A typical day in the life of Bennett
posted on 09/14/2009
8 am - Bennett wakes up "talking" (i.e. YELLING; it actually can vary between 7-9am, depending on how tired he is...unfortunately he will sometimes wake up earlier than normal, throwing up due to his reflux- not fun!).
8 - 9 am - Bennett "soaks" in his crib and watches his mobile (he sleeps on his tummy, so we flip him over onto his back and he is happy as can be to see his mobile....this usually involves lots of squealing and kicking! but sometimes he gets so excited that his reflux is triggered and he pukes again- not fun!). If it is a school day, we are heading out to school where he sees his friends and receives his PT and OT twice a week.
9 - 9:30 am -Bennett sits in his high chair, is hooked up to his g-tube pump to get the last of whatever milk did not go in his tummy overnight, and pushes the big yellow button to make his sheep go BAAAA or his cow go MOOOOOOO. He has very limited use of his arms and we are constantly working to get him to practice controlled use of his arms, especially "righty," since his right side is stronger than his left side. When we pull out the boombox in the morning, he sometimes gets so excited with squealing and kicking that it causes a seizure. We are still working with his neurologist to GET RID OF THOSE MEAN SEIZURES.
9:30 - 9:45 am - We get dressed, wash his face, comb his hair, and he's ready for the day!
10 - 11 am - We are usually heading to Speech Therapy, Saturday errands, or church on Sundays.
11 - 12 pm - After therapy we usually hit the closest drive-thru for some refreshment for mommy and then will do one errand like a run into Target or Walmart,get gas, pick up a prescription, have a dr. appt., etc.
12 - 1 pm - We come home and play on the floor, read books, and/or he hangs out in his crib watching his mobile (that is seriously his favorite place on earth) before getting ready for a nap.
1 - 3 pm - Nap time!!!
3 - 4 pm - Bennett wakes up from his nap yelling and we go in to flip him over so that he can wake up and "soak" with his mobile for a while while we get his milk ready for his dinner feeding.
4 - 5 pm - Bennett sits in his high chair or his stander with his sheep, cow, boombox, Lulu, and whatever other forms of entertainment need to occupy him while he is "fed" his dinner via g-tube. Due to his reflux, he gets a hefty dose of Prevacid before this feeding. Unfortunately a lot of times after this feeding he will still puke - not fun!
5 - 6 pm - Bennett hops in the stroller for a nightly walk. We really love this time because the sun is going down, it is cooler, people wave to us as they drive by (gotta love those friendly southerners), and B loves to hear all the noises of dogs barking, kids playing, and cars passing us.
6 - 7 pm - We come inside and B stands in his stander (with boombox, Lulu, books, and any/all other forms of entertainment) while I make a quick dinner and we eat.
7 - 8 pm - Bennett plays on the floor, works on sitting up, reads books, etc.
8 - 8:30 pm - Bennett gets a bath and lotioned up/stretched after the bath.
8:30 pm - We read books, brush his teeth, sing, and lay him on his tummy with his FAVORITE Baby Tad Frog who sings him to sleep. When we put on Baby Tad Bennett usually giggles and coos over and over....he loves Tad so much.
I then run into the kitchen to prepare his all-night pump feeding of formula and crush up his seizure pills so that I can mix them with his other liquid seizure med. I give those to him via his g-tube after he has fallen asleep. It is a pretty large dose, so I have learned that he has a higher likelihood of puking it up if awake, so I usually try to give it to him right after he has fallen asleep. He receives formula at a VERY slow rate all night long and usually does not wake up throwing up (although this has happened a few times, especially if he is sick with phlegm).
And that, friends, is a typical day in the life of our sweet boy. It is a true joy being his parents.
