fourkidsmom
New member
Daily schedule:
5:45 a.m. alarm goes off & 5 yr old daughter is off and running from her room. (she is an energizer bunny- but in the morning before her med's she is super charged-- she literally runs out of her room......)
6:00 a.m. --Get 2 teenagers up for school, dog out and feed
6:05 am. unhook Brady from feeding tube, clean out extension from tube.
6:05 a.m. Get husband up and his lunch made, and out the door at 6:30 a.m. Get all kids med's out and vest, breathing masks ready for 1st breathing treatment of the day.
7:00 a.m. Get Brady up and Breathing treatment going. 1st breathing mask is albuterol with pulimcort. Vest going with aerosal. 2nd mask is pulmozyme, vest still going and 3rd mask is HTS. Vest is done after 20 minutes. By the time treatments are done it is 7:45 a.m. (usually while mask and vest is going I try to hop in the shower real quick-- if I am lucky)
7:45 a.m. dress Brady and 5 yr old daughter. Brady is usually soaked from night feeding-- so shower him if really bad, but he usually takes showers at night. 5 yr old is still in diapers as well, Pi$$y morning usually......
8:00 a.m. chase Brady around to take his prevacid, zithromax, enyzmes, ADEKS, vitamin c, nasonex, lactulose, Vitamin E and get him some breakfast, which usually he doesn't want to eat. Make his lunch for the day.
8:20 a.m. chase my little girl around to give her keppra, vitamins and eye drop. Fight with her to wear her glasses.
8:30 leave to take Brady to school. Chase 5 yr old girl around the house to get her in the van to realize she just pooped her diaper and took off her socks and shoes again.
9:00 a.m. come home give 5 yr old girl adderall medicine.
Clean up house, laundry, check cf forum, make insurance phone calls, doctor calls, etc., I work from home so usually do 3 1/2 - 4 hours through out the day for that.
12:00 (Mon-thursday) get 5 yr old on the bus till she gets off the bus at 3:00 p.m. Yes I have 3 hours to continue to do never ending housework, order meds, insurance calls, pay bills, I do try to watch 1 hour of tv a day- the young and the restless. (I usually record it so I can get it watched in 40 minutes without commercials. -- every minute counts. ) Do errands, gets groceries, or what ever needs done. I do all the house work, etc.,
3- get 5 yr old off bus
3:35 pick up Brady from school. He has inhaler at school at 11:30 a.m. and 2 cans of pediasure and enzymes with a snack and lunch. I keep in contact with school about 3 times a week. Usually they need more pediasure, snacks, spoons, enzymes, applesauce or whatever. Lately I have been averaging picking up Brady early due to stomach aches, cough or fever about 3 times a month. The school knows me quite well.
3:45 p.m. do 3rd treatment for the day. Albuterol and broncho saline, and then HTS- vest also. (tonight we did a port flush before supper- fun fun)
4:45-5 supper -- give enzymes, miralax
6:00 do homework- which usually consists of 1 1/2 to 2 hours a night between all the kids.
kids play a little
8:00 baths,
8:00 give little girl risperdel and keppra medicines.
8:30- 4th breathing treatment of the day- albuterol with pulmicort, give lactulose.
9:00 p.j.'s on -- bedtime -- hook up brady for 9 hour night feeding. (gets 4 cans of pediasure thru the night- put in powdered enzymes)
I go to bed at midnight.
between 12:00 a.m. and 5:45 a.m. 5 yr old usually gets up 1-2 times during the night and Brady averages 3-4 times a week for getting up through the night and yelling "mom" for me to go in his room and he needs to go to the bathroom, or can't sleep, or has a belly ache, or what ever. Then I always go back to bed and husband snores and I can't sleep. I can't remember the last time to sleep 8 hours through the night........ maybe one of these days. I am not complaining like Victoria said it is just our life. You live it and it becomes normal.
That is pretty much a normal day for our house.
My 16 yr old has piano practice every week day night and my 14 yr old plays soccer (has since he was 5 yrs old). Brady also stated playing soccer last fall-- just starting out- more of learning the game.
Fourkidsmom
5:45 a.m. alarm goes off & 5 yr old daughter is off and running from her room. (she is an energizer bunny- but in the morning before her med's she is super charged-- she literally runs out of her room......)
6:00 a.m. --Get 2 teenagers up for school, dog out and feed
6:05 am. unhook Brady from feeding tube, clean out extension from tube.
6:05 a.m. Get husband up and his lunch made, and out the door at 6:30 a.m. Get all kids med's out and vest, breathing masks ready for 1st breathing treatment of the day.
7:00 a.m. Get Brady up and Breathing treatment going. 1st breathing mask is albuterol with pulimcort. Vest going with aerosal. 2nd mask is pulmozyme, vest still going and 3rd mask is HTS. Vest is done after 20 minutes. By the time treatments are done it is 7:45 a.m. (usually while mask and vest is going I try to hop in the shower real quick-- if I am lucky)
7:45 a.m. dress Brady and 5 yr old daughter. Brady is usually soaked from night feeding-- so shower him if really bad, but he usually takes showers at night. 5 yr old is still in diapers as well, Pi$$y morning usually......
8:00 a.m. chase Brady around to take his prevacid, zithromax, enyzmes, ADEKS, vitamin c, nasonex, lactulose, Vitamin E and get him some breakfast, which usually he doesn't want to eat. Make his lunch for the day.
8:20 a.m. chase my little girl around to give her keppra, vitamins and eye drop. Fight with her to wear her glasses.
8:30 leave to take Brady to school. Chase 5 yr old girl around the house to get her in the van to realize she just pooped her diaper and took off her socks and shoes again.
9:00 a.m. come home give 5 yr old girl adderall medicine.
Clean up house, laundry, check cf forum, make insurance phone calls, doctor calls, etc., I work from home so usually do 3 1/2 - 4 hours through out the day for that.
12:00 (Mon-thursday) get 5 yr old on the bus till she gets off the bus at 3:00 p.m. Yes I have 3 hours to continue to do never ending housework, order meds, insurance calls, pay bills, I do try to watch 1 hour of tv a day- the young and the restless. (I usually record it so I can get it watched in 40 minutes without commercials. -- every minute counts. ) Do errands, gets groceries, or what ever needs done. I do all the house work, etc.,
3- get 5 yr old off bus
3:35 pick up Brady from school. He has inhaler at school at 11:30 a.m. and 2 cans of pediasure and enzymes with a snack and lunch. I keep in contact with school about 3 times a week. Usually they need more pediasure, snacks, spoons, enzymes, applesauce or whatever. Lately I have been averaging picking up Brady early due to stomach aches, cough or fever about 3 times a month. The school knows me quite well.
3:45 p.m. do 3rd treatment for the day. Albuterol and broncho saline, and then HTS- vest also. (tonight we did a port flush before supper- fun fun)
4:45-5 supper -- give enzymes, miralax
6:00 do homework- which usually consists of 1 1/2 to 2 hours a night between all the kids.
kids play a little
8:00 baths,
8:00 give little girl risperdel and keppra medicines.
8:30- 4th breathing treatment of the day- albuterol with pulmicort, give lactulose.
9:00 p.j.'s on -- bedtime -- hook up brady for 9 hour night feeding. (gets 4 cans of pediasure thru the night- put in powdered enzymes)
I go to bed at midnight.
between 12:00 a.m. and 5:45 a.m. 5 yr old usually gets up 1-2 times during the night and Brady averages 3-4 times a week for getting up through the night and yelling "mom" for me to go in his room and he needs to go to the bathroom, or can't sleep, or has a belly ache, or what ever. Then I always go back to bed and husband snores and I can't sleep. I can't remember the last time to sleep 8 hours through the night........ maybe one of these days. I am not complaining like Victoria said it is just our life. You live it and it becomes normal.
That is pretty much a normal day for our house.
My 16 yr old has piano practice every week day night and my 14 yr old plays soccer (has since he was 5 yrs old). Brady also stated playing soccer last fall-- just starting out- more of learning the game.
Fourkidsmom