I GOT NOTHIN'

I'm pretty sure this will be the world's most boring blog update. I'll share how our day went. Here it is:

I went to work. No problems there. Got a lot done. Left 1/2 hour earlier than I originally thought. Boring.

Came home. Nurse helped me get Colby's back brace on and get him up in his chair. Day nurse left at 4:00. Colby and I watched the UK/U of L basketball game. Glad the Cards won. Blah blah. Night nurse got here at 5:00. We got Colby out of his chair around 6:00. We played with his hermit crab. We still haven't named that creature yet. Tried to get Colby's eye gaze running; it froze up. I got pissed. Cleaned out the fridge. We got out the dry erase board that Colby got for Christmas. Started a calendar, listing items like when his trach changes and port flushes are due, my work schedule, his school schedule, etc. Nurse knocked over my beer (sigh.) Boring, boring.

Colby is back there getting his night treatment. I'm watching Big Bang Theory. Going to tuck him in and read him some of his chapter book here in a few minutes.

Well, there you have it. Are you still awake? I predict tomorrow will be much of the same, and trust me, I'm not complaining. Hey, maybe I'll get some more of these Christmas presents put away. Trying to do just a little at a time. Or I really need to go through some mail. Starting to mound up again. Told you we were super boring to the nth degree. I'll do better tomorrow, even if I have to make up something.

WORKING A LITTLE, RELAXING A LITTLE, THAT'S WHAT WE DO

It's halftime of the IU game, so I'll do a quick blog update. Actually there's not much to report. I've been working at the hospital so my "boss" can get some well-deserved R and R and go on vaca. I worked M, W, Th and today. Haven't jacked anything up, yet. Nope, haven't broke anything, yet! Even had to change the printer ribbon on the overwrap machine, which I've done only 1 other time in the 4 years I've worked there. I hate that freakin' overwrap machine. I call it "The Beast", and it is not my friend. But I did it! Lickity-split, just-like-that, no problems whatsoever. Working tomorrow also. Don't know what I was thinking working so much while Colby is off school. Oh wait, now I remember, I need the dang money! But I sure do miss kid when I'm there and he's here. I had plans to go out tomorrow night, but they've suddenly been cancelled. I'm thinking that's not the end of the world. I can come home from work, get comfy, watch the UL/UK game, and spend some QT with my sweet boy.

No cute eye gaze stories because Colby's eye gaze has not been cooperating lately. Well, that's not 100% accurate. I've also been pretty lazy in not hooking it up for him. Also been lacking in the putting on of the AFOs and hand splints department. Hey, don't judge me, it's Christmas break! I'm giving the boy a BREAK. I knew the eye gaze had been acting up and now I've seen it firsthand. It keeps freezing up and seems to completely have a mind of its own. We've submitted the paperwork for a new one, as Colby is due for a newer model. One that runs faster and doesn't freeze up, hopefully lol. The paperwork for that is floating around somewhere in Insuranceland and Medicaidville. Just give us the damn machine, because if you deny it, we'll appeal it, we won't give up, etc. Yesterday when I set up the eye gaze, Colby first said, "know--fast--go, go, go". Then he said a bunch of this and that, then the machine froze up. May try it again tomorrow afternoon.

So my SMA buddies and I are all in a tizzy over the newest, latest and greatest model of CoughAssist machine. Actually Colby has used this piece of equipment for 10 years and I have never seen an improvement/change in the CoughAssist until now. And wow, it's super duper special fantabulous and we MUST have one! Currently the CoughAssist is large, heavy, cumbersome and not portable, meaning it has to have power and does not run off its own battery source. Furthermore, it takes a special type of battery. To summarize, it's a giant pain in the ass to make it portable because you need the big machine AND the backup battery. The new one is smaller, more lightweight and is portable/runs on a charge. Oh yeah baby. This new CoughAssist would make taking Colby anywhere so much easier. I know the RT we talk to at Apria is on vaca this week. But as soon as I get in contact with her, we're getting one. Some way, some how. Even if insurance says no and Medicaid says no, then I'll do fundraisers to get the money and will buy one out of pocket. Want it. Need it. Gonna get it, end of story.

The game is back on. Need to get back to cheering on my Hoosiers. Colby's nurse just got done giving him his IPV and cough treatment. Want to get my boy tucked in for the night. Later, taters. 

I THINK WE'RE ABOUT CHRISTMASED OUT

So why haven't I blogged for the last week or so? Where have I been? I've been running around like every other fool getting ready for Christmas, that's where. Every day for the past week, I got up and thought, okay, who are we going to see today? Whose present do I need to get wrapped and out the door, today? Hey, I'm a busy lady, don't judge me, haha.

Cute story about Colby. He had a school field trip to the mall last week to see Santa. I wasn't able to go because I had to work, so I asked my dad to go. I thought some grandson/grandpa time would be nice for them, something besides a stinky trip to Cincinnati Children's. I was told a good time was had by all. I had given Colby some money in case he wanted to get something. They asked Colby, do you want to go to the toy store and get you a toy, yes or no. He answered NO. They asked again, Colby, do you want to get something for you while you're here, yes or no. He said NO. Then they asked, Colby, do you want to get a present for you mom, yes or no, and he said YES. Aaaaaah, such a sweet boy. He picked out some lotion and a candle holder, both of which I love of course. So proud of him for wanting to get a present for someone else besides himself. Makes me think I'm actually doing something right around here after all.

It looks like the North Pole exploded around here. Of course, Colby has been opening presents off and on since December 3rd. Guess that's how it's supposed to look with a 10-year-old around, huh? He opened his gifts from me last night. His favorite by far was the little fiber optic Christmas tree I bought him for his room. He jabbered and jabbered when he opened it. Then when I plugged it up and turned it on, he jabbered even more. It was really sweet. If I had known a 24-inch, $15 tree was going to make my kid so dang happy, he would have gotten one years ago!

Took Colby to Mass today. He looked so handsome in his khakis, white shirt and red Christmas tie. Now we're home chilling out. I'm baking a frozen pizza (again, don't judge me.) Sipping on some really good red wine one of Colby's nurses gave me. We're both in our pajamas. Just got done watching A Christmas Story. Last year was the first time I had watched that movie from start to finish. I knew the important parts, tongue sticking on the flagpole, opening the leg lamp, etc. but never watched the movie in entirety. My stepbrother loves that movie. So to honor him for being such a great brother, I watched it last year from end to end, now I'm hooked. Colby and I have watched it like four times this past week.

That's it in a nutshell. Colby and I are blessed beyond belief. We got way too many presents and are both stinkin' spoiled rotten. Off to snuggle with my sweet boy now, which is the BEST gift I could ever get. Merry Christmas fellow blog readers. Hope your holidays have been filled with much health and happiness. 

DECEMBER BACK TO SUCKING A LITTLE

Trying to decide what to blog about tonight. My mind is racing, more full of jumble than usual. Seriously, is that even possible? Considering the unimaginable tragedy that happened in Newtown, the silly in's and out's, business of our lives doesn't seem to have much relevance at the moment. Honestly, can you even begin to think what that community is going through? No, absolutely not. I can't even find the words to describe the shock, disgust and amazement of it all. I've always been a firm believer that things happen for a reason. That in order for one to feel goodness, there also must be bad. Or to understand joy, you must also feel pain. A yin and yang kind of thing I guess. But this cold, senseless, brutal attack on a group of innocent school employees and students? This close to Christmas? Nope, I can't, no matter how hard I try, find an explanation or reason for it. Still shaking my head in disbelief. I've relied on others for details, as I just can't watch hour after hour, report after report of others' pain, loss and suffering.

So with that being said, what do I write from here? Well, if it's one thing I've learned from Colby's diagnosis, is that life continues to move forward. Time marches on. Plain and simple. Sometimes you experience joy, sometimes you experience pain, and hopefully in the end it's more of the former than the latter. The one thing that really matters is that Colby is doing great. He had another excellent week at school. Of course I'm knocking on wood, holding my breath and rubbing a rabbit's foot when I type that (ok, not really the last one.) He has 4 more days, then Christmas vacation. He has a field trip Wednesday to the mall to see Santa. I swear I'm considering not letting him go. With all the violence that has occurred in public places the last few months, can you blame me?! Let's face it, Colby is totally defenseless. If something terrible happened, it's not like he could run and hide. How awful that I'm even having these thoughts. But it's my job to keep my kid as safe as possible. Am I crazy for thinking like this? I don't fancy myself as a paranoid, non-trusting kind of person. Most of the time I'm too busy worried about Colby's overall health and respiratory status to give anyone else or anything else a second thought. But lately, I just don't know what to think about people and what in the world could possibly be going through their minds. Selfish, crazy fucks.

Christmas tree is up. Outside lights are up as of today, courtesy of the ex. Yes, we have an odd relationship, you don't need to remind me. I'm going to hang up a Colts stocking for me and a Spongebob stocking for Colby. Hung up 2 wreaths. That's enough! I have a ton more Christmas decorations that I could get out, but I just don't see it happening this year. I don't have the room, time or energy to go nutsey-fartsey about Christmas decorations around here. Well, I have some hand towels that will look cute in the bathroom. Other than that, going to pack up the extra stuff and send it back to my mom's for storage. Am I done with my shopping? Good question, heck I don't know. Don't even have a list made yet, so hard to tell. Been working off the list in my head, which is probably a really bad idea, haha. Getting together with my BFF to make Christmas goodies on Tuesday afternoon. I'm super excited about that. Christmas baking, woo hoo, love it. Christmas shopping, boo hoo, hate it. I'd rather give you a batch of your favorite cookies than go out and buy you a sweater. That's just how I am.

Good night blog readers. Hoping for a safe, healthy and happy tomorrow for all those I know and love. I'll be quite content with that.

DECEMBER IMPROVING

Been a good, actually a great, weekend. Didn't get quite as much accomplished as I wanted, but do we ever? Bit the bullet and got a new washer. She's a beauty, 2.7 cubic feet of a clean-clothes-making machine. No more dragging clothes over to my mom's, or the laundry facilities here at the apartment, or anyone else having to wash our clothes. We can do them from the comfort of our kitchen. Good stuff.

Got the tree up. That's the only Christmas decorations we have up at the time, but it's a start. It wasn't without a moment of panic. It's a pre-lit tree, and I've had it for 6 years. Pulled it out of the box, plugged up the first section, and some of the lights didn't work. Whaaaaat?! That's never happened before. So I was told you have to go around the tree and check every light that is out to find the bad one. Sure enough, found the loose bulb and now all lights on the tree are working. I keep our tree simple. Only thing on it are sentimental ornaments, no tinsel, no garland, just wonderful memories. Colby isn't much for helping to put on the ornaments. After about 6 minutes of it, he was done. So I worked on it on and off the rest of the day. Check it off the to-do list, and that makes me, as Phil on Duck Dynasty would say, "hap-py hap-py hap-py."

Eye gaze story: I was putting ornaments on the tree, Colby was sitting up in his chair doing eye gaze. He said, "shapes, triangle." I thought OMGosh, how cool, because a Christmas tree is, in fact, the shape of a triangle. Dang my child is a genius. Then I was going, "Oh look Colby, you made this ornament at school" or "Ah Colby, we got this ornament when we went to such-and-such a place," etc. He looked at his eye gaze and said, "enough." Then the very next thing he did was turn on the TV through his eye gaze. Ha, guess he told me what he thought about the whole ornament-reminiscing moment I was trying to have. Yep, he's 100% boy.

Going to wrap this up now. The Colts are on. I haven't had a shower since Friday afternoon. Colby and I both need some lunch. Happy Sunday everyone. Only 17 freakin' days til Christmas. I will be ready. I will be ready. I will not lose my mind between now and then. I will not lose my mind between now and then.  

DECEMBER KIND OF SUCKY SO FAR

Okay, I'm just going to say upfront this has been a shitty week for me. I feel stressed, overwhelmed and downright frazzled. So allow me gripe for just a minute. Colby's insurance has changed, so at the moment that's a mess, many phone calls for that. Still working on getting Colby's room in order. His supply order for the month was incomplete, more phone calls. His IPV machine is still not working right, more e-mails and phone calls. The van is still sputtering. The washing machine is officially dead. There's not enough room in this living room to cuss a cat, nonetheless put up a Christmas tree. Whew, had to get that off my chest.   

Now, enough of that whiney stuff! I know things will get better. Probably not today, but eventually all the above-listed issues will get resolved. So I need to shift my attitude to one of gratitude. Doesn't make any sense to list 30 things I'm thankful for, then turn around and gripe, whine and complain because things aren't working out the way I want. There have always been a lot of things go right lately. They are as follows:

Monday night was the Hosparus Christmas party. You talk about a special, fun, heartwarming good time. As always, it was awesome. Colby got to hang out with Santa, get his face painted, do arts and crafts, visit with friends, and open presents. Lots and lots of presents. Colby was worn out by the time he went to school, then to the party, but oh my it was worth it. Colby's room is looking better little by little. Got the carpets steam cleaned. A friend of the family got us a bookcase. I was going to put it in Colby's closet for some additional storage. However, it looks so nice I decided to leave it out in his room. Just gotta keep plugging away at it. I'll be working quite a few extra days over Christmas. Quite honestly, I'm happy to get the additional hours/pay. Can't turn down work when it's available. I'm certainly in no position for that.

Went out with my BFF Amy tonight. We went to Cheddar's then decided to do a little shopping. Hit Target and Walley World. It's been forever since we've done that, and it was great spending some QT with her.  

So my new favorite show is Duck Dynasty. I've had several people tell me how funny it is. Dang, they aren't kidding. I watched it for the first time the other night and thought I was going to fall off the couch laughing. I'm sure some of it is scripted, but dang, that is a hilarious bunch of rednecks.

I'm off to bed. Determined to get the Christmas tree up this weekend. Don't know where in the world it's going, but we'll figure it out somehow. I told Colby we could just string lights around the elliptical, but he didn't seem to fancy the idea. Time to figure out some creative furniture arranging. Sigh. Nothing is ever easy around here. Never. Ever.