Skip to main content
Just got a call from Jules. Jacob had an appointment with his GI doctor this morning ands they're concerned that he isn't growing enough. He said that this happens with CF kids. They get on the enzymes and they don't want to eat all of the time. I'm sure being 2 also has something to do with it.



But the concern is that he isn't getting enough calories when he eats. The doctor brought up the option of a feeding tube that would be surgically inserted into his stomach. This is the second time they've brought up this method of getting him enough calories. But they want to wait until his next appointment in January before we discuss this any further.



Talk about taking some of the wind out of your sails. This news just deflated me. I could hear a bit of sadness in Jules' voice. I know she got teary eyed at the doctor's office. When I was on the phone with her I was starting to get choked up. How much more does he have to go through at his age? DAMN!



You know, I've been thinking about how we're going to survive the next year after our savings runs out. Jules still can't go back to work, not if Jake has to have procedures done and spend the night at the hospital.



I want to ask, "When are we going to get a break?" But that sounds so selfish, doesn't it? Jake's the one going through it physically. I dread... DREAD the day he begins to understand that he's different and begins to ask questions about his disease. I know that he is strong. But how strong will I be? How will I face the truth on THAT day?



The day started off so simple. I was running and feeling weightless for an hour. I was walking on air. Now my legs feel like blocks of cement and my shoulders are touching the floor.





Aloha

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...

100 and Counting: Introducing The Epic Playlist

It started as all playlists do, an occasion that justified music for entertainment. In this case, it was a couples weekend getaway back in February. Super Dave proposed that he and I provide the tunes and we started a Spotify playlist: three songs at a time, no song repeats, no artist repeats. Dave would add his three, then text me that it was my turn. I would then add my three text him back. This cycle repeated until three hundred songs were compiled, and we drove off to Mammoth with our wives. A funny thing happened, though, it turned out we both enjoyed the challenge of trying to surprise or outdo the other so much that we continued building the playlist. We made a new rule of just three songs each a day and still no artist repeats. Soon, we came up with amendments to allow duets (The Emmylou Exception), multiple songs by the same band if said band had multiple lead singers (The Beatles Exception), or if there was a lead singer replacement that changed the artistic direction of ...

A Trip Through the "My 90's Tapes" Collection Pt. 6: Joan Jett and The Blackhearts "Up Your Alley"

Column 1, Row 6: Joan Jett and The Blackhearts, Up Your Alley In 1988, hair metal was on the rise and straight forward rock and roll was losing radio airplay. If the music wasn't a little slick and the mix didn't sound like the record was recorded in a sports arena, there was little chance of getting heard. There were exceptions, of course (Tracy Chapman comes to mind), but for the most part, loud and echoey was the sound of the day. At that time, Joan Jett and her latest version of the Blackhearts had been together for a few years and were clicking. The band members were Ricky Byrd on lead guitar and vocals, Kasim Sulton on bass and vocals, and Thommy Price on drums. Jett was coming off of co-starring with Michael J. Fox in Paul Schrader's film, Light of Day . Although the film wasn't a hit, it was high profile enough to bring the rock legend back into the public eye after years working the road and trying to rebuild the success of her early 80s albums, including the s...