we did get a shave in.
and a hairwash courtesy of the cho and rocko salon. we saran wrapped his port air tight and then put the trash bag over his head and i taped all around his neck in a neurotic way. we had rugs and towels all over the floor for padding and then dumped nice pitchers of warm water over the tired man. cho gave him the gentle head massage knowing how much pressure not to put on a person's spine from her own experience. things i would never have thought of. we were both eager to get our fingers in that hair and scrub. it had literally been weeks since he'd had a hairwash--he'd only done it once in a while with the port. then i poured generous amounts of warm water over his scalp until cho had to tell me that's enough. i have itchiphobia. then i did the spongey cuz that's the wife's job. his feet turned blue so i had to speed it up, dry him off and get him dressed so his dad could walk him. not even i can walk him at this point. 
it is impossible to paint an accurate picture of how non-stop it is here. it feels like we are soldiers who have to keep going, but don't want to. it is not war, but it is a battle. some days i lose it emotionally and mentally... more often than not, but then God picks me up again and again. "i can do all things through Christ who strengthens me," is a Bible verse in the book of Philippians by Paul-- a man who suffered a lot on every level so it's not just anyone declaring this. a man on an airplane on my trip to new mexico in 2005 (before i lived here) gave the verse to me and said he felt it would be very important in my life. i knew the verse, but now i am knowing it. i'm not getting through this because i am strong. i am so pathetic and feel so sorry for myself and am so weepy and whiney and CRABBY and sulky most days, and quite frankly anyone would be! dang. it's just too much. it's only through Jesus that we are making it... barely it seems, but with blessed assurance of his strength to fall apart upon."When my heart was embittered, and I was pierced within, then I was senseless and ignorant. I was like a beast before you. Nevertheless I am continually with you; you have taken hold of my right hand. With your counsel you will guide me and afterward receive me to glory. Whom have I in heaven but you, and besides you I desire nothing on earth. My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73: 21-26
waiting is hard.
obviously it's extremely depressing for him. he gets so severly dissapointed when he can't get up and it affects all of us for the rest of the day. we've tried ALL kinds of pain meds and he can't tolerate too many although some narcotics help his mood for the day then make him feel crappy the next day. we do everything and more for him in bed and we are all physically and emotionally exhausted. i go in and out of breakdowns and exhaustion and helplessness not knowing when things will improve. however, today i am feeling the prayers and encouragement and peace in the middle of it. each hour is challenge for everyone here. johnny works 2 full time jobs and helps N ALL day long and he and hils even have to help me with the evening shift and johnny then gets up early to check on N so i can get some morning sleep. i am not strong, contrary to popular belief. it is the strength of God in me, but how can i "explain" that? i guess if you saw what a hideous and feeble wreck i can be then you'd know in my better moments something miraculous is keeping me going. my boss has been soooo kind letting me come in an hour later and it is making a huge difference in my mental state. she could see i was falling apart. work is a reprieve except that putting N to bed late (after dinner, toothbrushing, changing clothes, peeing, making the bed with him in it, water, meds etc.) and getting up early and to work on time was making me insane. we are working on making things more accessible to N in his bed so we aren't literally running in and out every 5-10 minutes. it is going a little better with johnny's systems. here's N the last time he could walk around. it is increasingly harder to get onto his feet so while the back is (hopefully) resting, his body is weakening. he hasn't tried to get up for several days. his mom has been brokenhearted and her body is so hurting and in need of rest and help that she can't get. she is our sunshine. what can i do?!
here is my little weirdo and i a few weeks back before all this happened. he really keeps me happy... most days. i sing him a lullabuy before he gets in his crate each night and that is a daily highlight because he puts his ears all the way back and stares at me with his big brown eyes and excellent eyeliner. i call him lamar cause he's got soul. he is such a sweetheart and a sneaky pistola and is a good distraction... most of the time!
frog dog is very bossy. he follows me around every morning and begs to go to doggie daycare down the road with auntie judy and her pack. he runs into the garage any chance he gets and stands by my car door and stares like, "what the heck is wrong with you, mom? let's get out of here NOW." 
my best friend, dawn, visited a few months back and it was one of the highlights of my year. it was a one day visit as her husband was picking her up on the way back from a road trip. she flew into ABQ in the am (he works for southwest) and spent the day with us. she was soooo sensitive and kind to our situation and it only made it harder to not have a close friend nearby. 