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Eats and thoughts
An overall update: Eli started eating a teaspoon of Pedialyte from the bottle yesterday at 4 p.m. They continued that pattern every four hours until this morning. I fed him a teaspoon of mom’s milk...
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Santa is watching
Laila was being just the teensiest bit naughty this morning. I turned a Santa figurine toward her that my dad sent in the mail this week. “Santa’s watching,” I said. “He’s got his eyes on you.” Laila...
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Eli’s fund
In a fit of manic “to do,” I did a little online research and created a GoFundMe page for Eli. The day I made the fund was the day after we found out my son had cystic fibrosis. The news, initially,...
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Eli and Eli
Eli’s got a new roomie, also named Eli. His mom’s name is Jessica. She said it would be OK for me to mention them here. It’s been nice to have a chatty mom in the NICU room, since it can get a little...
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A different kind of life
I spoke to a woman named Pam who has two sons with cystic fibrosis. They have the same type of the disease that Mark and I unknowingly passed along to our son, the f508 mutation. Eli has a copy from...
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Applesauce and enzymes
Eli gets enzymes in applesauce before every meal. You wouldn’t think you can give a new baby applesauce, but apparently, you can. He puckers a little bit but really seems to like it. The enzymes are...
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Big gut, little problem, strange Christmas magic
Whew, the little guy caught a break today. Doctors were concerned Eli’s large intestine, aka colon, could have been sealed shut in one spot or more. That’s a problem that would have required surgeons...
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Eli to realize he doesn’t live at hospital
Great news – little man’s coming home today. I have had zero time to write these past few. We moved to a part of children’s called “The Village,” which is nothing like the creepy (and dumb) M. Night...
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Coughing in the craft aisle
I cringe as a woman hacks all over the scrapbook paper. She does not cover her mouth. Naaastyyy. I mutter this to my 2-year-old, who is stopping every other step at Michael’s. I push my cart onward,...
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The real way I found out my son had cystic fibrosis
EliI wanted to share the real way I found out my son had cystic fibrosis. In the scheme of things, it’s a blip. It was an infraction perpetrated by a young and inexperienced worker. Or was it an...
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