Jons Daily Schedule..

After my last post..i thought it might be helpful for you to better understand why we have such chaos in our life..by giving you jons daily schedule..so here its goes..
12am-Cath, rotation in bed and give meds(baclofen)
2am- rotation in bed and meds
4am-Cath and rotation in bed
6am-rotation in bed and meds
8am-Cath, rotation in bed, dressed and breakfast
9am-Meds
10am-rotation and meds
1130am-transfer to wheelchair
12pm-pressure release for 5 minutes (meaning i have to get onto the couch and tilt his wheelchair back into my lap to relieve pressure so he doesnt get a pressure sore)
12pm-lunch and meds
1230pm-pressure release for 5 minutes and then range of motion exercises
1pm-pressure release for 5 minutes
130pm-pressure release for 5 minutes
2pm-pressure release for 5 minutes and meds
230pm-pressure release for 5 minutes
3pm-pressure release for 5 minutes and meds
330pm-pressure release for 5 minutes
4pm-cath, pressure release for 5 minutes and meds
430pm-pressure release for 5 minutes
5pm-pressure release for 5 minutes
530pm-pressure release for 5 minutes
6pm-pressure release for 5 minutes, meds and dinner
630pm-pressure release for 5 minutes
7pm-transfer back into bed and start bowel program
730pm-transfer jon onto commode chair for continued bowel program
8pm-transfer jon back onto bed, change clothes, bath, and meds
9pm-meds
10pm-meds and rotation in bed
12am-Cath, meds and rotation in bed

so as you can see - its VERRRRY busy and LOTSSS of chaos in our life right now..mix his schedule in with him having physical therapy at the home 3 times a week and occupational therapy 3 times a week, plus 2 doctors appts which will take a total of 3 hours getting there, waiting and returning home...

i have to help with all of that AND then help the 2 older girls do their homework from 3-4pm, try my best to have rachel practice her piano each day, feed girls breakfast, lunch and dinner, make them do their chores for the day, try to keep the house quiet for jon, change diapers, get juice cups and snacks, keep an eye on jon so that he doesnt black out or pass out, constantly ask if he's okay or does he need his feet up..if he does i have to be right there to do so or ill be in a HUGE mess, feeding him, getting a drink of water when he needs it, answer the telephone, work on our business by answering phone calls, checking and responding to business emails, staying on top of our business accounting, making sure and paying all business bills on time, getting my mail each day, staying on top and paying our home bills on time, getting girls bathed and showered, teeth brushed, prayers, fhe, scripture reading each day, fighting the fires between 4 young girls each day, working with a 2 year old who SCREAMS if im not right by her side constantly, laundry, washing all of jons towels, sheets, pillowcases, clothes, as well as all of our clothes, having all the neighborhood kids constantly in and out of the house, back and forth from the backyard to the front yard, making sure becca doesnt go outside and into the street, working on getting social security to help us out- which working with the government is a NITEMARE, keeping everything filed and organized regarding jon, bills, insurance stuff, charts, medical records, social security stuff, equipment manuals, numbers for when equipment breaks down, state disability information, TRYING to find a caregiver who can help me, figuring out what im going to do for 3 of my daughters bday's coming up this month and next month, trying to prepare for 2 weddings and the hales family cruise that had already been booked and paid for before the accident occured which will all occure in the month of june and THEN wanting some alone time by myself and on the computer but too tired so i just want to go to bed instead...

so as you can see...my life and jons life is extremely difficult right now, maybe people dont really know just how hard it is..i hope this may help you to realize when people ask "what can i do?"..that all i can say is..theres so much i dont even know where to start!

i KNOW this will get SO MUCH easier..but right now its REALLY hard and REALLLY hard on me the most right now..this is why im struggling to find a balance and help from a caregiver..because jon requires SO much ALLLL day and ALLL thru the night...it really is a LOT of work