I'm always amazed at what these beautiful CF kiddos go through every day. I dunno how many times I've made the comment that Kaleb, at 20 months old, has taken more medcine than I have probably my whole life and I'm 30.
Here's a typical day for our Kaleb:
8:30 am - This is typically around the time Kaleb wakes up.
Diaper change
Try to chase him around and get him to take 5 mls of Ciprofloxacin
Give him a cup of juice and make coffee
9:00 am - By the time I'm done with that its usually around this time.
Prepare small amount of apple sauce with his Enzymes opened and mixed in
Chase him around and do humiliating things to get him to take Enzymes
Breakfast-today-french toast sticks lots of butter/rice cereal extra butter
9:30 am - Snuggles up on the couch with mommy and watches cartoons/gets more awake
Good and awake he runs wild and brings half his toy room in the living room
10:30 am - The pooing begins-Cipro gives him diarreah
Diaper change
11:00 am - 2 hours since his Cipro so he can now have his other medicines
It's also time for his Vital Jr. supplement drink
Chase him around and get him to take 2 mls of liquid Zantac
Chase him around and get him to take 1 ml of Aquadek if he won't take it
then I put it in his drink.
Chase him some more to get him to take a vitamin D pill
Prepare his Enzymes in apple sauce once again and the chase proceeds
Shake up a Vital Jr. and add 1/8 tsp. of salt--Shake, shake, shake
He sits up on the couch and enjoys his drink
11:30 am - He plays with toys
12:30 pm - Try to talk Kaleb into coming near me while I'm holding his Vest.
Try to put the vest on him while he throws a fit..breaks my heart.
Watches cartoons while shaking like crazy for 30 minutes.
(I pray to God he falls asleep) He almost always does...(ty God)
Try to take his vest off without waking him up (almost always succeed)
Breathing treatment time-Tobramycin-usually takes about 30 - 40 mins.
Almost 2:00 pm - Success! All done :)
Try to turn off loud, humming machine and not wake Kaleb up.
Lay him down in his bed.
Bask in silence--happy dance ;)
3:00 pm - Pretty much always wakes up around this time.
Enzymes in applesauce chase is on--mommy wins though!
Time to eat-today-Vienna sausages, cheetohs, 2 nilla wafers, go-gurt
3:30 pm - More play time
I usually take him outside for a little bit or swim in his pool
Not suppose to be in sun alot since on Cipro so we haven't been swimming
Today I set up his neat tunnel that hooks on to a school bus and another
box that he climbs through, he had a great time.
Then we played with his big Lego blocks for awhile.
5:00 pm - Time for another Vital Jr.
You know the drill now lol--Apple sauce and Enzymes chase.
Sits on the couch and drinks it.
6:00 pm - Chase Kaleb with a syringe of 5 mls of Cipro
Not happy with me at all but I get him to take it.
We usually color and draw or play with his playdough for awhile.
7:00 pm - Another round of chase Kaleb with applesauce and Enzymes.
Dinner-today-Mashed potatos with lots of butter, salt and some cheese,
carrots, brownie.
Snuggles up on couch with me, I read books to him, watch cartoons, just
relax.
9:00 pm - One last stand for the applesauce and Enzymes....they always win.
One last chase to get 2 more mls of Zantac down Kaleb.
Shake up another Vital Jr. and let him drink it.
Plays a little bit and gets good and cranky/sleepy.
10:00 pm - I always give him about a hour after food/drink before The Vest.
He is NOT happy with me at all when he sees I'm holding his vest.
A huge fit is thrown...finally wrestle the vest onto him.
He zonks out after about 5 minutes of shaking/vibrating.
Another round of breathing machine.
11:00 pm - An exhausted momma lays down her exhausted baby, covers him up and
watches him lovingly :)
1:00 am - Hear Kaleb whining and moving around so I check on him, rub his back
He falls back asleep. Side effect of Cipro is nightmares and insomnia so
he doesn't sleep too well on it.
3:00 am - He wakes up crying and stands up in his bed until I come get him.
Snuggle him up in the bed with me and he falls back asleep.
He doesn't give me much sleep with all his thrashing around and whining.
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