We try each day to maintain a sense of "normal". Bedtimes, naptimes, dinner times... but each moment is special. Each moment we are trying to engrave in our memories.
Bedtime has be coming earlier and earlier for Henry. This was our bedtime routine at 5:45 last Thursday.
Lucas spending a few extra minutes snuggling with Henry.
Getting ready for a bath. We wrap up his PICC and make a "marshmallow" arm. His rash is horrible looking, but mostly it hasn't bothered him. Recently, he will say "ouch" every time we pick him up. And tonight, he said, "please stop hurting me". It breaks my heart.
Post-bath snuggle on dad.
Henry's breathing has gotten more wheezy, so we are giving albuterol nebulizers. He loves how the steam come out his nose.
Tic-Tacs and Albuterol... cause that's how he rolls!
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