A Day In The Life Of Kamora

A Day of Life for Kamora

Morning Routine  Total time 3-4 hours

Up at: 4:00-5:00am

Care and Positioning:

•       skilled therapies working with her sensory issues, vision stimulation, about 30 minutes of range of motion
• ·         observation of pressure points
• ·         feeding by mouth for pleasure and sense
• ·         repositioning every 1-2 hours to prevent skin breakdown
• ·         transfers in and out of wheelchair, bed, side layer, stander, floor
• ·         undressing and redressing for the day
• ·         apply leg splints and hand splints
• ·         do hair
• ·         assist with ambulation

Feeding:

·         morning feed runs about 45 minutes thru g-tube in stomach

Medications:

·         Given with morning feed

Cleaning:

·         Change diaper, perineal care

·         Wash face, hands, brush teeth

Mid-Day Routine appx 1.5-2 hrs

Feeding:

• ·         Feed runs about 45 minutes

Care and Positioning:

• ·         Remove and Reapply leg braces and hand splints to check for skin break down
• ·         Change diaper, perineal care
• ·         Wash face
• ·         Repositioning as needed every 1-2 hrs
• ·         Range of motion activities
• ·         Transfers from bed, wheelchair, floor
• ·         Assist with ambulation

Night Routine appx 4-5 hrs

Night routine typically starts between 4:00 and 5:00 p.m depending on the night

Care and Positioning:

• ·         skilled therapies working with her sensory issues, vision stimulation, about 30 minutes of range of motion
• ·         observation of pressure points
• ·         feeding by mouth for pleasure and sense
• ·         repositioning every 1-2 hours to prevent skin breakdown
• ·         transfers in and out of wheelchair, bed, side layer, stander, floor
• ·         undressing and redressing for the day
• ·         remove leg splints and hand splints 
• ·         do hair
• ·         assist with ambulation

Feeding:

·         Night time feed runs about 2.5 hrs thru g-tube in stomach

Medications:

·         Given with evening feed

Cleaning:

• ·         Change diaper, perineal care
• ·         Bathing, shaving 2x per week, and hair typically take 1.5 hours a day from start to finish.

Transporting:

·         I had an accessible van but it constantly broke down so I had to buy a new car and had to get a $2500 car seat that would accommodate Kamora’s needs. But I really miss the convenience of the accessible van.  It was so much easier.

Does she require care or assistance through the night?

·         Rarely does she require assistance through the night unless she is really sick or after surgery and has more needs to be met or if I hear her have seizures

Equipment to care for her:

• ·         Kamora has a wheelchair and a stroller that she can be transported in
• ·         Hospital bed
• ·         Side layer for positioning
• ·         Bath chair
• ·         Therapy balls
• ·         Stander
• ·         A lift
• ·         An electric feeding pump

Therapies received in home/frequency:

• ·         Physical Therapy – 3x weekly
• ·         Occupational Therapy- 1x weekly
• ·         Music Therapy- 1x weekly
• ·         Massage Therapy- 1x weekly
• ·         Speech therapy was discontinued because there wasn’t improvement

Therapy accommodations:

• ·         Multiple therapy balls varying in size and type
• ·         IPad for vision and audio stimulation
• ·         Vibrating pillows for comfort and support during positioning
• ·         Bone pillows for positions
• ·         Wedges

If Kamora has a full day of school then you can subtract the mid-day routine.  Otherwise this is our routine 7 days a week.