with crying - mostly on Ethan's part... Thankfully he had a great day today with two great naps. Hopefully he will be turning the "corner" here soon. The biggest problem with all of this is that he has not been eating enough. Seriously, Ethan, not eating enough? Some days he meets only half of his daily intake target. It's a struggle to get all of his meds in since he doesn't want to eat. We've finally figured out that he does well in the mornings (that sadly for me often start at 5 am). He is fussy and tired and ready for bed at 5 or 6 pm. Ugh. At least he is sleeping though. Last night I didn't have to wake up for a single alarm from his oxygen monitor. What a joy that was!
I better get myself to bed!
I hope it is getting easier for you. Are you getting enough sleep? I sure hope so. Is Ali oksy now with him being home? We miss you guys and hoping all is getting some easier with all the scheduled meds/breathing treatments.
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I just checked in to see what Ethan is up to and hooray! I'm so happy to hear he is home. May all continue to go well. We'll send up a little prayer that it does. All our best from Thomas and family
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