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April 9th
It’s been a few days of consistency, and we are loving every bit of that. After so many ups and downs, steady days feel like such a gift. Dad was in town for a few days, and the boys and I soaked up every second of it. Those moments together mean everything right now. Both boys are continuing to eat and make progress. Declan is moving at his own small and steady pace, now up to about 4–5 mLs a day. We are so proud of him for continuing to push forward. Colton is officially at
kylielehr
5 hours ago2 min read


Easter Weekend Update
Easter weekend was such a special one for our family. Dad stayed with the boys while I went home for a bit to spend some much-needed time with Riley (and soak in a little bit of normal life). It meant a lot to have that balance, even if just for a moment. On Easter, Grandpa Moravec and Grandma Cindy came to visit the boys. It was such a sweet visit, and both boys did amazing, truly on their best behavior the whole time. Dad is staying in town with them for part of the week, a
kylielehr
3 days ago2 min read


April 3rd
Today was such a good day for both of our boys. Colton did amazing. He got his oxygen down to 50% and was so comfortable that we decided it was finally time to put him in clothes. We spent about an hour with him, changing his bedding, getting him dressed, and just being with him and he handled it all so well. Seeing him like that… he looks so big and so grown-up. It’s one of those moments we will hold onto forever. Declan had a really great day too. He made it down to 21% ox
kylielehr
6 days ago2 min read
April 1st - April fools day!
Today had a little bit of everything…stress, laughter, and small wins that we’re holding onto tightly. Colton has been pretty backed up since Friday, and the team was preparing to do a pretty uncomfortable “clean-out” that we were all dreading. We knew he wouldn’t like it one bit, and honestly, neither would we. It’s so hard watching him go through these things. But in true Colton fashion… he pulled an April Fools’ Day trick on all of us. Right before they started, he pooped
kylielehr
Apr 12 min read
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