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.

THANKFULNESS

I saw on Facebook where people took the month of November and each day said something they were thankful for in their lives. Well, I didn't do that. I decided to wait for the last day of the month to do it. Leave it to me to be always running, just always running behind. Here's my 30 days of November thankfulness, wrapped up in one nice neat blog entry:

1.         Each and every moment I have with my sweet Colby boy, whether it's the good, the bad or the ugly. Each and every day the Lord gives me to get up, get going, and be a productive person in some way, shape or form.  

2.         Three of the most lovely, patient, generous, fantabulous parents EVER. I couldn't do what I do for Colby without them. No way. I have other family members who are pretty cool, too. Wish I got to see them more than I do.  

3.         God, Jesus, all that forgiving of my sins stuff, along with my church, the Cathedral, and my mom and stepdad's church. They have been very kind and generous to us over the years.

4.         My girlie friends. I have several exceptional women in my life that are fun to be around, genuine, supportive and all around good peeps. They have helped me through so many hard times. Loves my BFF's!

5.         The Sellersburg Moose Lodge. What a great group of people, very generous, thoughtful, and they can plan a heck of a fundraiser when called upon to do so.  

6.         Colby's school and the amazing staff there. Wouldn't even think about sending him anywhere else. You must have a special calling/gift to work there I do believe. They're all so wonderful.  

7.         Cincinnati Children's Hospital. Without this facility, there would be no 10-year-old Colby. I'm quite sure of it. Exceptional hospital, so glad it's only 2 hours away.  

8.         Booze, in particular vodka, Miller Lite, red wine, white wine, Bailey's, homemade margaritas, RumChata, lemon drop shots and flavored vodkas. Okay, let's just say booze.

9.         My thyroid stuff is done and over with.  

10.       The seasons. I would hate to live in a climate that never changed. Autumn is my favorite, summer my least favorite. I don't do humidity.

11.       Four sweet, dedicated, professional nurses. I never thought it would work out, but we all work together to take care of Colby. So glad to be wrong about that.  

12.       Music. Sometimes the only thing that keeps me sane is sticking in my earbuds and turning on my iPod. I listen to everything from Bocephus to Beyonce to Buck Cherry.

13.       Hand dip, soft serve, on a sugar cone, in a Blizzard, accompanying a piece of cake of pie, any flavor, any add-ins, all things ice cream.

14.       Contact lenses, because wearing glasses on my face sucks. Now if I can just find the nerve/money to get lasik surgery.

15.       SMA mommies and groups. We share good news, bad news, information, supplies and support for each other. Nice to know we're not alone in this wild and crazy SMA journey.  

16.       Match.com. Okay, I'm being sarcastic on this one. However, it has provided many laughs and good stories over the last couple of months. Honestly, what a waste of my time.

17.       Facebook has allowed me to stay in touch with friends, get back in touch with others, share pics and what's new in our lives. I'm not as addicted to it as I used to be, but I'm a regular Facebooker for sure.    

18.       Colby's ECO eye gaze. It's been a long time coming, and Colby has come a long way on using the ECO for communication. He said this today, "I have to have to have Spongebob please favorite understand favorite." How cool is that? And his awesome speech therapist for taking the time and learning to use it.

19.       Homemade cookies. Eating the raw dough (don't act like you don't.) The smell when they're baking. Nothing better than eating a hot cookie fresh out of the oven.

20.       Birth control pills. Self explanatory.  

21.       Indiana Hoosiers basketball. Born and raised on it. Love it, especially this season. GO IU - fight fight fight.  

22.       Will Ferrell movies. If you ain't first, you're last. Favorite movie of all time, though, is "Fried Green Tomatoes."

23.       Spongebob Squarepants. Not for me of course, but for Colby. He still absolutely loves the little square dude who lives in a pineapple under the sea. He's so content when he watches, like it's his first time, even though he's probably seen the episodes at least 100 times each.

24.       Nail polish. When I need a pick-me-up, I paint my nails. It's my thing.

25.       The ability to think for myself and make my own decisions, along with deciding what is best for Colby. I'm probably independent to a fault. Not that there's anything wrong with that, right?

26.       Being raised in a small town. I like being able to say, "My hometown doesn't have a stoplight" or "I can name every single person in my graduating class." There were only about 70 of us.

27.       The ability to stay positive and have a sense of humor. Let's face it, we've been through some shitty times around here. Most of the time I can find some glimmer of hope, or some goofy humor in what's going on around me. You may call it sick and twisted, I call it survival. Colby is a pretty funny kid, too. His eye gaze comments or facial expressions are hilarious sometimes.  

28.       Any beach. Any ocean. Anywhere. Can't wait to take Colby on vacation again some day, where we can plop our butts in the sand and watch the waves all day.

29.       I have the physical strength and mental toughness to be a good mommy to Colby. SMA is not for wussies! There's a saying that goes something like, you never know how strong you are until being strong is your only option. Something like that. Yeah, I get it.

30.       Each and every moment I have with my sweet Colby boy, whether it's the good, the bad or the ugly. Each and every day the Lord gives me to get up, get going, and be a productive person in some way, shape or form. Most thankful for these, so they're worth repeating.

I LOVE MY JOB! ACTUALLY I REALLY DO

This week has been good at times, so-so at times, and downright stinky at times. Good in that Colby is doing well at school. No major oxygen drops or emergency trach changes this week. Always thankful for the "uneventful" days. I worked yesterday at the hospital and didn't break anything. That's always a plus. Actually got a lot of work done. Stinky because I think the washer is dying a sad, slow, miserable death. Did a load of laundry Monday and it did the same thing again, won't spin out and has a funny smell. That's not good. So I'm going to have dad look at it or take it somewhere to get looked at one more time. Praying it's fixable, even if it can buy us a couple more months. Need to use benefit money to pay for the shelving unit and soon get a van. Speaking of the shelving unit, everyone who has seen it loves it. I was pleasantly surprised when I got the invoice. The sales dude called the material company and got me a discount on the materials (explained the whole single mom, special needs child thing to them.) Then he gave me another discount because of all the hassle the install dude caused the day/night of putting up the shelving. How awesome is it when you get a bill and it's LESS than you originally thought? That never happens! Just can't bring myself to start looking at vans yet. It seems I might have a sentimental attachment to the Terdmobile, go figure. We've hauled Colby a lot of miles and a lot of places in that vehicle. The hassle of van shopping and thought of how much a van is going to cost practically makes me hurl. TDB, huh? Time to move on. Just suck it up and do it I keep telling myself.

After much research, many phone calls, and all around banging my head against the wall, it would seem we're forced to go back to the nursing agency we were using before Colby got his trach. Long story short, this agency takes the program that will provide Colby's supplies and services, so we're stuck with them. Made the call for that today and am waiting for them to call back and schedule a re-cert, or new admission, or whatever the crap it is we have to do to get this process started. Oh joy. Can hardly wait. Good grief, just shoot me now. I hear they "cleaned house" and have all new office staff now, so that's good to hear. Also, the 4 nurses that Colby has through the current agency are also signed on with this other agency, too. I made it perfectly clear to the intake person today that we love our nurses and schedule and don't want them bothered and/or changed. We'll see. Please God, let this be an easy transition, please, please. I honestly don't think I can take another clusterfuck mess, especially when it comes to Colby's nursing care.  

I was thinking today, when it comes to "working" I've just about done it all. I've done the full-time job, aka career, with benefits, vacations, etc. I've worked a kabillion part-time jobs on the side, bartending, waitressing, dispatching, whatever came along to make some extra cash. I worked from home doing medical transcribing to accommodate Colby's schedule for over 5 years. I've been a stay-at-home mom, both while married with 2 stepkids and of course now being single. I think it's fair to say I have lots of work/career experience. Let me tell you something, being a stay-at-home mom is hard work! Anyone who doesn't do it and tells you it isn't hard is deadass wrong, and anyone who does it and tells you it isn't hard isn't doing it correctly. Just sayin'. But please know I'm not complaining. I made the decision when Colby was diagnosed, a loooong 10 years ago, that I would stay home and give him the care he needed. Working to make money was no longer the priority, giving Colby the best quality of life possible was, and still is, the main priority in my life. I don't regret that decision, not for one millisecond. And I can promise you I spend just as much time, and put just as much if not more, effort into being a stay-at-home mom as I would for an employer. I'm up early almost every morning trying to get stuff done before Colby wakes up, because once he's up for the day, it's all about him and his needs. I'm up after he goes to sleep trying to get more stuff done. While he's at school I'm making phone calls, running errands, cleaning, organizing, occasionally working at the hospital, etc. I assure you I do not spend my time brunching with the gals, plopping my butt on the couch and watching TV, or shopping for new shoes. And I absolutely love it. Love, love, love being Colby's super mama, advocate, go-to person and sidekick. Me and him, we go together like peas and carrots! How blessed am I that most days I can watch Colby get on the school bus and be here when he gets off the bus in the afternoon? I'm thankful I have the opportunity to do so, very thankful. So yes, I "work". I work to the best of my ability every day of my life to provide for my sweet boy in the ways I can. Trust me, the benefits of having Colby in my life far outweigh the nice big paychecks I no longer earn. I get paid in jabbers, funny eye gaze comments and sweet snuggles, and it doesn't get any better than that.

LOTS ON MY MIND. HERE'S SOME OF IT.

THURSDAY was Turkey Day. We rushed/hurried to get ready by 9 a.m. because that's when my dad wanted to leave. (Seriously Dad, do you know what I have to do to get Colby and me up and ready that early?) Now he knows I'm not crazy, as the van sputtered/jumped a couple times on the way up and a lot on the way back. So yep, van is going back in the shop and is NOT coming back this time until it's fixed. There were 7 of us for Thanksgiving dinner, and as always it was totally delicious. You make think you know someone who makes the world's best stuffing, but sorry, you don’t. My Aunt Donna has that title. I had 3 helpings of it just to make sure! And there was my fabulous carrot cake for dessert (pumpkin pie, schmunkin pie, yuck.) Then we had to rush/hurry to leave at 4:30 because Dad wanted to get home before dark. I don't blame him, especially with the van acting all stupid, but I wished we could've stayed and visited longer. I'm so mad at myself. Took my camera and didn't take 1 single picture. Bad mama!

FRIDAY was a lazy day for Colby and me. We hung out in our pj's all dang day. I wouldn't have put on normal clothes except for we had a nurse coming at 4:00. There was a Spongebob marathon Nickelodeon, so you know Colby was in heaven. I did manage to do some laundry at least, along with stuffing myself with leftover turkey, stuffing, orange salad and carrot cake. Colby's nurse and I worked 2.5 hours in his room getting things better arranged/organized. It's really starting to shape up in there. Looking forward to getting his TV mounted and get that furniture out of here. There is no room! His tall storage wardrobe is shoved in my room and his dresser is sticking out in the hallway for the time being. Can you say crammed and cluttered apartment?!

SATURDAY I worked at the hospital. Working there on the weekends is great, very quiet and I can get a lot done. Night nurse got here at 4:00. We sat Colby up in his chair and he used his eye gaze. The funniest thing he said was "I know I am delicious." OMG I about fell off the couch laughing when he made that sentence. That kid absolutely cracks me up! Then we gave Colby a bath. My BFF Pam called and said hey, we're going to Bearno's, come on over. And guess what?! I went! Just like that. Do you know the last time I was able to do something spur of the moment? Oh IDK been at least 10 years, I can tell you that for sure. I was home by 10:00, but had a good time nonetheless, even if I looked like a big goober still wearing my scrubs.

TODAY has been weird. Around 4 a.m. I was awakened by Colby's pulse/ox alarm. Shot up out of bed to check it out. It was his heart rate, not his oxygen. Huh? It got as high at 140. I didn't know what the crap was going on. I tried all my tricks. Dry slobber rag. Changed his diaper. Made sure he wasn't too hot. Took his temp, no fever. Suctioned his mouth and trach. Curled up in bed with him. Heart rate still up. Oh great. Gave him some Motrin and it finally started to get better. We ended up going back to bed around 6 a.m. He's had a high heart rate off and on all day. Have had to give Motrin 3 times. He had some diarrhea earlier so maybe he was having stomach cramps/issues. I'll be keeping a very close eye on him tonight. Hopefully he can go to school tomorrow. I went to Mass, always one of my favorite weekly activities. Also watched my Colts and Hoosiers win, another favorite activity of mine.

TONIGHT there is a very special girl on my mind who holds a very special place in my heart. She's sweet, sassy and funny as all get out. She is having surgery tomorrow. I'm praying, praying, praying that all goes well and am sending warm hugs and get well wishes her way. If you don't mind, will you please do the same? Any and all good thoughts and energy is much appreciated. Thank you. 

TURKEY DAY PLANS, WHO NEEDS 'EM?!

Who cleaned the apartment (well, a lick and a promise), made a 3-layer carrot cake with glaze, got Colby up (including trach care, feeding and range of motion exercises) all before noon? That would be me, super mama! It's okay, you can bask in my awesomeness, I'm used to it. This morning I had the timer set on the stove for the cakes, then had the stopwatch running on my cell phone for the IPV cycles with Colby's cough treatment, all the while getting phone calls and texts. It was domestic chaos, and I was loving every crazy second of it. Hanging out with Colby, cooking in the kitchen, I was in my element. Still have to frost the cake and make the orange salad for Turkey Day. Of course I also have to go Krogering to get the orange salad ingredients. Woopsie, forgot those items on my grocery list when I went to the store, just 3 freakin' days ago.

So the good news is Colby's shelving system is installed and it is fabulous, wonderful, super-duper, everything I wanted it to be. The bad news is it was a complete cluster…mess around here on Sunday. I'm not sure why the guy wanted to install the shelves on Sunday, but he did. Heck I don't care, just get it done. I was told 2 weeks ago by the owner/sales dude when this appointment was set up that the install dude would be here between 9:30 and 10:00. Cool. So I get Colby up at 7:30 on a Sunday morning, drag his butt out to the couch by 9:00, then we sit. And sit. And wait. And wait. No install guy. Long story short, he chose to do another job first and didn't get to the apartment until 3:40 p.m. Then he was here until 11:00 that night putting up the shelves! Can you imagine how pissed, how really, really pissed I was by the time he left?! Colby had to stay on the couch that night and there we were with all his equipment setting around on the floor. So frustrating! But I love the shelves. Love, love the shelves. Don't have them arranged exactly how I want, but it's so much better than it was getting that big furniture out of Colby's room. Still need to steam clean Colby's carpet and also get a swing arm/mount for Colby's TV. Right now he's having to watch his little portable DVD. I think Santa is bringing the TV mount early.

The plan for us for Thanksgiving was the same as it has been for the last couple of years. Colby had school Monday and Tuesday. We were going to leave Tuesday after school and go to my aunt and uncle's for a few days. I love spending time with my aunt, getting in the kitchen with her and cooking. We were going to come back Friday because I'm working this Saturday at the hospital. Yep, that was the plan. But anyone who knows us knows our plans often get changed, whether we like it or not. The van is still not 100% fixed I don't think. Nobody can find anything wrong with it, but trust me, it's not running exactly the way it should. So there was that to think about. Then I get a call from Colby's nurse at school yesterday. He had a blood/mucous clog in his trach and they had to do an emergency trach change. Well, that was all she wrote for me. No way was I going to travel with Colby, alone, 1.5 hours away, with a van that may or may not be running right, hoping and praying that we got there without Colby's trach needing attention again. Couldn't do it. So I told my aunt we would just come up for the day on Thanksgiving and that way Dad could travel with us. I hated doing that. Absolutely hated it. Had to have a little pity party/cry fit that we weren't able to go. Not to mention that I already had the van 3/4 packed. Grrr. Sigh. But eventually I decided it is what it is. The bottom line is Colby and I will be celebrating Turkey Day with our family. I'm thankful for that, even though it's not how I originally planned. If it's one thing SMA has taught me, it's flexibility in that the plans you planned may end up changing, and you can plan on making a new plan to the plan.

Colby is sitting up in his chair watching some TV. He just got done with eye gaze. He actually went to the medical page and said he needed trach suctioning. That's so great! I went over and immediately suctioned his trach. He also said all kinds of other goofy stuff, but when he specifically asks for something to meet his needs, he's going to get it from Mama. Time to put the cream cheese frosting on the carrot cake. Going to try to get it all on the cake and not in my belly. Not making any promises though, haha.

NOT A LOT GOING ON, AND I'M LOVING IT

Colby and I are having a super lazy, laid back kind of day, and honestly I'm loving it. Dad came over early and picked up the van. If you remember, there are 2 things wrong with it, the lift sometimes wouldn't go down and frequently, not all the time, there's a sputtering when you're driving. Well, we've made some progress. Dad took the van to Superior and the lift is now fixed. He said the van also finally did the sputtering thing when he was driving it. So, he's going to keep it for a few days. I just keep saying, please don't be the transmission, please don't be the transmission. I don't know crap from apple butter about vehicles, but I do know transmission problems are expensive to fix. So please don't let it be the transmission! Hoping it gets fixed by Tuesday afternoon so we can go out of town for T-giving.

Mom came over earlier today and helped me give my stinky kid a bath. Colby was working on his eye gaze earlier. He kept going to the calibration page, then said Spongebob 3 times in a row, so I put it up and let him watch what he wanted. Can't believe still, after all these years, the attraction Colby has for that goofy yellow sponge who lives in a pineapple under the sea! He started watching it when we were in New Jersey for Colby's g-tube surgery, March 2003, and he has never waivered from it, ever! I tried to get him to watch Toy Story today for a while, but nope, he wanted nothing to do with it.

Colby had a darn good week at school again, with the exception of one really bad oxygen drop. But it was over quickly, no trach change necessary, and he was able to stay at school the rest of the day. Just goes to show, you always have to be on your toes with an SMA kiddo. You never know when a little plug or a little chokey-choke will come along. And when it does, you'd better be ready. The nurse said Colby's oxygen got to 37 and that he was turning blue before she could get his trach cleared out with cough treatments and suctioning. But she's an excellent nurse and is diligent in her care for Colby. Actually she's probably more alert and ready for an emergency than I would be if I was with him at school. So I don't think she did anything wrong, it was just a freak thing. He's been doing great taking windows off his vent. Did one for 1 hour 15 minutes today. What a stud he is!

Well, that sums up our exciting lives, haha. I've been back on an exercise kick lately. So after Colby's IPV and cough treatment at 3:00, I'm going to do an aerobics tape. We have a nurse tonight. I have big plans to go Krogering. I think we're pretty much ready for the shelving dudes to come over on Sunday. Colby's daddy came over last night and got the biggest pieces of furniture out. Ready to get that task done and over with. Then on to van shopping we shall go! Bye for now.

MID-WEEK UPDATE - YOU KNOW YOU WANT IT

What happened to the beautiful weather?! It seems to be long gone now. Had to get Colby on the bus in the rain yesterday, which is one of my very least favorite things to do, like, ever. Luckily it wasn't pouring, not too bad. So far Colby is having a great week at school. He's using his eye gaze like crazy. Last night we set it up for him and he said, "I color some ugly things." OMG I was cracking up. Where does he come up with this stuff?! Today in speech therapy he said, "favorite photo album." Again, WTH, don't ask me. His speech therapist said well Colby we don't have a photo album for you, and Colby's response to her was "we should." So yep, you guessed it, I'll be out the next couple of days finding him a small photo album and filling it with some pics for Colby. He also said, "I think about books." Guess I know what to tell Santa to get Colby for Christmas. Then he said, "awesome Colby." Ha, my kid have a self-esteem problem, not hardly. Tomorrow he has make up school pictures. The pics they took of him the first time absolutely sucked. The glare on his glasses was so bad you couldn't even see his eyes. And yes, I wrote a note to the school and let them know about it. Hoping tomorrow's photo shoot goes better.

Listen to my words, all the mail is caught up around here! How many times have you ever heard me say that, uhhhh, never! I don't care that we'll get more mail tomorrow. TODAY it's caught up, organized, filed, dealt with, etc. Makes me warm and fuzzy all over. I also started doing some stuff in Colby's room in preparation for the shelving system to be installed this weekend. Started out small, got his bookcase and toy box cleaned out. So I guess we'll just move Colby into my room for a couple of days. Slumber party!

Many people I know are doing this 30 days of thankful thing where you name each day something you're thankful for. Guess I'm about 13 days behind, but you know something I'm thankful for? Colby's nurses. Bet you thought you'd never hear me say that, huh? When Colby came home from his trach surgery back in June, I absolutely hated the idea of having a nurse up in here all the time. But I have to admit, they're great. I think we're very lucky in that we have experienced, dependable, easy-to-get-along-with nurses. Colby has 4 nurses that take care of him and I like all of them. Can you believe it? Also really liking the nursing schedule. It's a nice combination of having some time for just Colby and me, and getting extra help when needed.

Guess that's about all that's going on around here. The poor hermit crab (no, we never named it) hadn't eaten in two days. When I cleaned house last time, I moved the crab supplies. Sunday I cleaned out his cage and couldn't find the supplies anywhere. Found them tonight finally, and he's still kicking, so I think he/she survived. (How do you tell if a hermit crab is male or female, I must ask?) Off to bed, more at a later time and date. Mama out.

HAVING A GREAT WEEKEND

"Good morning world, and all who inhabit it!" That's one of my favorite SpongeBob quotes. Going to give an update, then start getting kid up for the day.

The weather has been gorgeous the last couple of days. I had been kicking around the idea of taking Colby to the zoo. We had a day nurse, so we had someone to go with us (poor thing, she had to push the wagon with ALL of Colby's equipment). Plus I had 3 free passes, so I thought yeah, let's do it. Colby's nurse got here at 9:00 and we worked together to get Colby ready. We went early and got home early, thank goodness. By the time we were leaving I couldn't believe how long the ticket line was. Going to the zoo is not one of Colby's favorite things to do. He never has been that into it, and yesterday was not exception. It went like this at most exhibits: "Oh Colby, look at the polar bear doing a back flip in the water! Hey Colby, there's a large polar bear down there if you would care to look. Colby, open your eyes. Colby Michael, stop looking up at the sky, at the little boy next to you, and look at the gosh damn polar bear!" But I think he was happy just getting out of the apartment and enjoying the weather. I've made a page on his eye gaze about the zoo. I'm hoping he'll tell me what his favorite animal is. Probably not polar bears, haha.

I've been working diligently on the mountain of mail around here. Actually it's not really a mountain anymore, more like a small mound. I got up early Friday and worked on it a little over an hour. Threw out a buttload of stuff. Then my sweet mama came over and helped me do some filing. We cleaned out a bunch of Colby's old files to make room for new ones. She labeled the folders and kept me on task, never an easy chore. I'm fairly confident Colby's paperwork is caught up for now. I'll work on my stuff soon. Absolutely hate paperwork/mail with a passion.

Van update. It still isn't running well. You'll be driving along, then it will "sputter" then drive along fine again. Colby's nurse said she would describe it more as a "jump". Regardless, it ain't right!! No rhyme or reason to when it happens. It happens when I'm on the interstate and just driving around town. Dad came over to drive it and see what he thought. He drove the van out to Superior so they could look at the wheelchair lift, which also happens to be acting up on the van. Dad comes back and says the van didn't act up one time on the way out there or back. Are you freakin' kidding me?! I'm not crazy. Well, I am, but not about this. I know the van is acting up. The good news is the lift can be fixed for about $300. So we're going to fix the lift for now. Not sure what we're doing about the sputtering. Guess we'll see if it has just magically gone away.

Time to get that sweet boy of mine up for the day. His daddy will be here for his visit at 10:00. I'll get out and go for a long walk, trying to get back on the exercise kick. Also need to pick up a prescription and of course I need to go to Kroger, because for some reason, my life is not complete unless I go Krogering every other day or so. Bye for now.

JUST A LIL OLE UPDATE FROM LIL OLE ME

Glad to report a good week around here. Colby was off school Monday and Tuesday. Of course Tuesday was Election Day. Not really sure why he was off Monday also, but whatev. I woke up early, around 6:00, and started cleaning, cleaning, cleaning. Still had only half of my summer and winter clothes switched out, but that task is done now. Monday we had a nurse during the day. We gave him a haircut and bath. Colby had a bunch of supplies ordered. The apartment was really dirty, so it got a good scrubbing. Tuesday Colby and I took it easy, hung out around here. My mom came over and stayed with him so I could go vote. He's been doing great on his eye gaze. He's really exploring through the pages/options. He keeps saying things like "I could, could I" or something totally odd like "photo album". Hilarious. Then he'll go to the clothing page and say "jeans". One time I was in the kitchen and I heard him choose "bowling shoes". Really, Colby? WTH? Then one day he said "change me". Finally!! This is the kind of stuff I want Colby to say. What he needs, what he wants, etc. I kicked it into high gear. I said you want changed, by golly you'll get changed. He really wasn't that wet or dirty, but he said change me, so I changed him.  

Colby's numbers (oxygen saturation and heart rate) have been excellent the last couple days. I mean, like, kickass excellent. He's been able to stay off his vent for over an hour. Today he used his PMV for over an hour, and he's not a fan of that thing. He had an excellent day at school. I had to work. So nice not to get those Colby-is-having-trouble-breathing phone calls. He was due for a trach change today. I handled it with ease and precision, of course. Ain't nothing but a thing now.

Guess that's it for now on our end. Colby has school tomorrow, and I have some errands I need to run. Talked to the shelving system dude and not this weekend, but next weekend we're getting the shelving installed in Colby's room. There's a lot of work to be done in his room between now and then. Then as soon as that's done, the van shopping will start. Good thing, because the lift in the van is being extremely uncooperative lately. I think the hydraulics are going out in it again, and I'm just not paying to have it replaced. Time to replace the Terdmobile. Can't believe I'm saying that, but yeah, it's time.

NOTHING AND NOWHERE

That's exactly what I want to do and where I want to go tomorrow. Been sort of crazy and nutty around here for the last couple of weeks, so a lazy Friday is in order for us. Yesterday was Halloween of course. I wasn't thrilled with his costume choice, but I must admit Colby was right. He made an awesome zombie! Now, when you have an SMA child you can't just buy any old costume and think it'll work. Oh heck no, nothing is ever that easy here in SMAville. One-piece costumes are a no-go. Masks are usually a no-go. Bulky, heavy costumes are a no-go, etc. This year's getup was truly a joint effort. Colby said he wanted to be a zombie. His daddy got the costume. Colby's nurse and I did the zombie makeup. They had a big party at his school, complete with trick-or-treating at each of the classrooms. The staff really work hard to make it special for the kids. The office staff dressed as the Scooby-Doo gang, good stuff. When Colby got home from school, we did our normal routine, eat at 2:00, IPV and cough treatment at 3:00, then hit the road at 4:00. Went to Lexington and went trick-or-treating with Colby's friend Dani. Had a great time! Their neighbors were the best. So sweet to the kiddos and they were handing out regular-sized candy bars! And lots of them! None of those sissy fun size or bite size. I would call it another successful Halloween. I can't give my kid a big fancy bedroom with a ceiling track lift system and roll-in shower. But by golly I can give him FUN and give him some wonderful memories.

I was worried about Colby going to school today. Okay, I worry about him going to school every day, but today especially. He fell asleep on the ride home last night and I thought he was just going to be too darn tired to make it through his school day. No problems, he did just fine. When his nurse gets here we're going to give him a bath, then he's going to bed early whether he likes it or not. I'm super psyched because the CMA's are on tonight. Looking forward to watching.

Hey, guess what I'm doing? Laundry. Yeah baby, the washer is fixed. Tonight agenda is to put away the clean clothes I washed when I was over at my mom's. Yep, still haven't gotten around to that. Also going to do at least 1 more load of laundry. Today is the 1st day of the month, so that means changing out Colby's tubing, filters, etc on all his equipment. Before he left for school this morning I did the backup suction machine and cough assist. That leaves both Trilogy machines, humidifier, IPV, suction and cough assist in Colby's room. Dang, the nurse tonight is going to earn her pay! Speaking of laundry, it's spinning out and needs to be put in the dryer. One load down, one to go. Hope everyone had a safe and happy Halloween. FYI, Turkey Day is only 21 days from today. Holy freakin' crap where does the time go?!

I HAVEN'T POSTED SINCE LAST THURSDAY?!

What the heck is wrong with me? I could have sworn I've blogged since then. I meant to, guess I just didn't get to it. At the moment I'm waiting for my nails to dry, so I'll do an update. I painted them every other one orange and black, because yeah, I'm that nerdy.  

Today has been a good, gooder, goodest kind of day! Let me tell you why. First, Dad brought the washing machine back over, and it seems to be working. Score! He says he doesn't know exactly what he did to fix it or how long it will keep going. So we'll just keep using that thing until it burns up, blows up, implodes or disintegrates. It's all good. Just keep chuggin' along, little washer. I think you can. I think you can. Just another year or so, I know you've got it in you!

I hear Mr. Colby had a great day at school today. Always makes me smile from ear to ear. Hmmm, it's amazing how well he does on the days when they're not so academically focused and more arts and crafts/watch a Halloween movie focused in his class. I gave him 4 faces to choose from for his jack-o-lantern. I was too lazy to load them on his eye gaze, so I went old school and printed out the choices. Then I taped them on 4 corners of a plastic tote lid and had him choose. Hey, it worked. We've started pulling the final touches on his Halloween costume together. It's still missing a little somethin', somethin'. Just haven't figured out what it needs to be complete. I worked today so I could have Wednesday off to go to school with him for trick-or-treating. I didn't even ask him if I could go. Hope he doesn't mind.

I'm super excited to share my good news. The oncologist nurse called today and said my body scan showed, and I quote, "no evidence of residual or recurrent thyroid cancer". That made me happier than a cat covering shit, let me tell you. So I asked okay, now what? She said that's it, you're done  J  Just need to have regular follow-ups with my doctor to check my thyroid level.

There is a tiny bad tidbit to report. Suctioned some blood out of Colby's trach tonight. Don't ask me, I have no idea. Some things I love about that trach, some things I hate. What I hate is my ignorance and/or inexperience with trachs. So I'm not really sure if this will just pass? Or do I need to call Cincy ENT tomorrow and get him an appointment ASAP? Guess we'll see what the morning brings and take it from there.

Okay, it's after 11:00, my nails are dry, and I'm going to bed. To celebrate my non-cancerness, I got pizza and wings tonight. Not one of the most brilliant ideas I've had in a while. I think for a nightcap I shall have Extra Strength Tums, and a lot of them! Bye for now. 

MORE THAN HALFWAY THERE - TICK TOCK

Only 29.5 hours to go and I can get on home to that sweet, 1-front-tooth-missing, SpongeBob-loving, jabbering-up-a-storm son of mine. We're more than halfway done with this silly isolation stuff!

Colby's daddy stopped to see him yesterday on his way to work. How kind of him to fit that in his schedule. Then my dad went over and visited with Colby. His speech therapist also came over after work just to say hi and do a couple things with the eye gaze. Then the massage therapist came over and he got his monthly massage. I Skyped with Colby twice yesterday and also called him to tell him good night. So I'm hoping Colby isn't too lonely and missing his mama too much. Today my mom will go over and see him. Also he gets PT today, so that will help break up the monotony.

As for me, I don't have any visitors. Not yesterday, not today. Guess that's what they mean by isolation, huh? My mom and stepdad are staying in their RV right out in their driveway. And NO, I didn't chase them out of their own house. This is the way they suggested we do it. But on the upside, we have walkie-talkies! My mom wants to use them in case I needed to ask an important question like where to locate something in the house. I want to use them to goof off and say things like, breaker, breaker, good buddy, over and out. My mama is not amused! Yesterday I ran down to Meijer for a couple of things. Yes, I know I'm not really supposed to be around a lot of people. I wasn't. I went at 8:30 a.m. Walked in, grabbed my 3 items, went through the U-scan, got out. Don't judge me, haha. Went for a 3-mile walk up at Perrin Park. I've always loved that park. Used to go there all the time when I lived in Jeff back in the '90's. Last night I watched the World Series. Watched my boyfriend play a really good game with the Bucs. That would be Dallas Clark, for those of you who don't know me that well. Our relationship is such a secret he doesn't even know! Went through the mountain of mail. Yep, ALL of it. It's sorted into nice piles on my mom's living room floor at the moment. A to-do pile, a file-this pile and a do-this-ASAP-because-you're-horrible-about-opening-your-mail pile.

Today I slept in a little. No Meijer excursion for me today. Waiting on Colby's nurse to call me so I can Skype with my boy. Getting my full body scan today at 3:00. If nothing else, it'll be a good chance to catch a nap! I can go home tomorrow at 2:30. Believe it or not, I haven't cried one time, yet, but there's still a looooong way to go.

Okay, wrapping this up now. Going to try to get in my shower before Colby and his nurse call. Toodles.  

I'M SO LONESOME I COULD CRY

So here I sit at my mom and stepdad's computer, all by myself, in isolation for 72 hours. Actually it's only about 67.5 hours to go now, but who's counting? Went and took my 4 microcurie dose of iodine today, thus making me radioactive of sorts. Tomorrow is a do nothing day, just stay away from people and stay on the low iodine diet. And that's exactly what I plan on doing, nothing. Well, since our washer is on the fritz, I brought over our laundry to do. Also plan on getting up late, maybe work a puzzle, take a nap, read the book I just bought, and go to bed early. Friday afternoon I go for my full body scan so they can see if there are any other active thyroid cells in my body. And there WON'T be because I'm tired of this mess, actually just tired overall, and want it to be over.

Monday we took Colby for a well-check visit; Kentucky Passport is a stickler about these things. The doctor says, hmmmm, looks like Colby has an ear infection. Uh, excuse me, WTH, an ear infection?! So yep, Mr. ColbyBoy MRSAPants is on Bactrim again. I started freaking out just a smidge. All I could think was, no-no, Colby can't get sick while I'm not allowed to be around him, he just can't! Monday he had a low grade fever also. I find this all strange because for the most part he has had a great week at school. Well, there was some incident while he was in speech class today. Apparently his oxygen was low and they were having trouble getting him to stabilize, so she changed out his trach. But she was able to get on the bus with him and get him home safely, which is good, because when I was talking to her about this I was on my way to get radiated!

I hate being away from Colby like this. I don't know which SpongeBob movie he's watching. I don't know which pajamas he is wearing. I don't know if he needs/wants me there. But there's nothing I can do about it, so we're just going to suck it up and do it! I can go home Saturday afternoon at 2:30.

My sweet dad took the washer home with him. He thinks he has it working now. So I'll get that back over the weekend and give it a whirl. Get it, give it a whirl?! Because washers spin/whirl you know. My sweet mom and stepdad made me an iodine free roast with vegetables to eat while I'm here. I've already had 2 huge bowls of it. Good Lord, I can't imagine where I'd be or what I'd do without their help.

Okay, time to throw in some laundry and watch the World Series. Not that I really give a crap since the Reds aren't in it, but it'll give me something to do to pass the time. Only 67 hours and 5 minutes until I go home!

LOVE GIVING GOOD NEWS ABOUT GOOD TIMES

It's been a fantabulous weekend! Friday Colby and I hung out around home, no nurses during the day. My mom came over and helped me give Colby a bath, unpack some more stuff, etc. Dad came over and got my washing machine. Yeah, it has decided it's not really in the mood to spin out anymore. How super duper is that? Dad is working on taking it apart, trying to figure out what's wrong. Walgreen's Infusion came and drew labs because when Colby was discharged from the hospital, his calcium, potassium and phosphorous were all low. So we're going to have to keep a close eye on him for a few more days. You know, because we never monitor or watch him closely as it is, haha. His secretions have been crazy awful the last couple of days. I mean they are everywhere! We are constantly suctioning him and even giving him extra sets of CoughAssist because his trach sounds so gunky. Not sure if this is to be expected or not after the palmidronate infusions. I'm not losing my mind about it just yet.

I went to girls night out Friday. Did you hear me? I was able to go out with friends, do something social. There were 5 of us. Met for drinks, then went to the Haunted Hotel. OMGosh, I haven't been to one of those in probably 20 years, no exaggeration. It was a blast. No way was I going to be the leader through there. I was in the middle and was holding on to my gal pals for dear life! Honestly I think I peed myself a little when some of those creatures came jumping out. I was shouting out every 4-letter word known to man, and I think I even came up with a new few ones! Then we went to a bar for a couple of drinks. Luckily we were the only ones at this establishment, as some very horrible karaoke and pool playing ensued once we got there. Now I can officially say I've done karaoke! Amazing how much nerve you have after a couple of beers and you're surrounded by only friends and the bartenders!

I worked at the hospital yesterday. When I got home the nurse and I gave Colby a bath. Sat him up, let him use his eye gaze. He used to tell this joke all the time about a pencil. Now he has a new one: how does a deaf fish hear? With a herring aide!! Isn't that the cutest thing you've ever heard? He'll tell that joke, then he'll look at the bottom of his eye gaze and choose the buttons that say, "ha-ha-ha" and "that's funny". All the crap he deals with in life, and he still manages to have a sense of humor. You gotta love that kid, he is so awesomely awesome.

I'm going to a wedding tonight. One of my BFF's is getting hitched. Not that I'm a huge fan of the "M" word, but I'm very happy for her. She's been a typical stressed out bride to be lately, which is completely understandable. Looks like the weather will be perfect. I hope everything goes well. Please Lord, no silly snafus, and am looking forward to visiting/celebrating at the reception. Two social events in one weekend, what has gotten into me?!

CHANNELING MY INNER DOROTHY

There's no place like home! We got home from the hospital around 9:30 Wednesday night. I know my dad didn't want to drive us back home in the dark. But he probably wasn't in the mood to argue with me either on staying another night in Cincy, so we came home. Dad unpacked the van and I got Colby ready for bed. I did IPV and cough assist treatments, washed his face, brushed his teeth, did trach care, gave him his meds, changed his diaper and put on his pj's and hooked up his food all in about 45 minutes. Not bad, considering the IPV treatment alone takes 25 minutes. Just a little reminder of my mama superness.

Colby had a decent day yesterday. Not great. I think he's still feeling the effects of the palmidronate. Giving him Tylenol and Motrin in scheduled doses around the clock. He doesn't have a fever but his heart rate is higher than usual. His last set of labs at the hospital showed his calcium, potassium and phosphorus dropped after his infusion. This is normal and to be expected. The endocrinologist has bumped up his calcium to 3x what he usually gets. Walgreen's Infusion is coming out to draw labs again. Somehow I think Janice from Walgreen's Infusion and I are going to become buddy-buddies in the near future.

My mom is coming over today to help me get out my winter and put away my summer clothes. I hate this chore and need her hear to keep me focused. Squirrel!! Then the chick is coming to do Colby's labs. The nursing agency will be here at 4:00 to do the resumption of care paperwork. Anytime Colby is in the hospital overnight the nursing agency has to "discharge" him, then resume his care once we're back in town. Total pain in the ass paperwork is all it is.

We didn't have a nurse last night because I just didn't want one. I wanted to take care of Colby so I could keep a close eye on him. Not that we don't love our nurses, because we do. I'm very pleased with them. Wanted some time with just the boy and me. His nurse is coming tonight at 5:00, then mama has plans! Real plans that involve going out with adults! Can't wait. Can't get too wild though, have to work in the morning.

Okay, wrapping this up. I need more coffee, like, NOW. Colby needs his morning meds. Looks like our Friday is about to get going. Gotta make hay while the sun shines you know.

HELLO BLOG BUDDIES

Yes, I know I haven't blogged in a while. You'll just have to get over it. Been busy the last week, most of it good busy, although there's always some phone call to make or e-mail to send regarding something Colby needs. I have no major complaints, though (can you believe it?!).

Colby and I had a great weekend. I went to the Komen Race for a Cure. One word, WOW! The turnout they had was amazing. I was honored to go and support a friend of the family who has been undergoing breast cancer treatment over the last year. The weather was perfect, and although this was my first time doing this walk, it sure won't be my last.

Colby and I went to a surprise birthday party Saturday night for a good friend of mine who also happens to be my dad's girlfriend. We've become friends over the years, heck, we even invited her to join our Wine Night group, so you know she has to be pretty cool.

Sunday while Colby's daddy was doing his weekly visit with him, I went for a walk. Of course that was the only day last week I got some exercise, but something is better than nothing. Unless you're talking about an STD I suppose, haha. Also went to Burlington Coat Factory. I have been in the mood to update my wardrobe lately. This is the nice way of saying my fat ass doesn't fit in a lot of the clothes I have so it's time to buy new ones. Also watched the Colts stink up the field. Also went to Mass. Very thankful to have worked it out with nursing so I can start attending Mass again.

Colby had a great day at school Monday. He had a little incident when he first got to school, but then straightened up and was fine the rest of the day. I think riding in a vehicle really stirs up the secretions sometimes. I went to work, which proved to be uneventful (i.e. I didn't break any equipment). Monday after he got home from school we gave him a bath. The RT from Apria came to look at the IPV and ask if I have any questions or concerns about anything. I really didn't! Maybe things with this company are finally starting to straighten out. Colby had PT. Still working on finalizing the power chair but we're oh so close to getting it ordered.

Tuesday we came to Cincinnati Children's. Don't panic, it's a scheduled visit. Colby is having his first pamidronate infusion. This is done to help with his low bone density. We checked into the TCC yesterday about 2:00. They took labs. Give pre-meds of Tylenol and Benadryl. Bumped up his calcium intake as the pamidronate is known to make calcium levels drop. Then started the infusion. He did half last night. Then they did repeat labs to check levels. Colby is doing very well with the infusion so far. Quick, knock on wood, thank you. They started his second dose of the infusion today about noon. The med runs over 4 hours. Then they will monitor Colby for a bit, take more labs. And if he's feeling okay and his levels are okay, we'll get to go home later tonight. That would make me extremely happy. Might even have to break out into my "we're getting discharged" dance. You know how giddy I get when we talk about leaving the hospital.  

That's the latest with us. Better get back to the TCC and see how the sweet kid is doing. Yesterday when they gave him Benadryl it knocked him out. I'm thinking if he takes a nap with this dose of Benadryl, Mama should do the same, don't you agree?

MY DAILY RAMBLINGS

Back to reality, back to the blah-blah business around here. We got home from camping yesterday afternoon about 1:30. My dad was here to help me unpack the van, thank goodness. Gave Colby his IPV and cough treatment, fed him, unpacked some stuff. Then he had PT. We are oh so close to ordering his new power chair! Just a few more details and decisions to hash out, then get that puppy ordered. Night nurse got here at 4:00. She is super-duper fabulous. She just walks in and starts putting things away, talking to Colby, unpacking supplies, etc. Tomorrow is picture day at school, so the nurse and I did our best to trim Colby's hair up some. She was like, you're kidding right, we're giving him a haircut? It looks fine, considering, haha. Gave him a bath after that. Changed his bedding. I did 2 loads of laundry. She helped me fold and put it away. Got Colby ready for bed. And oh yeah, it was TCM so we changed out Colby's trach, too. Made sure all of Colby's equipment was charged and ready for school today. But other than that, we just sat around and twiddled our thumbs all night.

Got a call from Walgreen's Infusion. Apparently Audubon ran the wrong Vitamin D test on Colby's labs, so yep you guessed it, had to draw blood again today. I was so pissed, but what do you do? As far as I know, we're still on schedule to take Colby up to Cincy next week for pamidronate infusions. Oh goodie. Can't wait to get back there for 3 or 4 days. We miss it so (note the sarcasm). But I do want him to have an injection before his VEPTR surgery, which is scheduled for May.

Colby had school today and he had a great day. Makes me a happy mama! I was a little worried because we had been camping. Thought he might be really tired, or extra gunky, but he was fine. I did talk to his PT at school about rigging up some other piece of equipment for Colby so he can lie down when he's not having a good day so he can still participate in class. Take a stander and just keep him flat maybe? Hmmm, don't know for sure what the best answer is, we're working on it. The shelving unit dude came over and took final measurements for the shelving system we're having installed in Colby's room. Looking forward to better organizing/rearranging Colby's room. Finally getting something done and off that to-do list. Went over and signed my new lease today, booooo. Stuck in this dumpy apartment one more year. The new backup battery was delivered. Mom came over and brought a bunch of stuff we weren't able to bring home in the van. Started my low iodine diet today in preparation for taking the radioactive isotope and getting another body scan in a couple of weeks. Blah, blah.

Well crap, the Reds just lost! I didn't watch the first 2 postseason games, which they won. Then they played tonight at home and lost. Dammit! That tears it. I'm not watching the next game.

I have a hair appointment on Thursday night. Thinking of going dark brown for the winter. Just can't decide. I liked my hair when I had red, but it faded so quickly. There's a part of me that says it's stupid to color my hair. Very lucky that I don't have gray yet (yet, I'm sure it's right around the corner). So why spend the time and money? Just to do something different I suppose. Decisions, decisions. So thankful this is the hardest of my decisions for the week so far, know what I mean?

A-CAMPING WE WILL GO, A-CAMPING WE WILL GO

Colby and I had a great mini-vaca going camping with my mom and stepdad. We try to do it once a year, pending on Colby's school schedule, health and the weather. They were calling for nastiness, rain, colder temps, etc but overall the weather was cooperative. Last Thursday Colby had school. When he got home at 1:45, his nurse and I gave him a bath. Then did his IPV and cough treatment. Then we were out the door and on the road to Charlestown State Park. Got there about 5:00. Mom and Kenny had everything ready for us, of course. Mom borrowed a twin air mattress from a friend, so we sat that up on the picnic table to serve as Colby's "hangout" while we were outside. It was a quite a task figuring out how to get him in and out of the RV. There are 3 steps to get in the RV, then 3 more once you get in, plus the doorway is very narrow. We played around with a lot of ideas but found that wrapping Colby up in a heavy blanket and transferring him that way proved the easiest.

Our camping time consisted of doing a little of this, a little of that, and doing some nothing, too. Once we got him up and ready for the day, we took him outside and he stayed outside until it was bedtime. No way were we going to keep transferring his big butt in and out of that RV. We went for long walks. I took a bunch of books and read them to Colby. This kid loves, loves, loves to just sit by a campfire. He had the best time either sitting in his power chair or resting on his air mattress, being outside, visiting with grandma and grandpa. I loved making/eating approximately 114 s'mores. It started getting cold Saturday, but did that stop us, heck no. We bundled Colby up. He had on jeans, a t-shirt, back brace, my mom's sweatshirt, gloves, a toboggan, socks, his AFO's, another pair of socks over those, plus we threw a blanket over him. And outside we went! My stepbrother and his family came up for a visit, too. It was great to see them. I'm glad Colby got to spend some time with his cousins.

We weren't totally on vacation, in that I took Colby's AFO's and hand splints and made him wear them daily. Mean old mama. Also took his eye gaze. Of course he didn't want to use the camping page I made him so he could say what he wanted to do or liked best. Also made him a costume page so he could pick out his Halloween costume. Can't say he was all that interested in that, either. He was cracking me up, though. You remember how he used to say Yum! all the time? It drove me completely bonkers, since the kid doesn't get to taste/eat foods! I noticed over the weekend it seems he has switched from saying Yum! to looking at the button above it and saying Delicious! Nice, Colby. Well, at least he's not saying Yum! any more, huh?

The only boo-boo is that Colby's face is incredibly wind and/or sunburned. I feel awful about that. We put stuff on his face so it wouldn't get burned, but obviously it didn't work. The left side of his face is blistered it's so bad. Other than that, I would say the camping trip was a complete success. Looking forward to future camping trips with the sweetest, most thoughtful parents/grandparents ever. Time for bed. No matter what they say, that camping was hard work! But very, very worth the planning, money and effort spent for sweet Colby boy.

WILD, WEIRD, WACKY WEDNESDAY - WOA!

Want to hear about my crazy, ever-changing day? Sure you do! Here goes.

Started out like any other Wednesday. I got up and got me ready, got Colby up at 7:00 for school. Nurse got here at 8:00 to help finish getting him ready. Yes, it takes 2 hours to get Colby up and ready to go somewhere. Moving right along, bing bang boom, time to get Colby up in his power chair. It wouldn't come on. Just flat out wasn't working. This is the same thing that happened to it a couple weeks ago. So I had to send Colby to school in his manual wheelchair, and that's not cool. It's way too small for him, plus the mount for his eye gaze is on the power chair, not the manual. Too dang bad, it was either that or he didn't go to school.

Called Kevin the wheelchair dude on my way to work. He said he would stop by and look at the chair. Yay! I'm just praying his current power chair can hold out for another 6 to 8 months while we wait for the other one to get here. We HAVE to get his new chair ordered. They said they were meeting tomorrow to go over some of the specifics of the new chair. Let's just get it ordered people. Work with Mama here.

Got to work, my day was breezing along. Colby's nurse calls. Says Colby isn't having a "horrible" day but isn't having a "great" day either. Also said she couldn't get the backup battery to turn on, meaning she wouldn't be able to use the cough assist on the bus if Colby choked. Nope, can't have that. I had a couple things to finish at work, then I said I would pick them up. Got in a hurry, big mistake, and yep, you guessed it. Jacked up the overwrap machine again. AGAIN…OMG what is wrong with me?! Tried to change the bags out, it didn't work, they wouldn't feed through, I cussed a lot, the bags broke, I cussed some more, then just left it.

Got Colby home. We fed him, changed him. Got his equipment unpacked and charging for school tomorrow. Put Emla cream on his port. Nurse from Walgreen's Infusion came at 3:30 to draw labs. Colby has appointments October 16 thru 18 for pamidronate infusions. They wanted lab work first. The infusions are to help his low bone density (very common with non-weightbearing kiddos). School nurse leaves. Infusion nurse stays to get labs. Wheelchair dude fixed the power chair for now. Did I mention we need to get his new power chair ordered, like yesterday?! Nursing agency calls and says Colby's nurse for tonight just got done with dr appointment. She has a low fever, they started her on antibiotics, and what did I want her to do? WTH?! I want her to STAY AWAY FROM US, that's what. I would never let anyone come over here if I knew they were sick, especially with a fever. Geez, can't believe she even asked that. So we had no nurse tonight, and that was fine with me. No big deal. I let Colby play around on his eye gaze. He did great for 45 minutes, then said Spongebob 4 times, so I took that as my cue he was done lol.

Along with the excellent direction of Colby's speech therapist, I programmed Colby's Halloween costume choices on his eye gaze tonight. I told him he needed to be something scary, as he has always been something cutesy. So far his choices are Frankenstein, vampire, werewolf, zombie. Excited to see which one he picks. Also ordered a new backup battery. It was only a matter of time until this one started acting up, we've had it a long time. It was $319 plus shipping. Cha ching, fantastic.  

Colby and I are going camping this weekend with mom and Kenny. Supposed to leave tomorrow between 4:00/4:30. Don't have the first thing packed. Haven't been to the grocery. Don't have our laundry done, 1 load in the dryer, 1 in the washer, 1 waiting. I'll be a very busy mama when Colby is at school tomorrow.

Gotta get this kid in bed. Gotta do laundry. Gotta get these contacts out of my dry eyeballs. Later, taters.

NO CATCHY TITLE, JUST AN UPDATE

How is our week going you may be wondering? Pretty darn great. Colby had a good week at school, which in turn meant that I had a good week doing whatever the heck it is I do to fill my day. Two good weeks of school in a row, great job kiddo. Today Colby had a field trip. They took all the elementary classes from his school to a local movie theater to see Finding Nemo 3D. We had the whole theater to ourselves, probably about 25 to 30 students, plus teachers, aides, nurses and some parents. Trust me, quite the adventure. Colby did great. He sat up the whole time. I looked over at him during the movie. He just looked so darn cute. He had his 3D glasses on over his regular classes, his vent on, letting out the occasional jabber. Oxygen and heart rate steady as could be, the stinker. Don't think for one second I ever take days like this for granted, because I don't. We've been through way too many shitty days for me not to recognize a wonderful one when it's happening.  

Colby also got a massage today. He's getting massage therapy through Hosparus once a month. Then his night nurse and I gave him a bath. Totally relaxed after that he was. He was practically sleeping when the nurse was doing his nighttime routine.

I won't get into all the details, but sadly and officially we're not getting a house anytime soon. Just not meant to be right now, and I'm cool with it (not really). I've totally accepted the fact (it sucks terribly). However, now I can move forward, switch gears and get some other stuff done. Called the shelving company, and I'm going to go ahead and get the shelving system put in Colby's room. That will make a huge improvement in his room, giving us more storage, better arrangement, more room to maneuver Hoyer lift, wheelchair and bath chair around, etc. And I'm going to start looking for another van. Can't believe we'll be saying goodbye to the Turdmobile sometime in the near future, but it's time. I'm ready for some changes.

This chick is going to bed. Good night all. More tomorrow probably. 

BACK TO TCM AGAIN

Let me start by saying, my kid is a stud. He had a great day at school J Sooooo very happy for him. What are the chances he can go to school a full 2 weeks in a row? We'll see, I'm hopeful. Thursday he has a field trip. I've gone on several of them with Colby before, but I thought this time I would ask him if Mommy could go this time. You know, he's a big 10-year-old now and may not want his doting mama around when he's out with classmates. But he's a sweetie and said yes I could go. I even had his nurse and speech therapist ask him while he was at school. I'm in, lol!

Things I got done today while Colby was at school: made 8 phone calls and sent 3 e-mails. Went through a buttload of mail and various annoying paperwork. Also walked 3 miles and went to the grocery. Things I didn't get done: bathing, combing my hair or laundry. Actually getting ready to get a shower and hit the hay when I'm done blogging.

Yep, it was a Trach Change Monday. This time I let the nurse do it. She has changed out trachs before, just not Colby's trach, so we thought it would be good practice. We also took Colby outside for a while in the swing. It was perfect swinging weather. I don't think Colby's oxygen ever dropped below 99. He was loving it.

Tomorrow will be much of the same. Once I get Colby on the bus and off to school, there is still more mail to sort through and phone calls to make. Need to run some errands, too. Just the regular blah blah. And of course he's going to have a great day at school, so I won't have to worry about needing to go and pick him up. Right? Absol-freakin-lutely.