Bob's been home a whole month now. He was discharged from Acute Rehab on New Years Eve. We've finally settled into a routine, but, by God, it hasn't been easy. There have been times when I've been ready to throw in the towel, believe me. Bob is still not able to walk. Has difficulty speaking. He's on a feeding tube and can't have anything by mouth because his swallow is too weak. No movement in his right arm, at all, but his his right leg is coming back slowly.
Our daily routine: Up at 6:30 (me), walk the dog. Back home, disconnect the 12-hour nightly feeding. Quick bath (me). 8:00 a.m. first medications for Bob (all his pills have to be crushed and dissolved in water before syringing them into his peg tube). 10-10:30, first of three "bolus" feedings, 11:00--bed bath, get Bob dressed for the day. 12:00 second dose medications. 2:00 p.m. second bolus feeding, 4:00 p.m. third medications, 6:00 p.m. third bolus feeding, 8:00 p.m. last medication dose and connect overnight 12-hour feeding. In between all of this, visits from therapists (he has three, Speech, Occupational and Physical) and if no therapists are due that day, I do the therapy with him. Meanwhile, get him up in the wheelchair, change sheets, do laundry, empty urinal, change diapers, put TENS unit on for his electrical stimulation on his right arm, work on reading and writing (we are up to One Fish, Two Fish, Red Fish, Blue Fish and he is learning again to sign his name and print some words) or on slow days, playing Scrabble. At night, we watch a movie together on DVD's from the library. Then to bed around 9:30 and if I'm lucky, I won't be up three or four times with him.
Last night was a good one. I got to sleep until 5:00 a.m. A first!!
Today, the Physical Therapist is going to show me how to help him up to a standing position with the walker. He's been able to stand for 3 to 4 minutes. I've been to scared to attempt this on my own, afraid that he will fall and no one will be around to help me get him back up.
This is my first post here. I'm going to try to post regularly for those of you who would like to hear an update on Bob's progress. Time now for me to go and do his first feeding. Bye!