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.