Tuesday, April 5, 2011

A Day In The Life

The following events took place on Tuesday, April 05, 2011. No animals were harmed during the filming of this motion picture.

3:45 a.m.
Elijah wakes up crying. I, his father, hear him on the Appliance Formerly Known As Baby Monitor. We burp through the feeding tube to get rid of the painful gas, get a new diaper, then rock back to sleep. Dad is back in bed by 4:30.

7:00 a.m.
All four Ramiri wake up. Dad makes two bottles of formula, one for now and one for at School No. 1, AKA The Little Light House. Elijah gets dressed, watches the Max Fleischer "Superman" cartoons from the 1930's, gets his prosthetic legs put on, and goes to Mom's car.

10:00 a.m.
Dad would love to go to stay asleep, but he has to go downtown and see if an event program is finished printing. It isn't. 11:30 a.m. Pick Elijah up from The Little Light House and go to Saint Francis Children's Hospital. (Elijah starts crying, until I tell him, "We aren't going to see the doctors. We're going to a party!") There's a banquet being held for donors to the Oklahoma Family Network. The News On 6 (CBS) is there, filming all the kids in a row, wearing matching OFN T-shirts. Most of the kids are a bit camera-shy, but when the anchor gets to Elijah and asks his name, Eli spots the videocamera and shoves his face into the lens. "CHEESE! CHEESE! CHEEEEEEESE!" Everyone laughs hysterically. The anchor asks, "Do you like the camera?" Eli answers, "Yes I do! What's your name?" Twenty minutes later, it's time for Elijah and the other kids to serve cupcakes to the banquet attendees. Meanwhile, the emcee for the event reads a paragraph to the crowd about Elijah's condition, struggle and current triumph. Eli waves to the crowd and says hello. Everyone laughs hysterically. He gets his picture taken with the current Miss Oklahoma, as well as Volt, the fox-themed mascot for the Tulsa Shock. His highlight of the day is when he goes down the long, long tunnel to the parking garage. Elijah loves tunnels.

1:30 p.m.
Pick up Elijah's home health nurse, Jodi, at the Ramirez home. Fill the gas with car.

1:50 p.m.
Drop Elijah and Jodi off at School No. 2, AKA Washington Elementary in Sapulpa. He receives occupational therapy (focusing on adaptive technology in the classroom) with Ms. Julia. Meanwhile, I go to Ace and pick up repair parts for an electrical problem at the house, all the while speaking on my cellphone with the authorization coordinator at Therapy Works, where Elijah attends each week for five hours (on every weekday except today). The call is interrupted by our case worker at the Oklahoma Health Care Authority, who has questions about our Therapy Works situation. Everyone's a bit psychic today.

3:00 p.m.
I take Elijah home, cut his hair with the no. 3 guard, trim his neck and sideburns, then give him to Jodi for a bath. He must finish the bath by 3:30 so he can meet with Miss Amanda, our home-visit physical therapist (focusing on mobility and strength training with the prosthetic limbs). Meanwhile, I go to School No. 3, AKA Freedom Elementary in Sapulpa. I meet with Elijah's soon-to-be classroom teacher Miss Kim, who is also Eli's speech pathologist. Eli receives three sessions of state-funded therapy during school hours, and we might be attending Freedom four days a week, starting as soon as next week, if all the Medicaid contracts land correctly. Elijah's sister, Sophia, attends Freedom, and I grab her and take her home at 3:50.

4:30 p.m.
Elijah is just finishing his third formula bottle of the day, at the same time he's wrapping up his physical therapy. Seriously, he's standing in a walker taking step after step, while Jodi follows along, syringe in hand allowing gravity to pour his formula into his tummy through the feeding tube. Sophia rushes to have a snack and gather her piano books and dance uniform (tights and shoes). For reasons you'll soon see, I must gather up Elijah and Jodi and take them with us to Sophia's voice and piano lesson. (Normally, Eli would stay at home with the nurse.) We arrive at Miss Missy's home for lessons; Sophia receives instruction in the living room, while Elijah watches cartoons and receives his fourth bottle of food in Missy's den. He also changes out of his sporty tank top and puts on a collared shirt. We finish strong by watching Sophia perform the singing and choreography for her next big recital piece. Elijah claps the loudest for his sister.

6:15 p.m.
We drive two blocks to Hardesty Library where the Vet Sette (a Tulsa club for Corvette owners) is presenting a check to The Little Light House for over $6,000. Elijah and one of his classmates is on-hand to receive the check. They ask me to say a few words, and I stand in front of about 300 people and introduce Eli. While I'm trying to speak, Eli (in my arms) keeps waving and saying "Hi! Hi! Hi!" He blows kisses and blows hugs. I tell the crowd, "When Elijah first started attending the Little Light House, he couldn't sit up, couldn't speak, could barely smile. With therapy and classroom instruction, they helped turn him into the attention hound you see today." Everyone laughs hysterically.

7:00 p.m.
We drop off Sophia (who has changed clothes in the moving car) at dance rehearsal. Elijah asks, "Where is Sophia going?" For the very first time since he woke up at 7:00 a.m., Eli is sad. He's hit a wall, and so have we. "I want to go home and rest," he tells us, holding back tears. We arrive at home. Despite being super tired, he fights off sleep and watches some more cartoons. He's earned a little TV time, says his paternal guardian.

9:00 p.m.
Elijah lays down in bed with Mom and Sophia. Everyone's laughing and playing, and then, as soon as the lights go out, the boy is out like a birthday candle. His dad carries him to his crib, where Jodi the Nurse finishes his fifth bottle of the day. This reinsertion of the tube usually bothers him to some degree, or at least causes him to fuss, but he's so tired he doesn't even wake up during it. We turn off the lights in his room, and turn on the inappropriately named Baby Monitor. Soon after, Jodi leaves for the night, ready to return tomorrow at 2:00 p.m. so we can get ready for his 2:45 therapy appointment (focusing on forearm/digit extension and strength).

10:30 p.m.
Elijah wants his pacifier, which has fallen out of his mouth and gone missing in the dark. I've been asleep for about an hour, and the power-nap is enough to keep me awake. I talk to my brother, get some design work done on the computer, change another diaper for Eli, and type this post for you people, whoever you are.

1:00 a.m., the next day
We're done. ..... For now.

So how was your day? As busy as Elijah's? How about when you were four? Hopefully you now have a better idea of how much harder, and at the same time more awesome, Elijah has it than his peers. For better and worse, and nowhere in-between, Elijah is now a full-time superhero. Pray for Eli!


Friday, April 1, 2011

The Postman Always Walks Twice

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