Kathy Fisk lives in the Sachse area with her husband David and their 2-year-old twin boys Miles and Mason. Kathy does contract work for a curriculum company, and David works as a senior systems engineer for a video gaming company. Miles and Mason have special needs stemming from being born as 25-week micro-preemies and are primarily fed using feeding pumps through Mickey buttons. Miles is trached, and in April 2011, they found out Mason had a rare form of liver cancer, hepatoblastoma, and he subsequently had six rounds of chemotherapy and major liver resection surgery. Today, both boys are getting healthier and stronger.
6:50AM Alarm goes off. No day nurse for Miles today. Lucky for me, my husband relieves the night nurse while I grab a few more minutes of quiet time. I take a few deep breaths and hop in the shower while Mason is still asleep.
7:20AM I wake up Mason and quickly throw on his school uniform. He gets water through his Mickey button before we head out the door.
8AM I drop off Mason at Montessori school. Because of the long Labor Day weekend, he tears up a little as he sees me head out the door.
8:10AM I realize I have a few minutes to grab Starbucks.
8:30AM Run into the house and Miles is all dressed and ready to go. This morning he has applied behavior analysis (ABA) therapy.
9AM ABA/play therapy focuses on building Miles’ receptive and expressive language. He can say “Mama,” “Dada” and “ball,” among lots of babbling, but he’s not talking with intent. The trach should not be prohibiting speech, so we’re concerned. He is also starting to develop autistic tendencies. The therapist and I discuss involving a developmental pediatrician for a formal evaluation. Miles doesn’t babble much and wants to spin toys instead of “work.” He would spin objects for hours if we let him.
11:3AM Drop Miles off at home where Daddy greets him. I jump back in the car to get Mason.
11:40AM Mason gives me a smile and then starts to tear up. I scoop him up and talk to his teacher about the morning. No crying until now, she says. He worked on the computer and did great with his Montessori lessons. Mason yells “Bye-bye friends!” as he eagerly runs out the door.
12PM Get home and Miles’ occupational therapist has arrived. I hook up Mason to his lunch feeding and quickly make myself mac ’n’ cheese. Checking email, I discover that a customer wants to move our 1pm call up to 12:30pm. This is a win-win, as I have to get Mason to Medical City by 2:30pm.
12:30PM Occupational therapist leaves. Daddy starts Miles’ lunch and breathing treatment as I dial in for my call.
12:45PM Conference call is over, so I quickly scarf down lunch. I try to lay Mason down for a nap. He never falls asleep.
1:30PM Mason and I head to Medical City for his post-treatment Alpha-Fetoprotein (AFP) level measurement. They check this marker to ensure the cancer hasn’t come back.
2PM I’m disappointed that Mason weighs 10.2 kg, down from 10.5 kg last month but overjoyed that his AFP level is only 3.4. We need this number to stay below 10. This is great news, so we talk about taking his port out before the end of the year. It has been exactly one year since his last chemo treatment.
3PM We go to Buy Buy Baby. I know I must wean Mason off his pacifier soon, but he screams, “Monkey! Monkey!” I grab Monkey One, totally caving in.
3:30PM We get home and Daddy is in the office, listening for Miles’ pulse oximeter to go off as he works. It does not, as he is in a deep, restful sleep and his breathing is steady. When Miles sleeps, sometimes his oxygenation level dips down and we need to give him O2. I feed Mason 100 cc’s of PediaSure, hoping he’ll finally fall asleep.
4PM Mason is still wide awake. Miles is up from his nap and ready to play, having just eaten while napping (a bonus of pump feeding; the boys get nutrition while asleep, spending less time sitting in their high chairs). I sneak in two phone calls: one to the surgeon who did Mason’s liver resection to make a port removal appointment and another to the developmental pediatrician to do an autism evaluation.
4:30PM Family time! Daddy and I play with the boys. Usually this happens in the evening, but it’s a special treat to have Daddy home. The boys love it.
5:30PM Bath time. We color on the tile and play with tub toys. Afterward, the night nurse and I do Miles’ nightly trach care routine.
6:30PM Mason is eating pureed bananas, mini chocolate chips and a vanilla wafer. We expose the boys to oral feeds daily. They both exhibit oral-motor dysphagia. Mason eats a few very specific foods; Miles doesn’t eat anything with texture. A few bites and he’ll be done. Seeing him eat makes me start thinking about my dinner.
6:40PM Mason has dumped his pureed banana upside down on his tray. It’s now all over his just-washed hair.
7PM The nurse plays with both boys while I cook dinner.
7:30PM Feed the boys their last waking meal. Both get continuous feeds at night to give them the rest of their calories.
8:30PM The boys are still up and running around. We start our bedtime routine: brush, book and bed.
9:45PM Mason finally falls asleep in my arms while watching TV.
10:30PM My little night owl, Miles, is still awake, although he’s been in his crib for more than an hour now. Getting ready for bed to see what the next day will bring!
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