Well, if heroin addicts can do it ....

Wheeler has been struck down by the dreaded pseudomonas bacteria in his bladder.  Its a particularly nasty bug that it exceptionally hard to kill, in fact, most of the time it can only be (marginally) controlled, not actually eradicated.  So yesterday, we went in to the urologist dreading it because we knew that the only treatment was with antibiotics given by IV, which meant a stay in the hospital for a few days or a PICC line and home treatment.  Problem is, we don't have home health care benefits so it would have meant a hospital stay, which is reallllllllly a pain for oh so many reasons.  Not least of its an excellent place to get sicker, not better, particularly when dealing with a UTI in a spinal cord injured person.  

However, it turns out that the doc recommended gentamyacin, which can be given by IV or by IM injection, a huge dose given every day for 7 days.  So, he got an injection there in the office and we were supposed to come back every day to have another injection every day.  The weekend was a problem though, since they are closed, so I asked if I could do it.  Sure!  Then I realized, well, if I'm gonna do it over the weekend, I might as well do it all and save us the 2 hours a day it would take minimum to get there and back ... and the $60 COPAY for a specialist visit every day.  Gulp.  More on that in a minuute.  So, the girl (I'm a pig, I know, I know, but she was a girl) showed me how to do it, the doc gave us the prescription, called our pharmacist who ordered the meds in so they would be here today.  They loaded us up with syringes and needles, and I got the meds today. 

I stared down the bottle, the needle, the syringe and went for it.  Swabbed top of the vial with alcohol, pushed 2 ml of air into container, just as the pharmacist told me to do to avoid a vacuum when sucking the drug out.  Drew up the 2 mL of drug.  Failed.  I only got about 1.25 mL.  And given it vitally impt to get all of this medicine down the muscle hatch, I was a bit distressed.  Luckily, I had them write him for an extra day's worth of drug for just this reason, so I got another needle and tried again.  Success this time.  Swabbed his leg with alcohol, jabbed him, Then I went for the second dose (third vial) because he has to take 4 ml (80 mg of gent) and failed again, same thing, could only pull up about 1.25 mL even though I did it the same way.  Hmmm.  Not wanting to waste another vial, I gave him the 1.25 mL injection, then put a new needle on the syringe, alcohol swabbed the top off again, then plunged it in and pulled up the remaining gent.  Jabbed him again (the one small advantage is that he doesn't feel any of this thank god .... then again, not being able to feel, this whole paralysis thing, is how he got the UTI to start with... hmmm, I guess its a draw).  As I'm jabbing him he says "You're not pushing air in there are you?!".  So now with visions of air emboli hurtling through his body and choking off his brain in less than 30 seconds, I push the remaining gent in and wait for him to die.  Thankfully, he didn't die (yet). 

I had no idea it was so intimidating to give an injection.  Only 6 more days of this, by which time I'll be an expert.  Wheeler said that I've watched enough Intervention on A & E that I oughta know how to do this by now.  True that.  If heroin addicts can do it, so can I.  I bet they worry less though.

And if anyone wants an injection, let me know.  Just bring your own drug of choice, the gent is ours.

One of my biggest fears

I have a huge fear of choking when it comes to Wheeler.  

With anyone choking is very scary, but with Wheeler its extremely scary because he has a very poor swallow/gag reflex due to his injury - which makes him more likely to choke in the first place but also almost totally unable to cough anything up.  Then, put him in a wheelchair, strapped down in 5 places (2 feet straps, a seatbelt, 2 arms bands, a chest strap and chin control) - it would be really hard to get him out of the chair fast enough and be able to somehow administer the heimlich maneveur since his legs are limp noodles.  So I've always had a fear of him choking and I'm hypervigilant about it.  Well, it happened on Monday, he choked.  After 6.5 years together, its kinda amazing it took this long for it to happen.  

He was in bed, I was feeding him ramen noodles (don't blame me, I just make what he asks for, there's no accounting for taste).  He took a drink of water and it all got bungled up in his throat somehow.  I saw the look in his eyes that said "trouble".  I asked if he was choking - in the past when I've asked, its always been a false alarm and he would just say no, albeit sputtering most of the time. But this time, he didn't answer when I asked him, his eyes were just wide open staring hard at me.  For a split second I wondered if he really was since he didn't say he was choking, then in the next split second I realized he can't talk because HE IS CHOKING.

I am a good person to be around in an emergency.  I focus immediately, I stay calm cool collected and I just move into a zone, I just act and don't feel any emotion at all.  And thats what kicked in at that moment.  I made a plan and executed it.  First I just pulled him forward and thumped him open-handed on the upper back a few times.  Nothing.  I hit him much harder, with a closed fist, very hard, down in the middle of his back.  Nothing.  I leaned back around to see how I could best jump behind him, hoist him up to try to do a real Heimlich and I caught his eyes again.  There was panic in his eyes, and for a moment, I felt the same panic kicking in.  But I fought it, and I decided I would give him one last thump before I tried to somehow get behind him.  The thought crossed my mind of calling 911 but one can only be oxygen deprived for 4 minutes before brain damage begins, so I would have wasted precious seconds calling and there is no way anyone could have gotten here in less than 4 minutes, especially since we were already 1 minute in by this time. 

I leaned him over again, as much as possible at the waist to keep the airway straight, I wound up my left arm, balled up my fist and I hit him with all my might, a punch worth of Muhammed Ali, pushing as much presure from bottom to top as I hit as I could.  In response, I heard the most beautiful sound I've ever heard - a  gasp of air in.  He coughed weakly and swallowed over and over again, while still struggling to breathe.  I wasn't entirely sure he could fully breathe so I asked if I needed to hit him again and he shook his head no (of course, he may have decided death was preferrable to another punch like that).  After a few minutes he was breathing normally again.  And that's when I panic - after the fact.  I just starting to tremble and shake head to foot because I realized that he could have so easily have died right then and there.  It was very frightening and just underscores what a bitch spinal cord injury is all around.  Its not that you just can't feel or move, there is SO much more.  At Wheeler's level, you can't pee or poop anymore - you need a tube to pee and you just don't even want to know about the back door.  Your lung function is compromised, your immune system is compromised, you are subject to bone breaks because you can't feel your limbs if they get pinched or stretched in the wrong direction, prone to pressure sores because you sit in one place for so long, you get urinary tract infections (see previous about tubes to pee, they carry bugs quite effectively), you get fungal infections, which are opportunistic since there is little airflow due to lack of movement, and then there's the higher risk of everything from depression to heart disease.  SCI sucks.  Alot.  And so much more than it seems on the surface, and it sure seems shitty even on the surface.


Moral of the story?  Don't break your neck.  And learn the Heimlech maneuver.   

The literacy notebook

While Offspring has many, many wonderful characteristics, he often lacks in the "follow up" department. Especially when it comes to things like remembering to bring his homework home. His homework in 3rd grade consists of two parts each night - a sheet with math problems and a literary assignment. The literacy assignment is supposed to be written into their literacy notebook, a notebook they are to carry back and forth to school each day. Offspring has less than a stellar record on remembering his literacy notebook. We've replaced it twice now since only July. I was completely fed up yesterday when he turned up after school empty handed AGAIN. So this morning, I told him that if he didn't bring it home today that a) he would be in BIG trouble and that b) I would turn him right around and he'd have to walk back to school to retrieve it. 

About 10 minutes after school let out, I was looking out the window expecting to see him skipping down the sidewalk. Instead, my phone rang. It the school's phone number. That means one of two things. He's sick/hurt, or he has behaved very badly. Being the mother of a small mischevious boy, I have received more than one of the latter calls. Instead I heard his teacher's voice: "Hello, Offspring's mom? I'm calling to tell you that your son won't leave school." 

I will admit, that's a new one. 

She explained that he was unsuccessful in his attempts to find his literacy notebook - and that she even had the whole class looking for it in all of the desks, etc. He said "My mom's gonna kill me if I don't bring it home today". She assured him that it would be ok to go home, that I wouldn't actually kill him, but he was adamant that he stay at school because I would make him go back. Stifling my laughter, I told her that she could confirm to him that I would not actually kill him. Yes, he would be in trouble, but no, I would not turn him around to go back. After I hung up, I continued to laugh - but you can't argue with the boy's logic:

Mom says she will turn me around to get it if I come home without it.

I can't find it. 

So ..... I'll just stay at school. 

Plus ... she's probably gonna kill me. 

It's a little evil, but I love that I can instill the fear of god in that child. I have a feeling it will come in handy when he's a teenager.

The most embarrassing thing and a VERY itchy head

Offspring is at that age where he is obsessed with what makes people embarrassed, and all of the what-ifs scenarios. What if you barfed in front of the President? What if you peed your pants because you laughed so hard? What if you tripped and fell right on your face in front of everyone at your work? And so on. He's clearly in that stage, the one where he's starting to be self conscious. So yesterday when he asked the same question he'd asked 1000 times already, I was pretty sure I knew how the conversation would go.

Mom? What would be THE most embarrassing thing EVER to happen to you?
Ummmm, I dunno.

Well, *I* know what would be the most embarrassing thing ever for you.
Ummm. Ok. What would that be?
If you were a college professor, and you were up in front of hundreds - no a thousand! - students, and they were all looking at you, just staring at you, and it was just you up there .....
(inwardly groaning here, knowing what he was going to say)

.... and you opened your mouth to talk and you used poor grammar!!! Mom, you would totally die of embarrassment!
Ahhhh, my son does know me well. Poor grammar (as opposed to bad grammar) is a huge pet peeve of mine. I am constantly correcting him on verbal and written uses of words, especially adverbs versus adjectives. One doesn't run slow, but slowly (this reminds me of the entry about Offspring's grammar gun). I do find it interesting though that he said something about being a college professor - my mind must be projecting my desires to switch back to academics.

On another note entirely, Wheeler has a completely bald head now. On Sunday, after we got back from dinner, he asked me to look at his head and scratch it, because it was making him absolutely bonkers, itchy - super itchy all the time. I put him directly from his chair into the shower chair, which makes it much easier to have a panoramic view of his entire head. I could see lots of fiery red bumps and I was shocked at how many there were. As we've learned from the past, where there's smoke there's fire, so I suggested that we shave his head completely so that I could get a truly clear view and then treat it with my variety of potions and lotions. He agreed, so I shaved him completely.


Oh. My. God.

I was so incredibly horrified. His ENTIRE head was a fiery mass of angry red bumps, scattered absolutely everywhere, all over his head. The bumps I could see were maybe 10% of the ones that were there. I cringed inwardly thinking how much this much this must have been hurting him, and that he'd been suffering in silence. I still just can't imagine how horrible it must have been for him. I couldn't even bring myself to take a picture of his head to show him, which I normally do for all manner of things - pressure sores, infections, whatever, since he is physically unable to see most of his body (ask QuadCat, I photographed his pressure sore every day to track its progress). I - mistress of never being bothered by anything - couldn't even take a photo to show him, it was that bad.

First, I scratched the everlovinshit out of his head - after which I nearly had to hand him a cigarette because he kept saying ahhhhhhhh ahhhhhh ohhhhhhh ooooooooohhhh with a scandalous look of bliss on his face. Then I used Nizoral (ketoconazole based) shampoo on his head. I scrubbed it in really well, massaging it into his scalp, over and over and over again. I left him out of the shower, washed him up without the water running so that the shampoo could work its magic for longer. After I let it sit for about 10 mins, I washed it off, finished up his shower, and dried him.

At that point I was torn on what to put on next. Hydrocortisone would quiet down the incredible itching and inflammation, but this rash (based on experience) was almost certainly a fungal infection on his scalp. Hydrocortisone is a steroid, and fungal infections feed on steroids. If you aren't careful, putting a powerful steroid on a fungal infection can light it absolutely on fire. But, if I put on just an anti-fungal without a steroid, it would take at least a day for the itching to decline - and after seeing the angry rash, I couldn't deal with the thought of him being that itchy any longer. I gambled and put on a hearty layer of Rx strength hydrocortisone and then for good measure, smeared lidocaine all over the scalp.


Lidocaine deadens sensation - just like novacaine for dental work. In topical form, its used for cathing and all sorts of other applications, so we always have lots of it on hand. It has handy for intense itching because it just physically blocks the sensation. Unfortunately the effect is short lived and you can't put on more than about a quarter size dollop over the skin in any 4-5 hour period because high doses of absorbed lidocaine can cause seizures and even death. But, I could at least deaden the itching for 20-30 minutes after the shower and by then the hydrocortisone should start to quell the inflammation.

After putting on the hydrocortisone and lidocaine on, I put him in bed, babied him to death because I felt soooo badly for him, and then gave him oral fluconazole to try to fight the fungal infection from the inside out to balance against the topical hydrocortisone. A few years ago we battled fungal infections from hell on his head, his crotch, in the webbing of his toes and fingers, his armpits, anywhere it was dark and most - and the strains he had became resistant to absolutely everything Rx. It has been quite a long time since he had a serious infection though, so I hoped the fluconazole would be effective.

Well, whichever worked, I don't care because it worked. By Monday morning, his head was significantly better. I could see where the rash had been, but all of the pustules were gone, and the skin was basically just mottled from where the rash had been, but wasn't now. Since then I've been watching it like a hawk, and I've transitioned off of using hydrocortisone during the first 12 hours to using topical antifungals. So far, so good. And no matter how long I live next to a spinal cord injury, I will never, ever have a clue what it means to have one. Poor Wheeler. My ant bites seem rather inconsequential now ... perspective is important.

Clanging doors

Today I visited the Federal Medical Center (FMC) with our dog Dog. The FMC is hospital into which ill, mainly desperately ill, federal prisoners from all over the country are sent. FMCs take in all level of prisoners from low level non-violent offenders to supermax level felons. As a result, the security at the FMC is the maximum possible.

There are only 6 FMCs in the country, one being in Butner, NC which close to where we live. When locals here think of the prison in Butner, they think of the minimum security prison where among others, ‘white collar’ criminals such as Bernie Madoff are sequestered from humanity for 150+ years. The staff at the FMC call these local low security prison inmates campers, which for some reasons struck me as sort of funny in a sort of not-funny way. Perhaps like day camp, only free. And less fun. And you don’t get to go home on Friday. But this isn’t where I went; I was at the FMC, a nearby but totally separate place.

I am affiliated with a local professional therapy dog program run by a person who is truly kind soul with a pragmatic approach to life. In addition to the typical therapy dog program stuff, like visiting sick kids in the hospital and visiting nursing homes, he has been trying diligently to develop a ‘cell dog’ program whereby inmates raise and train shelter dogs to become more adoptable, and perhaps to even become service dogs. Search the internet for examples of these programs. They are truly in all ways a win-win proposition. However, the paperwork to develop this – and gaining the trust of the warden on down – is a long process. In the meantime, I have repeatedly expressed a high level of interest in taking Dog to do pet therapy at a prison. It must be the do-gooder in me, but I truly believe that there is no one so terrible that they shouldn’t get the pleasure of petting a dog. I’m sure that some would disagree with me, but of those I would ask them to follow me metaphorically through my journey today.

To get in, I could only bring a single car key and a form of photo ID, all else had to be left in the car. I filled out a number of forms and log books while Dog sat patiently and happily, being petted by the social worker who coordinated my visit. I went through a metal detector, noting that the X-ray screener type device was used even for a single sheet of paper to pass through into the prison. After I cleared the initial security, we visited a number of the administrative staff on the 1st floor. Perhaps this was to let me get used to the idea of being in a maximum security prison facility. Or perhaps they just really did want to meet Dog. Either way, everyone was smitten with Dog.

There were several more layers of security to get in, and yes, the doors clang. Loudly. We went to the hospital floors after we got through all of the clanging doors. Right off the bat, there were a number of inmates in the hallways, mostly in wheelchairs. We visited the men in the hallways and went individually to the rooms of patients too ill to be upright in a chair. Dog is what we call a ‘nudger’ – he will push his head up against you to signal his overwhelming desire to be petted. He nudged nearly everyone, and won over even those who initially expressed no interest in petting him. In one room, Dog – bless his heart – carefully jumped up, unprompted, and put his paws ever so gently on the edge of the bed of one inmate so that he could at least see him and perhaps reach over him to pet him. I do not know how, but honestly, Dog just knows who needs him. He really, truly does. I wouldn’t believe it if I didn’t see it over and over again with my very own eyes. He laid his head down on this man’s bed so that he could reach him, and the inmate reached over with obvious effort to try to touch Dog and could just barely reach the top of his head. I have no doubt that Dog sensed a deep need within this man, and Dog didn’t know what he had done before coming to be in that bed. He just wanted to give him a small piece of happiness, a tiny ray of sun, in an otherwise sad existence made all the worse for being near death alone in prison. I fervently hope that no matter what he did in the past that one of his last memories is of a beautiful gentle dog with his head on his lap.

Some inmates appeared to be very healthy, which confused me until I learned that they were low security inmates who became helpers to those most ill. From what I understood, these inmate helpers essentially perform nursing care and live on the floor with the patients for whom they care. These inmates particularly touched my heart because although there must be benefits to being on the hospital floors, perhaps a bigger room or more freedom to roam about – I don’t know – it was clear that regardless, they really cared for ‘their’ patients. One inmate helper propped up ‘his’ very ill inmate who was on a ventilator, holding him very gently, placing his hand gently on Dog so as to pat him on the head. The inmate, who is very near death, smiled every so slightly which caused me to fight off tears.

One of these helper inmates was so lonely and needy that it practically radiated out of every pore. He volunteered to keep Dog in his room if we needed to eat lunch or take a break, which is of course against the rules. If there were any possible way I could leave Dog there with him for an hour, a day, a few days, I would do it in a heartbeat. His hunger for the affection of dog was palpable and make my heart ache in concert with his loneliness.

Throughout my visit I was struck by the level of respect given to the inmates by the staff. All men were called by their last names preceded by “Mr.”. Based on what I saw – albeit a short time period – I believe that the people at the FMC see themselves as in the business of healing and rehabilitation, not necessarily in the business of punishment. All told, I spent about an hour on the floors all total and about an hour talking about logistics, meeting the administrative staff and clearing security.

It was an emotional visit. It was immensely satisfying to see my dog help so many people, even those that some deem unworthy. I am so proud that I trained him so well, that he is well behaved enough to do these things. But the credit isn't due only to me, we are so lucky that we found a dog with an innately gentle spirit who sees and loves the good in all of us, he somehow sees the part that makes us human. Dog recognizes need by instinct and responds to that need the best way that he knows how, by looking up with those giant brown eyes and by burying that soft poofy white head into a lap.

The day’s visit was also tremendously sad. Whatever these men had done, they were dying or were ill, more or less alone, in prison. Many of them will die there. At least a few will have died by the time I return next*. Some may have absolutely no one who cares if they live or die, and in fact, some may have those who fervently await their death as reparation for the bad things they did during life. This set of conflicting emotions were intense as I drove home and are spilling over as I type this.

No matter what anyone would say, no matter what it would seem, life is not black and white. There isn’t a bad person and a good person. Life is grayscale, a continium. Today Dog brought some white to the black and white scale that exists in these mens’ souls. For that, I am proud, sad, and happy. And because of that, I will be back every Monday. Count on it.

*update since I wrote this, about 1/2 of the inmates I saw the first time had died by the time I returned the next week. The social worker said to expect that, but it still was a shock.

Please fax to:

Today in the mail I received a form to fill out. Its 14 pages, so its a helluva a form. At any rate, the letter with it says, approximately:


Dear Person With Nothing Better To Do, 

Attached is a form. It is really long. It is repetitive and much of it does not even apply to your situation. Despite this, you must fill it out. Yes, all of it, yes it is 14 pages long (excluding instructions, warnings, precuations and legal liability waiver disclaimers on pages (i) - (iv). 

Once it is completed, please fax this form to 1-666-FAX-HERE. It is extremely important that you fax this to the correct number, so again, please ensure that you fax this form to 1-666-FAX-DIFFERENT#. If this form is sent to the wrong fax number, your claim will not be processed and there will be a substantial delay on the processing of your claim. 

With Our Best Regards, 

The Company Who Hopes You'll Give Up and Just Not Send It In 

Then the best part - on the form itself is yet a third different fax number that is listed as the fax number to use. And I'm still wondering if the claim will not be processed or if it will be but there will be a delay in processing it. So what do I do? Fax to all 3 numbers and then they'll say that I have multiple claims and delete them all? Flip a 3 sided coin and send to the winning phone number?

I wish I was kidding.

Mom Mom Mom Mom Mom Mom!!!!!!!!

I have been sitting out on the back porch for several hours. Offspring and Best Friend were out in the field playing some sort of ball game. I went in to get something from the bedroom when I heard approaching the house, then in the house:

MOM!MOM!MOM!MOM!MOM!MOM!MOM!MOM!!!!!!!

Alarmed, I ran out to find out what was the matter and I saw his face - plastered with the biggest grin and full of excitement, his eyes wide open:


MOM!!! IT'S THE ICE CREAM TRUCK MOM! THE ICE CREAM TRUCK!!!!!!!! QUICK!!! WE NEED SOME MONEY!!!!!!!!!!!!!!!!!!!!!!!!

I never have cash on me (because I tend to spend it if I have it), so I rummaged about until I found Offspring's piggy bank, which is actually a jar that is painted with a pumpkin for Halloween, and dug out $3 worth of quarters. He kept saying hurry, hurry, hurry, hurry mom!!!jumping from foot to foot. I assured him that between a) Best Friend standing out there holding the truck and b) the man seeing me - a mother being held hostage to the sounds of the ice cream truck - on the steps digging out m0ney, that the truck would not leave, that the ice cream truck man is a savvy salesperson and would never leave such a sweet situation.

After I handed him the quarters, he sprinted as if his life depended on it back out to the field where Best Friend was looking back like "HURRY UP DUDE!" and they both got popsicles. They were tres pleased with themselves and ate them with a substantial amount of glee. 

Offspring has never actually bought ice cream from an ice cream truckbecause they freak me out, but I decided (apparently in the heat of the moment) that it would be ok to purchase a sealed confectionary item while they were both in plain sight. And now I'll let him in the future because he was SO excited, in the way that only an 8 year old can be excited. I told him to go throw away the stick when he washed his hands, but he said "no, mom - I'm going to keep this stick forever. It is my first ice-cream-truck-ice-cream EVER!" with the hugest most happy look on his face. 

I love my kid. He makes my world happy. 

But now I owe him $3.

Things never work out the way you want with a PCA

I could just KILL Wheeler! The story ....

M (our new PCA) came over yesterday and was here for 3.5 hours, and I spent all of that time showing him how to do range of motion, how to shower him, how to do cathing/bag draining, and bowel care. Much to this kid's credit, he didn't flinch at all and I asked him very point blank if he was OK with the bowel stuff, he said absolutely. In fact, he wants to be a nurse - how perfect for all of us eh? He did a great job, was very enthusiastic and seemed to be a nice kid.

Today, Offspring and I went to a water park about 1.5 hours away and I left Wheeler here with M, the new PCA. What a concept - I could GO somewhere and STAY there and HAVE FUN with my kid!!!!!  So that was GREAT, just amazing. As I have always done for PCAs in the past, I left a list of things to do, which were: range of motion (30 mins), feed him breakfast (30 mins), walk the dogs (10 mins), straighten up the back patio (10 mins tops), do the dishes (15 mins), sweep the downstairs hardwood floors (15 mins) and keep the laundry moving - I had about 6 loads to do. So, when I came home at 5:30 - having left at 8:45 am, I noticed the back porch was clean ... yay! I'd told him this was the lowest priority, so I knew everything else got done, right? Walked in, lots of folded laundry (although less than I expected), great. I walked to the kitchen to see my sparkling clean sink with allllll the dishes done .... ummmmm, no.

Kitchen and sink exactly as I'd left them 8.75 hours before, floors not sweeped (not that I was counting the time .... eh hum... $10, $20, .... $80.75 ). Hmmmmmm. Maybe there was a problem?  I walk in the bedroom, they are both sitting there watching TV. Wheeler was in bed, which I expected, I hadn't shown M how to get Wheeler up and use the leg bag yet. But there was alot not done and I was pretty irked. But, I didn't let it show because I didn't know what was going on and it really was more or less his first day, so I waited until he left to ask Wheeler what the ehch-ee-double-hockey-sticks M did today since he could have done everything I'd asked in 2 hours tops, other than laundry, which is just 10 mins of folding every 45-60 mins as things dry/wash.

"Ohhhhh." Wheeler says. "I guess its because I sat and talked to him for a few hours, and then we got talking about horror movies and vampire flicks, so I told him to turn on True Blood" (on HBO on demand) "and we watched almost 3 episodes."

AS IN YOU PAID HIM TO WATCH TV FOR 3 HOURS?????????

"Oh. Ummmm, well, yeah, I guess I did".

OK, I would like to KILL Wheeler about now!!!! So, I told Wheeler that from here on out, I would show him the list I leave for M, and if and only if, 100% of the things on the list are complete can M dilly dally and chat for a little bit only - and that M needs to take initiative to find other things to do if he finishes everything I ask him to do.

BUT .... with all that being said, it did work out well in terms that I was able to leave and go have fun with my kid all day. It just irked me because I was soooo looking forward to a clean house when I got back. So I'll focus on those good parts and I'm sure it will improve from here. 


Edited to add two days later: Hse was supposed to come Saturday at 11 am to get Wheeler showered, up, etc. At 11:47 pm on Friday night he called me. I'm very sure he thought it would go to my voicemail, but I am a night owl and nearly always answer my phone even at 1 am. So, I picked up, he hemmed and hahhhed for a second then asked me what time he was supposed to come over tomorrow (Sat). I said 11 am. Then he said that he had been soooooo sick, all day long, and could he come later? He said he'd been at his mom's all day, he'd been throwing up, etc etc.

Bullshit.  He was drunk. He was slurring his words and was quite obviously soused.

So I said that if he was sick, do not come over because I don't want him to spread anything to us, that is a cardinal rule for PCAs - do NOT show up for work if you are sick. I hung up and was uber mad. I HATE BEING LIED TO. Even if he hadn't been obviously drunk when he called, calling at midnight to your employer to ask when you are to work the next day - which was his second day on the job???? How hard is that to remember? And he couldn't have called earlier in the day if he was truly sick? Yeah right. I was pissed.

To call his bluff, I called his mom the next day (I have her number, he lives there) and left a message to see "how M was feeling, as I know he was feeling sick all day and I'm worried about him". She didn't return the call. But then M called today and said unsolicited that actually, it was his sister who took care of him, that he was at her place, not his mom's, as he had said the day before. Hmmmmmmmmm. Me thinks Mommy asked M about his "illness" and Ma had to proactively tell me another story in case Mom calls me back. 

I am just disillusioned. I was really hoping this would work out, but I think it will be just like all the other times with crapola PCAs. And so I'll be back to square zero on help. 

Oh well.

21 years since Wheeler broke his neck

May 22, 1988
May 22, 1989
May 22, 1990
May 22, 1991
May 22, 1992
May 22, 1993
May 22, 1994
May 22, 1995
May 22, 1996
May 22, 1998
May 22, 1999
May 22, 2000
May 22, 2001
May 22, 2002
May 22, 2003
May 22, 2004
May 22, 2005
May 22, 2006
May 22, 2007

May 22, 2008

May 22, 2009

Mornings with me - talking not recommended

I hate to talk in the morning. I really do. I hate mornings in general, but speaking in the morning is incredibly annoying. Either direction: I hate being spoken to and I hate speaking. Wheeler, on the other hand, talks alot in the morning. Its good in a way because he gets Offspring up and moving, and Offspring is talkative in the morning, so they talk to each other. But the other day, Wheeler was hungry when he woke up. And here went our conversation, approximately....

What do we have for breakfast?

(silence)

Do we have anything to eat?

muhhhahhhhpft

Do we have any cereal?

rumphfff

Yes, we do?
mmmmm mmmmm

What kind?

reareeeerohs (said without opening my mouth)

Regular?

nuhhuh

Honey nut?

(silence ... hoping he'll think I died, call 911 and ask them to bring breakfast on the way to pick up my dead body)

Honey nut?

Fwwwwwwwwwuittteee msmmmmaaaqqqffffttt

Hmmmm. Do we have eggs?

Yeah (with a snarl)

Oatmeal?

YES!

Toast?

(silence)

Well, when you are done getting Offspring's breakfast could I get a bowl of cereal? 

(silence) .... thinking, geez, if you were gonna eat cereal all along, why the 3rd degree about all other possible breakfast options?

Hello?

YES!!!!!! I heard you, whatever. Geesh. 

OK. 

(glare)

What?

Do I look like a short order cook?! ..... (pause).... Wait. Don't answer that.

Air show

We went up to the Langley Air Show this past weekend and it was really fun. We stay at his dad's place when we go up, they live very close to Langley AFB, and we just love them to pieces, so its always a nice time. This year Pappy and Gma E didn't go with us because Pappy is still very tired from chemo. While he is officially in remission now, the last 7 months took alot out of him and he is still doing maintenance chemo every 2 months.

As we were driving up, we stopped to eat at Smithfield BBQ in Zebulon. I love Smithfield, although ever since one opened very close to our house, I am kinda tired of it. But, we hadn't gone there in a long time, plus, I can eat there if I can convince them to LEAVE THE HUSHPUPPIES OFF MY PLATE, so that's where we stopped for lunch. Dog, as always, caused a stir. A young guy working there came up and said "Is she part Bichon Frise?". Really. That's what he said. I swear. I tried really, really, really hard not to laugh (at least until he was out of sight). Offspring was being very charming, and Wheeler struck up a conversation with a really nice older couple since a table over. In the spirit of a its a small world after all, turns out she had worked at vocational rehabilitation for the state, which is where Wheeler received many benefits, such as his computer programming education. They didn't cross paths there directly, but the two of them have in a common a friend. They own a horse farm and it would be really nice to look them up and take the dogs out there to run.

As we were driving after lunch, I can't remember the context, but Offspring was explaining a situation in which he was exasperated. Except it came out as exhausterated. It was very funny. When the word is bigger than your tongue, it can be hard to spit it out. Which also reminds me of another funny thing he said the other day. He was brushing his teeth downstairs, and as such, he had to use my NON CHILD toothpaste, meaning, it does not taste like some godforsaken flavor like bubblegum. I warned him the toothpaste was not his godforsaken bubblegum flavor, but rather mint (which I love and he hates .... is he *really* my child??? I LOVE mint anything). He was cool with that, although he grimaced and groaned whilst brushing, much the same as I do when forced to brush with godforsaken bubblegum toothpaste. Afterwards, I handed him a little cup of mouthwash to rinse. He put it in his mouth, swished it around while his eyes got bigger and bigger and bigger. He spit it out eventually and said "was that some kind of sick joke?!?!?!". It finally occurred to me he meant that the mouthrinse was mint, not kid's godforsaken bubblegum Act. It struck my funny bone, and I couldn't stop giggling about it. Offspring was less amused however and stalked off with his hands on his hips glaring at me. It still makes me laugh to even write it out!

Back to the air show, we knew from last year that it would be a very long, very hot day. It decided this year to go directly from winter to summer, do not pass spring, don't forget to collect your sunscreen. We brought chairs to sit in, well, at least for me and Offspring, Wheeler has a permanent place to sit unfortunately. But we don't really sit around in one place at the air show, and I was afraid of the chairs getting stolen, or more likely, me forgetting them when we left. Plus they were rather heavy and the line was reallllllllllllllllly long to get in. So I chucked the chairs back in and at the suggestion of Wheeler, hoisted out the manual chair that we keep in the back of the van at all times for emergencies. I plopped Offspring in it, threw my purse on the back of it and off we went. I realized that I had the sympathies of every single person there because I had a disabled husband AND a disabled child. Except, I really don't. So practically every person we saw I made a point of saying the manual chair was a stroller of sorts. Except when we went through the gate, I didn't want them to confiscate the manual chair, so I just told Offspring to sit down and stay quiet.

Even though the line was honestly the longest line I've ever seen in my life for anything, it went so quickly. I love military precision, these dudes know how to get 100,000 people from point A to point B quickly and efficiently. Although when we were about 2/3 of the way to the front of the line, a couple of GIs came up and pulled us out of line to go around front and bypass security. So my worrying was for nothing, we sailed right through. They just said "do you have anything sharp?" to which we said "no" and they waived us through without searching and without me or Offspring going through the metal detector. I swear, the best terrorists would be disabled terrorists or people accompanying disabled people. You can get away with bringing anything anywhere if you're in a chair.

When we first got in we took a tour of a nifty hospital that is made entirely from stuff you can fit in (alot of) backpacks. They can parachute in from anywhere and be fully set up as a hospital, including isolation units, hazmat cleaning, an ICU, 2 operating rooms, patient wards and even a dental chair within 48 hours. They set it up in 18 hours in the practice run setting it up for the air show. We got a personal tour from the guy in charge of setting it up and it was really interesting. We also found that the hospital is fully air conditioned and the ICU is really, really cold. So we went there for a break at one point to get Wheeler out of the sun, and I needed the break too. I was pushing around a kid in a chair don't forget!

At the very end of the day, the Thunderbirds flew and it was verrrrrrrrrrrrrry cool. But part way through it, we were all overheating, Dog too, and so we decided to finish watching the show in the shade. Wheeler moved to back up and then stopped. He said "Look". I turned and looked. And saw that the cup for his chin control has melted. M.E.L.T.E.D. It was turned inside out and oozing down the sides. I shit you not!!! My eyes got as big as saucers and I said "well that's a new one!". He fiddled about for awhile and managed to be able to drive it anyway, but it was pretty sketchy. He had very little control because he had no traction on his chin, and so it was a scary roll out of there. We managed to get to the van and get back to his dad's despite it all (major props to Wheeler, that man can roll with the punches, that's for sure). His dad took a suction cup intended for sticking on a window to hang things from, cut off the metal piece, ran a drill through the base of it then mounted it in place of the melted cup (which looks like the chin cup knob here, 3rd thing down). Then we covered it with bandaids because the plastic was super slick, and that's how it remains now. We are trying to get another one ordered. I'm trying to decide if the cost will be in the 2 or 3 digits. My guess is $76. Anybody else want to guess? Whoa, I just went to the link to make sure I linked it correctly and the prices are at the bottom. $79. I am GOOD. Just call me the just-how-much-will-you-get-screwed-out-of-because-its-technically-a-medical-item whisperer.

Regardless of the melted chin cup, it was a very fun day. Offspring got to meet the F-22 Raptor pilots who flew that day (and they all were so young, omg I am old). He got an autographed patch, an autographed photo and an autographed hat. He was really excited about meeting the pilots, which was fun to see. He's usually so nonchalant about everything (exception: Star Wars) that I liked seeing him truly excited about something constructive.