This morning started at 6:30. Joe’s alarm went off, he got up and I stole an extra 15 minutes in bed. On Mondays Maceo has physical therapy at eight o’clock and then speech across town at ten. I know if I am in the car, going down my driveway at 7:15, then I will walk onto the sixth floor therapy unit at exactly 8. I usually roll quickly in at ten after. In this new post-Maceo world we’re living in, many times throughout the day, I find myself playing a rather intense game of, “How many minutes can I squeeze out of five minutes?” It’s kind of insane but sometimes it actually works. Anyhow, if Joe is around before the kid and I leave the house, he helps me load the car with our daily travel gear which is comprised of the following: Ormesa New Bug supportive chair, which normally used in the house, snaps to a stroller base and doubles as a stroller chair, iPad with stand, tray which attaches to chair, suction machine to keep airway clear when needed, bottle of homemade formula in cooler, food syringe, paper towel, diapers, bibs, diaper cloths and shoes which I usually put on him right before we get out of the car. It’s a lot to lug around but much easier than what we brought around during the kid’s first year.
At that time he was on oxygen during the day, so we carried around a small O2 tank in a black shoulder bag, and a food pump through which he ate via a little feeding tube in his stomach called a Gtube. Thankfully, he now needs O2 only very occasionally at night or when sick. We used the food pump until he was about six months old. After that he started getting his food through 20 ML food syringes which fit directly into his Gtube. Joe used to say, as we were getting used to things, how nice it would be if he could have a Gtube. “Food is such a pain the ass, you gotta stop what you’re doing to eat all the time, and it would be so much easier to just stick it in there.” I really love food so I don’t agree but one thing is certain. In terms of getting food into our kid, we do have it a lot easier than many parents. While I really wish he WOULD fight with me about what he wants or doesn’t want to put his mouth, barring that, the Gtube is not that bad at all. Where a lot of parents have to fight to get their kids to eat and make sure they get enough, and navigate through their likes and dislikes, and sugar, and food allergies etc, what we do is a walk in the park. Another ongoing game I play is to look for how good we have it. Maybe that’s weird but, it helps prevent the other game of how this whole thing really sucks.
While at physical therapy, I got a call. Our speech therapist is sick today, so no speech for the kid. We came home, and Joe took over kid duty. One thing that is new to our regimen as of three weeks ago, are a set of functional neurology exercises. These are a series of movements that take about 7 minutes to do, which provide vestibular input to Maceo’s brain. The idea is for these movements to activate the specific parts of the brain where the kid got hurt. The more and the longer those areas are activated, the more repair can and will occur there. Dr. K, our functional neurologist in Oceanside, asked us to do them twice every hour, with a minimum of 12 cycles a day. He said he is very optimistic based on how Maceo reacted to the movements in the exam. Joe and I kind of enjoy doing the exercises and the kid does too, so though we don’t know exactly their outcome, at the very least, they are another set of stuff we do together.
So right now, Joe has taken over for me with Maceo, doing the exercises so I could sneak in here and write a for a bit. It really bugs me when he has to miss appointments, but I’m also glad for the chance to write. Now it’s time to warm up my voice and get out the door. I’ll be in the studio today with my friends Lucy Woodward and Michelle Lewis. We have a new band called The Goods.
More to follow..