PASS THE XANAX AND VODKA INSTEAD, PLEASE

Update: Shortly after doing his cough treatment yesterday, Colby went ahead and said the Y we were waiting for. So it took him approximately 50 minutes to say the letters in his name. But wait! It gets better. Today I let Colby play hooky from school. Shhhh, don't tell. Usually I would never do this. However, I didn't want him getting in and out of the cold for both school and swimming, so I decided on swimming. He missed swimming last week, and I didn't want him missing again. Here's the deal I made with Colby. Do your morning routine, i.e. cough treatments, get dressed, washed up, fed, etc. Then let's get out the eye gaze. Spell the letters in your name first thing, then you can do whatever you want, sweet obstinate boy, the rest of the time. Holy frick, it was a nightmare. We set up his eye gaze at 10:15, and by 12:15 the only letter he had said was C. Two hours, one letter. Lots of tears, but not lots of letter choosing. Then we got ready and went swimming. Colby did a great job. I love to watch him kick those legs in the water. Got home. Set up his eye gaze again, and said ok Colby, you need to finish saying the letters in your name. More tears. Whatever, Colby, just freakin' do what we asked you to do and be DONE with it. Forty-five minutes later, for a total of almost 3 hours of time, Colby FINALLY said the letters in his name. Is this kid ridiculous or what? We're going to keep at it. I'll either break him of his stubbornness on eye gaze, or he'll break me of having the will to live. Either way, he will spell his name on that thing.

Not much else going on around here today. Went through my mountain of mail finally. I now have 7 little piles sitting neatly on the kitchen table. Didn't do anything at all with the piles yet. Don't rush me. That'll be one of tomorrow's chore while Colby is at school, along with doing follow-up calls about that Neocate Jr. we're still waiting to hear about.

So Colby's nurse and I were discussing today we thought his trach felt a little "tight". Just a little resistance when you suctioned his trach. Decided to go ahead and do a trach change, even though he's not due for another week. Good thing we did, it was nasty! I was shocked to see such a giant mess of yuck in there. No wonder the kid has had such problems taking breaks off his vent the last couple of days. Poor bubba. I think it's because of the furnace running so much and the air being so dry. I have another humidifier around here somewhere. Time to get it out, clean it up and get it running.

I know it's redundant to say how cold it is. It's cold every-freakin'-where, and the weather is certainly something you can never change. But dammit, I just can't get warmed up tonight. I've got on gym socks, fuzzy socks, fleece pj bottoms, fleece pj top and a sweatshirt on top of that and am still freezing. Poor Colby, my hands are like ice cubes. Can't wait to crawl in bed under my electric blankie. Actually it's just a blanket right now. Found the blanket and put it on my bed, but can't find the remotes, haha. I've also sneezed around 50 times today, and that's usually not a good sign. Time to break out the Emergen-C in the morning I do believe. But now it's time to tuck Colby in and get me in bed also. Swimming days just wear us out. Maybe tomorrow I'll be able to report Colby spelled his name, Neocate Jr. has been shipped and the temperature will be above 20 sometime soon. Ah, who am I kidding, dream on, right?

SOMEBODY PASS THE WINE AND CHOCOLATE

Well, it's official, I have THE most stubborn child on the planet. I swear, there are days I could beat my head against the wall, really hard, and repeatedly. So could his teachers, therapist and nurse, I'm sure. What is it going to take for this kid to get motivated to do schoolwork?! I have no freakin' clue. It's obvious Colby absolutely knows how to use his eye gaze. As a matter of fact, he is very accurate and purposeful with it, when and only when he wants to be! Why doesn't this child want to learn? Why doesn't he show his teacher he can do the easy stuff so we can move on and give him more challenging activities? He won't even spell his name on the letters page. C-O-L-B-Y that's it. Just 5 stinking little letters, and he WON'T do it. Simply because he doesn't want to/doesn't feel like it. So the nurse came home today and told me all about this non-responding, not-trying bullcrap he pulled today. Then I have to be the mean guy. I told Colby, it's 2:00. You go to bed at 10:00. That gives you 8 hours to spell your name on eye gaze, and you're not getting TV, watching your fish, listening to your audio books, or doing anything else until you spell your freakin- frackin name. I could scream. So far he has done C-O-L-B. Not right in a row, he added practically every other letter in between. But as long as he picks the letters once I tell him to, we're going to count it. That took from 2:15-3:00. He's back there doing his cough treatment right now. As soon as that's done, it's right back to the eye gaze and waiting for him to pick the letter Y. For the love of corn, his stubbornness is out of control. His IEP is coming up in March, and it's going to be pitiful. The data that they take at school will show that he is mostly non-responsive, or didn't respond, or however they label it. It's complete bullshit because Colby knows this stuff. I know he does. I will not stress eat. I will not stress eat. I will not stress eat.

And here's the other lovely news I received today. I've been trying to reach the Ortho nurse up at Cincy Children's because it's time to get Colby's pre-op appointments on the books. They have to be done within 90 days of surgery. So I say, okay, we can start these any time after March 11. She says no, March 25 because Colby's surgery is scheduled for June 25th. Uh, excuse me? Not hardly. I said that's not what I was told. I was originally told Colby's surgery was June 25. Then someone called and said it had been moved up to June 11, and that's the last I heard. I've told my parents, all the nurses and my job this date so everyone can plan accordingly. She said well someone was supposed to call and let you know the surgery got pushed back to June 25. Well hell's bells, which is it?! Just give me a freakin' date and stop changing it. So she's going to look into it on her end and call me back. I stayed very calm in speaking with her. Actually she was very nice and seemed to have her shit together for the most part, so I couldn't get too mad at her. There are a buttload of departments at Cincinnati that will need to sign off that Colby is well enough for surgery: pulmonary, neurology, cardiology, endocrinology, hematology, anesthesiology and of course ortho. I did tell her that when we start to scheduled these appointments, hematology needed to be first on the list, considering the troubles we've had with all that in the past.

So to summarize, my kid is smart, although you could never tell it by his academic performance. Furthermore, I hate being the meanie weanie who has to make him do something he doesn't want to do. I HATE it, but he has to know we all have expectations for him. Also, Colby may or may not be having VEPTR surgery on June 11. Maybe the 25th. But really, the sooner the better, so he has the rest of the summer to recover/recoup.

That's it. That's all I've got today. Except that the bitter cold is back. Polar vortex they're calling it. Can't we just say it's f-in ridiculously stupid cold?! I've been going back and forth on whether or not to send Colby to school. If you have an opinion on this, by all means, feel free to keep it to yourself. For now I'm sending him. He's only outside for maybe 3 minutes at a time, at the most. Plus he wears a toboggan, scarf, Huggie, long sleeved shirt, back brace, t-shirt, pants, leg warmers, AFO's and a pair of long socks over his AFO's. We also cover his head when going outside. He hates it, but he doesn't need to be breathing in the cold air. He tolerates it well, except for the blanket over the head part. Okay, back to the torturous eye gaze. We just need a Y, Colby, just say a stinking Y and you can move on with your life.

COULD IT BE UNEVENTFUL AND ROUTINE ARE THE NORM FOR US NOW? NO WAY!

It certainly would seem so based on the last few days. Here's the scoop:

Thursday Colby got massage therapy. It's one of the services he gets through Hosparus. The lady who does it says it's actually touch/relaxation therapy, not really a massage. Whatever you call it, Colby seems to really like it. This time I sat him up on his side so she could get to his back. He was in relaxation heaven. The massage therapist has been asking me for months if I would like a massage, too. I finally got smart and said heck yeah! So when she comes next month she'll bring her massage chair thingy. Need to make sure I have a nurse that night so I can actually enjoy it and not have to worry about Colby. Can't wait.

Friday while Colby was at school I made some phone calls. Wish I had a shiny quarter for every gosh darn call and follow-up call I've ever made. I called the nurse in Ortho regarding scheduling Colby's pre-op appointments. Aren't you proud of me? Then I noticed Saturday she had returned my call and I missed it. What?! How in the world did I miss her call?! I was home all day! She must have called back in the 5 minutes I was outside helping get Colby off the bus. Figures. I'll call her back today, and we'll see if we can't get that process started. Yuck. Apria has finally billed Colby's secondary insurance to see if they will pay for his Neocate Jr. The status is "pending." Yeah, pend this, you freakin' dipshits.

Our weekend was uneventful, which is a good thing really. Colby's dad and stepmom brought him 2 new fish for his fish tank. One gold bubble eye goldfish and one black bubble eye goldfish. They are very odd looking creatures. So far, so good. The 3 are getting along swimmingly (haha) and no floaters yet. When the nurse got here I went to work to make up for the hours I had missed earlier in the week. We're supposedly getting a new nurse. She called off her first day, which was supposed to be Saturday. That didn't settle well with me at all, as you can imagine. She did show up yesterday, so we'll see.

Colby is off school today for MLKJ Day. I'm getting ready to get him up for the day. This boy is definitely going through puberty! A year ago he would have been wide awake by 8AM, but he's in there now just snoozing away. The apartment office sent out a memo that they need to turn off the water today from 10A to 3P because of "major plumbing issues" that they need to resolve. In other words, they need to batch up some ghetto pipes around here. I absolutely hate it here, have I mentioned that lately?! Of course they need to turn off the water on a day when we're both home all day. I'm prepared, though. I've already had a shower. I've made Colby's food and have filled all my pitchers with water to have throughout the day. Colby is getting pet therapy today, another service through Hosparus. When I first thought of pet therapy, I thought of a cute, yippy little lap dog. Oh no. The dog that comes here for Colby is a black lab mix. Her name is Sugar and Colby absolutely loves that dog. We lower Colby's bed and let Sugar get in bed with him. It's amazing to watch Colby relax with Sugar. His heart rate drops down into the 80's, and he moves that little hand all he can to pet Sugar. It's so sweet and touching to watch.

Okay, off to get kid up. Sorry there's nothing more exciting to report. We've just been trucking along, getting through this cold, dreary winter the best we can. Colby remains healthy and I remain sane, for the most part. Guess that's news enough to report, really. There was a time when "uneventful, survival, healthy and looking forward" was all I wanted for us. Now it's here and I'm not really sure what to do with it, but I'm learning!

SOME DAYS ARE A TOTAL KICK IN THE PANTS - LIKE YESTERDAY FOR INSTANCE

The thing about having a lot of wonderful, peaceful days in a row is that inevitably, something or somebody will come along and screw it all up. (Big sigh.) As was the case yesterday. Colby and I were just chugging along, doing our thing. He's back in school, the first full week since Christmas break. We took him swimming on Tuesday. I'm slowly, very slowly, but surely getting a few things done around here. Thank goodness Colby's nurse knows something about fish tanks. I at least unpacked the darn thing last week, and she was nice enough to set it up, put in the conditioning drops, etc. Just moved Colby's fish from the old Spongebob tank to his new, beautiful 10-gallon mansion. We'll see how it goes. Hope we don't have a floater by the end of the day. Christmas decorations are all finally packed away, and my usual mountain of mail is down to a smallish, manageable pile.

Then whammy, yesterday happened. Went to work, just like any other Wednesday, and my damn computer was down. I could run reports and that's it. Couldn't adjust my inventory, pack any medications, nothing. I waited around for 2 hours for them to fix it. It wasn't fixed so I went home. Total waste of time. Then I get one of those calls I dread so very much. From Apria of course, who else causes me such grief and annoyance? The old I'm so sorry, but we will be unable to ship Colby's Neocate Jr. because we're being told by insurance that Colby's formula is no longer a covered benefit speech. Superdee-duperdee. I had wine for supper last night, just seemed like the thing to do/have. Don't judge me. And so it begins, again. Phone call to Cigna to find out exactly WTH is going on. Phone call to Apria to tell them what Cigna told me. Apria now needs to bill Colby's secondary insurance. Will do follow up phone call tomorrow. I'm almost positive this will require more wine. Oh, and little Mr. Jabberpants has been up since before 6AM today. For a child who is "weak" and "tires easily" and has "severe respiratory issues" Colby sure doesn't need extra sleep! But dang, his mama does! I need a nap.  

Also, the time has come for me to get my head out of my butt and face the fact that Colby's VEPTR surgery is indeed going to happen. It's scheduled for June 11. Actually it's been scheduled since November, I just haven't wanted to talk about it and/or deal with it in any way. Thinking about pre-op appointments, the surgery itself, the recovery time, Colby being in pain/discomfort etc makes me ill. Literally makes my stomach turn and then the waterworks begin any time I think of it. I would give anything I have now or will ever have in the future to not put my son through this. I'm usually not a whiner. I've dealt with the reality of SMA for a long time, and I think I've dealt with it overall very well. But dammit, I hate this surgery for him. I HATE IT! I'll admit it, I'm terrified. There, I said it. Luckily there are many other local SMA kiddos who have had this same surgery by the same surgeon. I'll be able to better prepare us based on their experiences, advice, etc. I'm going to call Cincy Ortho Department in the next couple of days and start getting pre-op appointments scheduled. More wine, please! Much, much more wine.

Time to get in another load of laundry and work out before Colby gets home from school. Yes, working out. I'm trying to get back into shape. Not having too much luck, but I am trying. Or maybe I'll have wine for lunch, then I won't care about working out, or phone calls, or surgeries, or anything else really. Very tempting...

SPORTS, STRONGBOW, SNOW - helluva weekend

You need to stop what you're doing and read the funniest eye gaze story ever. The pastor from Hosparus called and asked if he could come over for a visit. I said sure no problem. So he gets here and I say hey, have you ever seen Colby use his eye gaze? He says no. I said well come on back to Colby's bedroom, we just got it set up. I pause the eye gaze so Colby can't use it. Then explain to the pastor how it works. When you see the red square moving around, that's the machine picking up Colby's eyes. He can move from screen to screen, etc. So I tell Colby that when someone walks in the room, he needs to say something appropriate such as hello, what's up, etc. I un-pause the eye gaze so Colby can "talk." The very first thing he says is, "The person is bald." Now, your question for me is, is the pastor bald. Oh yes, very. We all busted out laughing. Colby's nurse was laughing so hard she had tears in her eyes. Luckily the pastor is a very soft spoken, kind man. He got a kick out of it, too. It was priceless. When the pastor was leaving, he said hey Colby, I'll come back next month and you can insult me some more. Hahaha, good stuff. Gooooooood stuff.

Yesterday we had a laid back day. Even cuddled up with Colby in bed and took a 40-minute nap. Can't tell you the last time we did that. Well, I fell asleep, not sure if he did or not. Do you know how badly I needed a "don't do much" day? Seems like every day since Christmas break it's been one thing or another. I still did a few things. Made my bed, took out the trash, called in prescriptions, went Krogering, mailed some bills, that kind of crap. But it was really nice to have a day where the only people around were the nurses and family. My mom stopped by for a visit, brought me some homemade veggie soup. Yum. Did a killer workout DVD. Being out of shape stinks. Did another exercise tape today and it was even worse. Tomorrow I'll be using Biofreeze like they quit making it, I'm sure. Maybe I'll take the time for an Epsom salt bath, too. Not going to have much else to do when the great snowstorm of 2014 hits. I bought a puzzle last week with the hopes of working it over break. Maybe I'll start working on that. Or I could start taking down the Christmas decorations and/or cleaning. Nah, I'll stick with a hot bath and a puzzle. Maybe Colby will have a snow day on Monday. Wouldn't hurt my feelings one bit to keep my sweet boy home a little longer. We could work on the gingerbread house I got him for Christmas. It's still sitting in the box under the tree. Don't judge.   

So my Hoosiers got beat today. I pretty much figured they would. At times they looked impressive, but then other times they had some real WTF moments. But man-oh-man, how about them Colts?! What a comeback! Colby and the nurse are back in his room. He's doing eye gaze, watching Nickelodeon, and has no interest in the football game. (What is wrong with that child?! I've tried to raise him right!!) I was screaming, cussing, cheering, running back to Colby's room giving them updates. My brother and sister-in-law bought me some Strongbow Cider and glasses for Christmas. One of my favorite alcoholic beverages, ever. Took me an extra one to get through that game. Shoo, what a nail biter.

Okay, going to go hang out with kid before his 9:00 IPV and cough treatment. In you live locally, be safe over the next few days. It's going to get nasty. And for crap's sake, go get bread and milk, NOW. What is it with people scurrying to the store at the 1st mention of bad weather. Would you actually/literally die if you went without a few slices of bread or some milk for a couple of days? Get a grip already.

 

 

 

HAPPY NEW YEAR Y'ALL

You ever have one of those days where you're like, seriously? Am I on Candid Camera here? That was Monday for us. I got home from work and the wheelchair dude was working on Colby's chair in the living room. That's fine, I knew he was going to be here. He was here last week, but needed another part, had to come back. We're "growing" Colby's old manual wheelchair so we have a backup in case his power chair has problems. Then I look up and here comes another wheelchair dude from the same company to help the 1st wheelchair dude. Okay, no problem, hopefully they'll get done twice as fast. Then it's time to get Colby up in the chair to do adjustments. So we're back in his room getting on his back brace, lifting him up in the chair, etc. Then the phone rings. Gosh damn, can't anybody ever call when I'm sitting right here at my desk?! Apparently not. About 30 seconds later, wheelchair dude shouts from the living room, uh, there's someone at your door. Avon or something. It was my Mary Kay lady dropping off my order. Luckily I already had my check made out to her so I could keep working on getting Colby up in the chair. Getting ready to wheel Colby out in the living room to work on adjustments, and wheelchair dude says, uh yeah, there are 2 ladies knocking on your door. WTH?! Now what?! Turns out the phone call was the ladies from Hosparus wanting to stop in and do a visit. They said is this a bad time? Oh no, heck, come on in and join the party. It was just nuts. Colby sitting up in the wheelchair with 2 guys talking, making adjustments, asking me questions. The nurse taking care of Colby. And me talking to the Hosparus ladies and giving the report on Colby for the last couple of weeks. Then I notice they had done some drilling on the chair, and there are little metal shavings all over my carpet. Oh hey, no problem, I'll get the vacuum run as soon as they leave. And here's the thing. It's like this all the time! There is no telling what my neighbors think is going on around here. It's a freaking revolving door sometimes.

We had a nice New Year's eve. No big plans or going out. I had a dr appointment that morning. My dad came over for a visit later in the afternoon. There was a knock at the door. Apria delivery. Trachs. Drum roll please…they were the CORRECT ONES! I could scarcely believe it. But the nurse and I check and double checked. Yep, after arguing with "Crapria" for 6 or 7 months (I'm not kidding) they finally got it right. Colby and I watched the IU/Illinois game. Yikes. I may not know a ton about basketball, but I do know you're never going to win a game when you have 23 turnovers. Just sayin', Hoosiers. Get with it. Colby and I just chilled on the couch the rest of the night. I had my 1st attempt at making homemade French onion soup. Decent, but I've had better. Colby tried to stay up until the ball dropped to bring in 2014, but he couldn't quite make it. He zonked out right before 11:00.

I guess it's time to reflect on the past year and look forward to the new one. That's what we do this time of year, yes? Overall, I'd say 2013 was pretty darn good to us. There were some not-so-hot moments of course. But Colby has stayed healthy and out of the hospital. I know I keep harping on that, but trust me, it's a really, really big deal. I'm very pleased with our nursing staff right now. Hope they all stick with us for a while. I've also remained healthy. No cancer this year for me, thank you very much. That has to be worth something. My parents are all healthy (well, physically anyways ha-ha) as they can be. Extremely grateful for that. We have a roof over our heads, food in our fridge, reliable transportation and are surrounded by people who continually love and support us. Can't beat that with a stick, can you? The only real goal/resolution I have for 2014 is to spend more time with friends. Face-to-face time. Not texting or e-mailing. Real quality time girlie time. Oh sure, I'd like to lose 20 pounds, get better organized and bring about world peace, but hey, I'm just keeping it real at the moment.

It seems this blog update is getting a bit lengthy, so I'll wrap it up for now. It's cold and nasty here tonight. Going to curl up with my electric blanket and go to bed early. Happy New Year to all out there in blog land. I truly wish my family and friends much health and happiness in the upcoming year. Here's to kicking ass in 2014!