JUST MINDING MY OWN BUSIN---SQUIRREL!!!!

Things are getting back to normal around here. Well, our normal, which of course is very different than a lot of people's normal. I have to remember that g-tubes, trachs and various pieces of respiratory equipment for an 11-year-old nonverbal child is not considered society's "normal." It just happens to be what we're used to, our perfectly normal lifestyle. Colby went to school both yesterday and today. He had decent days, not great, just decent. The mornings have been rough on him. Once he gets up in his wheelchair and rides the bus, which is pretty much a giant, yellow shaky vest, on top of having extra drainage from his head cold, the secretions are a bit much for him. He's having great afternoons, though, while at school. So I hate to keep him home if it's a matter of just coughing/clearing extra secretions. For the most part he's back to usual jabbering, cute-as-a-freaking-button self. I don't know. It's the never-ending parent dilemma, figuring out what is best for our kiddos. Doesn't it wear you out sometimes?!

I've been able to catch up on a few things around here. I worked over the weekend, so nothing much got done then except for the usual taking care of Colby stuff. I still need to go through the mountain of mail that has accumulated over the last couple of weeks. Of course that's the task I've saved/procrastinated, and now it's on my last nerve. Maybe if I have some time tonight I'll start on it. After the Biggest Loser premiere goes off, of course. Not missing that for anything! Love that show, have never missed an episode. Got out a few Halloween decorations today. More to go up as the week progresses. Only 15 days until Halloween, yippee Skippy! The one day of the year when it's okay to dress up and act like something/somebody you really aren't. Who doesn't love that? Time to carve pumpkins, make applely, cinnamony, pumpkiny, yummy treats, watch scary shows. Oh, and the weather is going to get cooler in the next day or so. Good stuff, love it, really I do! We have to get on the ball so Mr. Colby can pick out his costume. He's already said he wants to be something scary, not funny. I guess the days of being a duck, Elvis or a cowboy are over for him. I think he would make the best vampire ever. Last year I couldn't talk him into it, he was zeroed in on being a zombie. But let's face it, he did make the cutest/scariest, best damn zombie ever.

I was sitting here today at the computer doing something very important. Okay, not really, I was Facebooking probably. When out of the corner of my eye, it caught my attention. Had to do a double take. There is an albino squirrel that hangs around the apartment complex, and it was right outside on the wheelchair ramp. I've been dying to get a picture of that weird thing. And there is was, right there, and I missed it! Couldn't get to my camera fast enough. So there I was, tiptoeing around outside in my sock feet with my camera, looking for the white squirrel. He was long gone, though. I'll get him one day, don't you worry, the creepy little yard rat.

Going to wrap this up for now. I made stuffed peppers for supper. They smell pretty darn tasty, so I better go check them out. Girl gotta eat! Bye for now.

CAMPING TRIPS ROCK - HEAD COLDS BITE

Camping was great. Or at least I think it was. I mean, it was, but it had some moments. Mainly I had some moments. I was sick the entire time we were gone. Woke up Friday feeling yucky, and stayed yucky, and am still yucky a week later. Colby started getting sick Monday. Head colds, both of us. Yeah, I'm over this shit for real. Colby was supposed to have school Wed, Thur and Fri this week. I kept him home Wed, then sent him Thur. This was a mistake. His numbers were crappy while he was gone, and he even cried at school a little. He kept telling his teacher on his eye gaze, "I'm going to tell you how I feel. I am really sick." Then he was picking various body parts, saying they were bleeding or they ached. God love him. Kept him home today. Finally got a doctor to agree to an antibiotic, so we started that today. We've done IPV and CoughAssist treatments around the clock, every 4 to 6 hours, since Monday. He had hit and miss symptoms. He had a mild fever that came and went. One day his oxygen would be low. One day his heart rate would be high. One day his trach secretions would be thin, one day they were thick and yellow. Get the picture? It's been a mess. I've been hacking my head off, practically ODing on plop-plop-fizz-fizz Alka-Seltzer and cough drops, tired from getting up with Colby through the night. Worried about Colby. He has been sick, but a different kind of sick. Usually Colby is either perfectly fine, or sick in the hospital with pneumonia. There is no in-between with this kid, usually. So him being "just" sick with SMA and a cold has thrown me off a bit. But we survived the week somehow, and now I think we're both turning the corner and starting to feel better.

Back to camping. Overall it was fantastic. I loved the opportunity to get Colby out of the apartment for a few days and visit with the family. We had one day of sunny hot weather. A couple of days of rainy weather. One day of cold weather. Just as the saying goes: don't like the weather in southern Indiana? Just stick around, it'll change in 10 minutes. We went for a nice walk. Colby loves to just lie around and watch the campfire. I swear he is totally mesmerized by it. We were able to get in a cookout/picnic between the rain on Saturday with Mom, Kenny, their friends who were camping 2 spots down from us, and my stepbrother and his family. This is really what I wanted to do while camping, so I'm glad we got it in. Colby sat up in his chair and used his eye gaze to communicate with everyone. We did the hot dog/s'mores gig around the fire. We tried to sit around the fire and visit some more, but the rain set in again. We were trying to hurry and get Colby under cover, but his wheelchair got stuck in the wet ground and/or wet leaves. The tires were literally spinning, while I was "giving it gas" and the others were pushing him out. Nice, really nice. It was worth it, though. I loved every second of it. Sunday we stayed in the camper because the weather was for crap. Made Colby watch the Colts game with me. Then he watched Spongebob and I watched more football. We needed to be home Monday at 3:00ish because the wheelchair dude was coming to make some adjustments to Colby's chair. We got up and made a fire so my little pyromaniac could watch the flames. I had a couple s'mores for the road, then we headed home. By the end of the night, Colby's nose was pouring snot and his illness started.

So I think that about catches you up for now. In spite of me feeling like crap on a cracker and the weather not being all that cooperative, the camping trip was still fabulous. I don't know how many more camping trips we'll be able to have in the RV  L Colby is getting too dang big, and so hard for us to get him in and out of the motor home. We'll have to see what next Fall break brings us, I suppose. If there's any way to do it, we'll figure it out. We always do. Going to bed soon, then getting up at midnight for Colby's cough treatment. Have to get this kid well, ASAP. Too much school to be attended and Halloween festivities to do in the next couple of weeks. Now that I'm feeling better, I'll update a little more. I know you've all missed us terribly haha.

 

 

 

BITS OF PIECES OF OUR CRAZY LIVES LATELY

I'm going to make this short and sweet, because I'm tired and want to go to bed. I'm good. Colby is good. Bye.

Just kidding. I have a little more to report than that. I've been busy as crap lately. I said if I could just make it through September I'd be okay. And I did! With training for my new job, picking up a few extra hours at my old job, and working my first official weekend as the new "pharmacy counter technician" I've been a little cra-cra cuckoo. I worked 6 days in a row and took care of all things Colby, so yeah, pretty much running myself ragged. But now my schedule is back to normal, or a new normal I should say.

Colby is doing fabulous. He's had a great week at school. Today they went on a field trip to the zoo. Tomorrow is his last day of school for the week, then he's on Fall break until next Wednesday. I'm hoping now that my schedule has lightened up a little, I can get back to redecorating his room. That just got put on the back burner with everything else I had going on. I also want to get busy putting other/new stuff on his eye gaze. He's using the heck out of it, and I couldn't be more pleased. Time to kick it up a notch. And now for the really good Colby news…drum roll please…he drove his power chair FORWARD this week. Once in gym class, then again up and down the hall at school. Now that's news! It's wonderful that others are finally having expectations for him. That's what he needs, someone else to push him besides his mama.

We're going to spend Fall break camping with Mom and Kenny, and I can't wait. You know what I'm going to do while we're there. Nothing, as little as possible, relax. Visit. Spend QT with my sweet boy. Go for walks. Read The Hobbit to him. Make s'mores. Take naps. Visit some more. I'm not forwarding my home phone to my cell. I'm not taking my daytimer.  I'm not taking the mail to sort. Besides Colby's daily routine, we have no set schedule. I need a few days of R and R. And football. I want to watch lots and lots of football. Colby's nurse helped me get a bunch of stuff together tonight. It's all sitting here in front of the TV, waiting to get packed up tomorrow. It'll take me all day while Colby is at school to get us packed up and ready. Then he'll get home from school. We'll feed him, do a routine trach change. Do his IPV and CoughAssist treatment, and hit the road. Aaaaah, let the mini-vaca begin.

That's about it I guess. I know it's not much detail, but I'm tired and want/need to get in bed. I'll be blogging again soon to report how the camping adventure went. Good night, all. Remember to count your blessings.  

THE "F" WORD

No, not THAT "F" word, get your dang mind out of the gutter. These "F" words:

FOOTBALL - Anyone who knows me knows I get giddy when football season rolls around. Not many sports to watch during the summer - baseball, golf, tennis. Eh, no thanks. Give me touchdowns, helmets, the Colts (they won today by the way), and a TV remote and I'm good for a whole weekend.  

FALL - Happy Fall is Officially Here Day! Absolutely love this time of year, my favorite season by far. Goodbye hot, humid, sticky, nasty weather. Hello crisp, cool temperatures, sweatshirts, Halloween, bonfires (somebody needs to invite me to one just sayin), pumpkin and apple-flavored food and drinks. It all brings me much happiness.

FRIENDS AND FUN - My BFF and I packed up and headed to Lexington (about 80 miles away) yesterday for the Blake Shelton concert. Had an absolute blast. Met some friends for drinks and dinner before the show. They dropped us off at Rupp. It was an awesome concert, Blake put on a good show. Met up with some other friends after the show for more drinks. Got a taxi back to the hotel. Yep, that's right, I left Colby overnight again. Two times in 2.5 months, that's just crazy talk. It was so nice spending time with my bestie. Just the 2 of us, being our usual goofy selves. Ready to do it again soon!

FIVE - The number of days in a week Colby has gone to school the past 2 weeks. All 5 days, Colby you are so awesome. He had a really good week at school this past week. I never thought I'd see the day when he could go to school this much. There are some nights he's definitely tired, but not over-the-top tired/exhausted. Such a big boy. Very, very proud of him. Another F - FUNNY eye gaze story. They were in class one day, and one of Colby's classmates, well, no other way to say it, farted. The kid passed gas right in the middle of class time. Colby looked at his eye gaze and said, "really?" Is that not hilarious?! I said oh he did not, and his nurse said, yep, he certainly did. Never a dull moment in that classroom for sure.  

FORWARD - The direction I wanted Colby to drive his chair today.  As in okay Colby, you are to follow directions and drive straight ahead to the end of the parking lot. What Colby chose to do was right turns, left turns and playing with the recline and leg rest functions. He was told ahead of time, look Colby, you have a choice. Do what's asked of you, drive forward, plain and simple. If you make the choice not to do it, your punishment will be no Spongebob for the rest of the night. Thank goodness Colby's nurse is here because we're kind of making her out to be the bad guy. Colby had 20 or so chances to drive forward, he chose to do the other stuff. Hence, therefore, as a result, no Spongebob for you, little mister. Then on his eye gaze he said, "come, dad, dad, dad, Spongebob." I'm like oh heck no, Colby. There is no going to your daddy and getting out of this one. This is the decision you made, deal with the consequences. This child's stubbornness is wearing this mama out!  

Time for me to get to watching the football game. More in a few days when I get some time or something worth blogging about occurs, haha.

HAPPY DAYS LATELY

I have good news to share. Isn't that a relief?! You can read a nice, peaceful blog update from me for a change.

So I guess in some cases the squeaky wheel really does get the oil. Or in this case, the bitchy mom gets the supplies. After many unpleasant phone calls and stern voicemails, the trachs that I ordered for Colby on August 16th were delivered yesterday. Yep, a full month later. Oh Apria, how I love dealing with your constant screw-ups. But, we do have them in our possession and can use them for Colby's biweekly trach change tomorrow. My mom wants to do his trach change this time, just in case she would ever have to watch Colby in case all 5 nurses were unavailable. Hey, believe me, that has happened. Go Linda, you'll be fine!

There was a screw up getting the saline bullets for Colby's nebulizer and IPV treatments. Insurance didn't approve them, but Passport did, but not for the total number we need monthly. So I was having to buy the remainder out of pocket. Then it seemed like we were getting fewer and fewer paid for. Just a mess. So I called insurance and said yo, what's up, why are you not covering this expense? Stupid ass customer service rep proceeds to tell me sterile saline packaged in 3 mL individual capsules is an over-the-counter medication. What a moron. I simply said, I assure you they are not. I cannot walk into my local Kroger and buy these off the shelves. She continued to argue with me, which only pissed me off royally. I had not only the pulmonary nurse call her back, but also a pharmacist at Kroger to get the crap straight. The crap is now straight J Went to Kroger and picked up 450 saline bullets for the month ahead. Aaaaah, it's the little victories that bring me such joy.

And last but not least, we are now getting Colby's Mepilex Lite covered by insurance. This is a biggie. The stuff is major expensive and Colby uses the crap out of it. But of course it didn't come without several problems, too. Called insurance (you seeing a pattern of how I spend a great deal of my time?) and said hey, is this covered or not? Insurance customer service rep dude says yes, I say great. There was an issue on whether or not we would have to pay co-insurance on it. Another couple of phone calls. Was finally told yes, Mepilex Lite is covered by Colby's insurance, and no, we wouldn't owe anything. Good gravy, finally! Would you just ship the stuff already?! Oh, they sent a shipment…of regular Mepilex, not the Lite. Well shit the bed. Called again, said this isn't correct. They said they would ship out Mepilex Lite. Super duper. The next shipment we got was for Mepilex Lite Border, not just plain Mepilex Lite. I'm not making this crap up, I swear this is exactly what happened. So, 3rd time is a charm, we received a shipment of plain old Mepilex Lite a couple days ago. For the love of corn, how hard can it be?

I've had a great birthday today. Got lots of calls, cards and texts, which all made me smile. I'm surrounded by a lot of people who truly care about and love me. Good grief, what more could I possibly ever want/need? Okay, not going to lie, I bought some lottery tickets, because I want/need money, any form or any amount. Colby's nurse brought me a big birthday cupcake, and my boss at work got me some banana pudding. Went to Smokey Bones with my BFF Kim. Colby gave me a beautiful bracelet and a super big, cool coffee mug. Aaaaah, such a sweet boy. Got a mani/pedi from my dad, and my mom is getting me a much-needed pair of tennis shoes. Mine have had the lick. Oh yeah, and my stepdad took me to Red Lobster the other night for endless shrimp. Me, spoiled? Maybe just a tad. But I'm worth it, dangit.

I'm tired. So tired I'm not even going to stay up and watch Duck Dynasty. Off to bed I go. Must be on my toes for another day of training at the new job tomorrow.  

QUICK UPDATE, CUZ I NEED SLEEP

Why don't I just do blogs every day, or at least every other day? It's so much easier for me that way. I haven't blogged in over a week, so I'm sitting here thinking, what should I talk about? What should I talk about the most? What should I talk about the least? Do I start from last week and work my way forward, or update from today and work my way backward. Yes, this really IS how my brain works. As one of my BFFs put on Facebook a couple weeks ago: sometimes I feel more confused than a mood ring on a schizophrenic chameleon in a bag of Skittles. That cracks me up, it's so me! You know, our lives are so stinking exciting, there's sooooo much to discuss (sarcasm). So here comes an update, in no particular order, no rhyme or reason.

I survived new employee orientation last week. Barely, but I did. It was excruciatingly painful. Anyone who has been forced to go through these stupid things knows exactly what I'm talking about. Nobody, and I mean NOBODY, wants to play get-to-know-you bingo at 7:30 in the morning. But I did it, and now I'm an official employee of the hospital. The best way to summarize my new job is holy shit. Very fast paced, very detail oriented, a lot to learn, and on my feet all day. OMG what have I gotten myself into?

Took Colby to the Center for Courageous Kids camp this past weekend. We love this place. This was our 3rd time going. Honestly, we were this close to not going. Another lovely requirement with my new job was I had to have a Tdap booster shot, which made me feel extremely yucky for about 36 hours. Flu-like symptoms and very lethargic. I thought there is no way I can get this kid to camp. Plus my BFF Kim was going with us, as she has all the other times, and she had to work later than expected. But we rallied. Loaded up the van and headed to Scottsville, KY for camp. It's a major amount of work, but it was so worth it. On Saturday, Colby got to visit with friends. We went to arts and crafts where he made a Spongebob sponge character. How fitting for him, huh? Then we off to horseback riding. This was also Colby's 3rd time for that, but I'm telling you, it's nerve-wracking. He did great though. Then it was off to the lodge for lunch, then nap time. Any camp that has a built-in nap time is okie-dokie by me! After siesta Colby had his 1st fishing adventure. Look at the fish he/we caught! Then we went bowling. Headed back to the lodge for supper. They had a movie night afterward, but we were just to pooped to pop. We went to bed instead. Got up the next morning, had breakfast at the lodge. Colby played his 1st game of Yahtzee. Then we packed up and headed out, got home about 4:00. It was a busy, exhausting weekend, but it was AWESOME. Colby did so well. Can't wait for next year's camp to roll around.  

Okay, it's after 11:00 and I'm tired. Very tired. And 5:45 will be rolling around before I know it. G'nite, chaps, and toodles for now.

 

MONDAY'S MEMO

Going to try and do an update. Forgive me if I'm even more scatterbrained than usual. Actually even a good bit nervous at the moment. More about that later, though.

Our weekend was decent. Nothing earth shattering. I worked Saturday during the day. My brother, sis-in-law, nephew and niece were in town for my nephew's cross country meet, so they stopped by for a visit. This was a perfect opportunity for Colby to use his eye gaze. They had never seen him use it before. I was encouraging Colby to say conversation-appropriate things on the eye gaze - what's up, hi, how are you, etc. He didn't really do a lot of that, but he did use it, and that was just fine with me. All in good time, I'm convinced.

Sunday I had Colby all to myself. Aaaaaaah, peace and quiet, my FAVORITE times nowadays, Colby and Mama time. Colby's dad was out of town, so he wasn't here for his weekly 3-hour visit with Colby. I told the nursing agency, no need for a nurse either. He has been gunky as all get out lately. He's at the end of taking his antibiotic, so you would think he'd be all better. I came to the conclusion that it was time to start the Robinol back. Oh boy, here we go again. But I really didn't have a choice. He has been struggling to sit up without choking, and his secretions are everywhere. So I'm starting out a very small dosage, 0.5 mL 4x daily, and we'll see how it goes. Just can't find that balance between drying up Colby's oral secretions and not drying up Colby's trach secretions. The fun never ends around here.

Today I worked. Nothing like laboring on Labor Day I suppose. Then the night nurse and I gave Colby a bath. Can't have him stinky you know. Tomorrow I start a new adventure. Here's where the nervous part comes into play. I'm starting a new job at the hospital. Not giving up my part time pre-pack job. This is in addition. Super excited about it, yet super nervous at the same time. As long as Colby stays healthy enough, I'll be able to do it. All day tomorrow and Wednesday I have orientation. Yuck. I mean super yuck. I went through it 5 years ago when I was hired for the pre-pack technician job. It's super sucky. But I'm not looking at it that way. I'm going into this with a good attitude. First of all, I'm getting paid for going to orientation. Second of all, this is a very good step in the right direction to make a better life for Colby and me. Thirdly, I'm getting paid for going to orientation. I can do this! New adventure, here I come! Send some good luck vibes my way if you have time. I'll let you know how it goes.