Skip to main content
Did not workout this morning. Got home at 2:30 from the audio lay down. Everything sounds great. I'm very excited.



Jacob had an appointment today at Children's Hospital with his pulmonary physician; Dr. Margetis (sp.) Julie took him while I had Sophie visit me at work. I love having her visit. She's so much fun to watch. And she's very sweet.



Jake's appointment didn't go as well as planned. He hasn't grown in the 8 weeks that have passed between his last visit. 8 weeks! And he hasn't grown an inch or gained any weight. It's like I don't know what to do. We feed him anything with fat in it. And we have done everything his doctor's have laid out for him. And still he doesn't grow.



You can't realize how distressing this is to hear when you're a parent. And the doctor mentioned extreme situation in which some kids get bags inserted into their abdomens so that they can have night feedings.



When Julie found Sophie and me as we walked out of McDonalds, I took my sleeping son in my arms while Julie has some lunch. After she told me everything I was on the verge of crying. I held this innocent little boy and I wanted to squeeze him so tight that the CF would ooze out of him. Wishful thinking, I know.



We have been so blessed that his lungs remain healthy (I almost don't want to say those words out loud), but he is under nourished and you can't help but feel like you're doing something wrong. Yet, we're doing every damn thing we know how to do.



There's nothing you can do to detect that they're not growing. I honestly thought he'd grown taller. He FEELS bigger to me. I just can't fathom how he hasn't grown an inch.



But, this is the disease. This is the torment we face every freaking day.



You only want your kids to be safe and healthy, you know? Is that too much to ask?





Comments

Popular posts from this blog

MARATHON FOOTNOTES (for those who didn't think I would really footnote a stream of consciousness thought): Footnote #1 Academy Award Winning Best Picture Films from 1969 to the Present: Midnight Cowboy, Patton, The French Connection, The Godfather, The Sting, The Godfather II, One Flew Over The Cuckoo’s Nest, Rocky, Annie Hall, The Deer Hunter, Kramer Vs. Kramer, Ordinary People, Chariots of Fire, Gandhi, Terms of Endearment, Amadeus, Out of Africa, Platoon, The Last Emperor, Rain Man, Driving Miss Daisy, Dances With Wolves, The Silence of the Lambs, Unforgiven, Schindler’s List, Forrest Gump, Braveheart, The English Patient, Titanic, Shakespeare in Love, American Beauty, Gladiator, A Beautiful Mind, Chicago, Lord of the Rings: The Return of the King. Footnote #2 Members of the band YES, from 1969 to the present: In 1969, Yes is formed with Jon Anderson on vocals Peter Banks on guitar, Bill Bruford on drums, Tony Kaye on keyboards and Chris Squire playing bass. This group records...

Basement Songs: "Golden Gates" by John Cougar Mellencamp

I’m not sure when my brother, Budd, bought his copy of John (then) Cougar Mellencamp’s “Uh Huh”. The cassette just showed up in the basement on summer, years after its release. Like most of America, I was a big fan of “Pink Houses”, and I was thrilled that now had copies of his other big hits from that album, “Crumblin’ Down” and “The Authority Song.” At this point in his career, Mellencamp was ready to establish himself as a legitimate artist, hence the use of his real name (the record label wouldn’t allow him to ditch the “Cougar” until years later for fear record buyers may get confused….huh?) In addition, there was the radio staple (at least in Cleveland), “Play Guitar”, on side 2, which borrowed heavily from Them’s “Gloria” (Mellencamp often slipped the “G-L-O-R-I-A”’s into his concerts during that number). The rest of “Uh Huh” is filled with more of the same 60’s garage band type of rock that Mellencamp champions, as well as one of Budd’s favorite tunes, the John Prine co-pe...

In Praise of Kanopy

When I was 17, I worked at American Video, a small business housed in the Great Northern shopping strip. My time there was short, as was American Video’s lifespan. The days of the mom-and-pop video stores were cycling out. Blockbuster had just opened in my hometown and within a couple years, American Video, as well as the store where I first fell in love with movies, First Run Video, would shutter their doors. What I loved about these indie video stores was the variety of choices and the limited number of copies of movies each store had. Come in looking for Back to the Future and it’s already rented? You strolled the aisles until you found something similar like Innerspace , or something completely different, like And Now for Something Completely Different, Monty Python’s first movie. Blockbuster, and its cousin Hollywood Video, may have offered more copies of movies, but they didn’t always have the quality. Maybe your Blockbuster was different.   When Netflix and the stre...