steps back: about a month ago hils and maria were getting n up and his sternum "popped". we don't know if cracked or what (as it has done before), but he had to stay in bed for 3 weeks without getting up once. it was reeeaaaally depressing. then when he could finally get up he couldn't walk because his muscles were so weak that his tendons were tearing again (as they have done before... ever since mexico if you recall those days). however, his back is slowly healing so we could at least get him in the wheelchair to get in the bathroom for a spongey.
step forward: now he is actually using his walker while we wheel the O2 (photos in next post).
another step: despite the sternum and foot set backs, we may attribute some progress to the fact that n has been graciously given the gift of getting umbilical stem cell treatments. thanks to some very kind and amazingly generous donations, n has had 2 treatments. results are hard to tell with his issues being so layered, but possible benefits may be: 1. better white & red cell and platelet counts this month 2. gaining a couple of pounds. maria and i were giving him a high speed sponge bath this week before i dashed off to work and she pointed to his shoulder blades and said, "mas carne!/more meat!" she is so cute and she and n have such a special bond.
reality check: it's hard to get hopes up with what we've been through, but all i know is that i'm extremely thankful that we get to try these treatments. n has been wanting to do so for a long time. thank you, Lord, for the sweet people who have provided this chance. we'll keep you all posted. 
another eventful semi-disaster: pungent smell eminating from our bathroom for months. at first i tried to ignore it-- my usual first strategy for dealing with problems, but it didn't go away. then we had the "mold guy" come out and charge us a buttload of $$$ to tell us we had stachybotris (nefarious black mold) incubating in our dry wall in between the garage and bathroom (we had a couple of leaks in the summer). we are still getting it remediated (having a built-in cupboard and a good portion of the bathroom and garage walls etc. ripped apart so you could see clear through our bedroom to the garage and then cleaned up and repaired for another buttload of $$$). yikes.
meanwhile, it has been musical rooms around here with sleeping arrangements, but n is camping out in his mom's room, and while all the mess was going on i slept on the couch with paco for a little over a week (see above) while flora graciously woke me up after snoring all night with mom and dad who gets up at 3 am to work in his office/bedroom where hils remained sleeping, but now hils and i are back in my room where i actually sleep in my closet with my hito and hils is in our bed which is pretty much n's bed but really also mine (but used to be hil's) and n is still in his mom's room and waiting to move back anyday now until the last of the repairs are cleaned up which are being done by our neighbor dave who is a builder/architect/occasional movie extra who is in and out every morning patching up the dry wall while hils and i are still spaced out and looking embarrassed in our pjs and i forgot to mention that our other neighbor perry is the mold remediator (not the "mold guy"-- that's dan) and he also comes by to check in and he said that he has more work in NM because of all the crapola construction and plumbling which causes muchos problemas in this otherwise arid state. no big surprise given the work ethic here. they actually debated (and spent tax $ i'm sure) to change the state motto to "carpe manana" if that tells you anything. it's been sort of tiring as you can imagine. i can't WAIT until tubbery is back in our room because i really appreciate the space we share and hearing his sweet voice chime in with friendly and funny comments while we're all in the kitchen which is next to our bedroom.
did you get all that, kids?
another really crappy thing that happened is... nevermind!
just take note that if you dress like above don't expect to have a groovy time on a horseback ride for your birthday. i can't really mention details, but me and the person who had this really bad idea are really sorry and are so thankful to God for taking care of it and ensuring that no one was injured. 
ya es todo por ahora, amigos.
here's my lad putting up his feet and doing his daily heparin dose. what a trooper, wouldn't you say? thank you, Lord, for your mercy.
she and her amazing husband marty and my wonderful aunt (well... my mom's cousin, but i call her an auntie) jennifer came to our house one day and we met in town for dinner the next day. they doted on N, or natty, as bamma calls him:):):) and brought calabasitas and peas from our relatives gardens in mora...
fee bird was also here at the time since her dad had to return to california to do much needed work. she was AWESOME and adorable and made great progress with N. see... no oxygen and she got him outside and he was only holding one hand. we were so excited. she would make N laugh a lot and he would have to say: "i'm not listening, i'm not listening" so as to prevent any cracking up. she's the best! 
fee was very disheartened to hear that the saturday she left, N had a huge setback while her dad was taking her to the airport. after his sponge bath, he literally clung onto me for 20 minutes in a severe spasm that left him panting over my shoulder and completely locked up. thankfully maria showed up and she, hils and i got him painfully back into bed. he stayed there until tuesday afternoon. 
his dad continues to be the only one who can get him up. sometimes it works, sometimes he has a spasm and has to go back down. there is little progress so i'm pretty freaked out. his max time for being up is anywhere from 5-30 minutes. we can bust out a sponge bath pretty quickly now. it helps that i am on a 5 week leave of absence from work now... i never mentioned that i switched jobs again to a 12 month position as a literacy coordinator at the community college. it's one position with a pay raise, and not 2 jobs--although i've been doing about 5 people's jobs all winter and spring since we've had a lot of turnover. it's been wacky, but i'm thankful for the employment and nice people to work with. it has been one of the most difficult times of our lives and i'm just trying not to be anxious about going back to work and balancing it all. it has pushed me to my limit. it feels like we're living in a hospital and being on call all the time. sometimes i can't even eat dinner or i eat breakfast at 2 pm, like today. i feel so badly for everyone... especially N because it makes it hard to spend any quality time together since every interaction now is a call for help. we are all worn THIN!!!
paco is the only one who still wakes up feeling groovy everyday and cheers us up with his puppy love and carefree ways. here is N in late may when he took a rare walk to the steps outside. it's very hard to believe we are at this point and i can only hope it will get better. N does have severe osteoperosis so i'm not sure if this is symptomatic of that--that's what i'm afraid of. we still can't get him in a vehicle to get the MRI and if it is a compression fracture as the doctor and PT suspect all he can do is what he's doing anyhow. i don't know how this happened or what it means.
watching the sunset over lamy together.
thank you, God, for my wonderful husband who loves me so much in the midst of such pain and for my hito pacito and for so much grace for each hard day. 
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.
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. 
