LOOK OUT 6TH GRADE, HERE COMES COLBYRUSS BIGBOYPANTS

We took it easy over the weekend. I worked this past Saturday. Then the day nurse got off at 5PM and we didn't have a night nurse. Time alone with Colby, aaaaaah I love it. Well, let me specify. I love alone/no-nurse time with Colby when it is known/planned, not when some dumbass nurse calls off at the last minute. That just infuriates me. Sunday morning Colby's dad came for his weekly 3-hour visit. I ran errands. Then when the night nurse came, we got Colby outside so he could help us transplant some the sunflower, lily and gardenia plants Colby and the nurse had planted several weeks ago. That was the highlight of our Saturday night. Ain't no shame in that.

Yesterday we went to the walking bridge. I had been wanting to take Colby all summer, so since it was the day before school started, it was now or never. Thank goodness there is a breeze going across that bridge because it was hotter than crap yesterday. We even went early, home by noon. Damn Ohio Valley humidity, it's horrible. Took Colby and the nurse home, then I ran some errands. Apparently they don't make plain black dress shorts for boys anymore? I can find tons of gym shorts, but I'm looking for something a little dressier. I've been to 6 different stores with no luck. The night nurse and I gave Colby a bath in preparation for the first day of school, which was today!

I had worked myself into an absolute frenzy about the start of school. I mean seriously, I have made myself sick. ALL I want is for Colby to have a good 1st week of school. That's it, all I want. And by "good" I mean I want him to stay out of the hospital! Remember when last school year started, and they called me and said, ummm yeah, Colby has some strange bleeding from his mouth. We ended up taking him to Cincinnati Children's that night, and a 6-day hospital stay resulted. That was ridiculous. The year before that, the first few days of school he caught a virus, got sick, and ended up in Cincy for 39 days! That was extremely ridiculous. So yeah, I hope you can understand my elevated nervousness for him as school starts. I've done some heavy praying the last few days. I know God has way bigger prayers to answer than this, but I was praying/begging, please, please let Colby have a good 1st week of school. Just let us get Tues, Wed, and Thurs under our belt without any major complications, please, please. Day 1 was a great success! The bus showed up on time. We loaded up Colby and the nurse on the bus, I followed in the van to school. I stayed the whole day. Just wanted to meet his new teacher, see his daily schedule, make sure the nurse was comfortable with the whole bus/school thing, etc. The only little snafu we had was the lift on the bus got a little whacked when they came to pick him up at school this afternoon. This also happened last year, so I wasn't panicking. Took an extra 10-15 minutes to solve the problem, then we were heading home. So day 1 of 6th grade for Colby was a huge success. More of the same tomorrow. I want to hang out just a little more in case the nurse or teacher has any questions/problems. Then after that, I think everything will be fine for Colby and the nurse to go to school without me.

Colby is back there in his room. I can hear him being whiney. My guess is he's tired. I asked him that, Colby are you tired yes or no. Of course he looked at no. Then I said Colby, do you want to go to bed earlier tonight, yes or no. Of course he said no. Well, tough crap, kiddo. You're getting lights out at 9:00 tonight instead of 9:30. Because let me tell you, 6:50AM rolls around pretty darn early on school days. Hope I can blog in a couple days and add smiley faces, LOLs and exclamation points for all the right reasons. That's all for now. "And that's the way it is," peeps.  

 

 

MIDDLE OF AUGUST?? I THINK MY BRAIN IS STILL IN JUNE AND/OR JULY

So here we are, 4 days before school starts. I know for a lot of people you're like WTH, we've been back to school for days/weeks. Colby's school district is getting a very late start compared to others locally. But I'll admit it, I'm not ready. He's ready in the sense that he has new school clothes. We cut his hair this week, faux hawk, ah yeah baby. Cleaned out his backpack, making sure we have the proper supplies, etc. Colby will have a new nurse going to school with him this year. She's the same day nurse we've had for a few weeks now. She'll do great. Those sorts of things are lined up. I'm not ready meaning I personally am not ready to send him off to school. I want him to stay home with me for just a little longer. Just give me one more week with him at home before he enters the big 6th grade. Guess it doesn't work that way, huh? Back to school time, whether I like it or not. I will miss my sweet boy when he's not around.

We've done a couple fun things over the last week or two. Yesterday we went to the Vietnam War Traveling Memorial Wall. I didn't know if Colby would like it or not, but he hung in there. I'm glad we took him. Last weekend we took him to the planetarium on U of L's campus. He really enjoyed it. They had this 45-minute cartoon show explaining all the planets. Colby liked it and actually paid attention. Did you know Earth is considered a "rocky midget" planet? Who knew? Also took Colby to the zoo one day. We got him up very early and hit the zoo before the stinking heat and humidity set in. We were home and resting on the couch by 12:30. The orangutans and penguins were our favorites for the day.

Took Colby for his 6th grade checkup and immunization appointment. Let me repeat, Colby is going into the 6th freakin' grade. Every time I think about it, I just shake my head in disbelief. Truly unbelievable. We knew they would want to measure him, so the nurse and I did it before we left. Colby is 56 inches long. Yes, you read correctly, 56 inches. That's 4'8". Holy growth spurt Batman! And you don't even want to know how much weight he has put on in the last few months. He's quite the bubba boy. So we had his nutritionist come over and tweak his formula recipe a bit. We're cutting back 70 calories a day on Colby. We don't want him to lose weight necessarily, but certainly don't want him gaining any more either. I need to join him in the calorie cutting, just sayin', haha.

Had to let another nurse go. Either I fired him, or he quit, not sure. But regardless, another one bites the dust. I absolutely hate going to Colby and saying, hey Buddy, I'm sorry, but such-and-such won't be here anymore to help take care of you. I assure Colby every time that it's NOT his fault, and there's nothing he's done wrong. So the nursing agency is in search of yet someone else for us. Someone dependable who actually shows up for his/her shifts would be nice.

Okay, there's a quick update. I didn't realize it had been so long since I've blogged. After the yard sale, I worked on getting my elliptical into storage. Now using that space as a "parking lot" for Colby's power chair and Tumbleform chair. Next project, redecorating Colby's room. It's been on the "to do" list since we had the shelving installed last November. Hey, don't judge me, we've been busy. It'll be a bit of a hodgepodge. One wall will have U of L decals on it. Another wall SpongeBob, of course. Can't totally get away from it you know. Another wall will be covered by a big wall mural of the planets. Like I said, no specific theme here. But these are Colby's interests right now, and as long as we can put something up besides that goofy square dude who lives under the sea, it can be a little scattered as far as I'm concerned. I'll keep you updated on the room's progress as it comes along. Later, dudes.   

ONLY 39 HOURS AND COUNTING DOWN FOR THE WORLD'S BEST YARD SALE (not really, but we're going to try)

I doubt if I'll have time to update over the weekend. Got the big yard sale going on you know. So I'll go ahead and do a little blogging while I have some time.

Monday Colby's day nurse and I took him to the movies. We saw Despicable Me 2. I think Colby liked it. He didn't cry or fuss at all, but man, he was loud. Very LOUD during the whole movie. He seemed happy enough, guess he just needed to make some noise. Luckily there were only about a dozen other people in the theater.

Tuesday my dad came over to work on the ramp outside the apartment. We have a ramp, then Dad covered it with wide plywood boards and painted them with non-skid paint. Those boards have lasted about 3 years I think, but they were starting to look worn and nasty. Okay, well let me back up. This was Dad's 2nd attempt to fix the ramp. First time he couldn't get all the screws out. They were either stripped or just not budging. So this time he brought some sort of saw and cut the boards, then pulled out the screws, etc. He comes inside and says the one thing he didn't want to happen happened. The underneath boards at the end of the ramp were looking bad/rotted. So first we had to replace those 8 boards. Major bummer. Then he comes in a little later and says the 2nd thing he didn't want to happen happened. His drill was running low on charge. Okay, so he was going to be able to work just a little while longer. Then he comes in and says the 3rd thing he didn't want to happen happened. I'm cracking up at this point, God love him. He says, "I pulled a Spongebob." I asked what in the world he meant by that. Then he says, "I ripped my pants!" Sure enough, he had a split in the back of his britches. Anyone who follows Spongebob knows there is an entire episode where Spongebob is on the beach and repeatedly rips his pants to get people to think he's funny. You know you've watched too much Spongebob when you can somehow tie in an episode and/or quote to your everyday life! I laughed so hard at him, couldn't help it. Guess you had to be there, but it was hysterical.

The nurse and I have been practicing using the Hoyer lift to transfer Colby. Okay, we only used it once, but hey, we DID in fact use it. That thing is a major pain in the fanny. Especially when you have deep carpet and rugs like we do. The last couple of days we've been like, screw it, it's 10x faster and easier to lift and transfer him.

Today we took Colby to his pediatrician here in town for his 6th grade physical and immunization update. I was worried it would be a disaster. His regular pediatrician is down in his back, so other doctors have been seeing his patients over the last couple of weeks. I assumed they would be backed up and way behind. I also assumed the doctor seeing him would be a total doo-doo head when it came to Colby and his diagnosis. I'm glad to admit I was wrong about both. Somehow we managed to get there 15 minutes early. They took us straight back to an exam room, and the doctor was super nice to Colby. Actually, everyone was super nice to us. Couldn't have asked for a better experience. Colby had to get 2 shots, which he was not happy about at all! He cried quite a little bit. Oh my, can't stand to see my sweet boy cry. But once we got him home in his comfy bed and yep, you guessed it, put on some Spongebob, he's doing just fine now.

I think I can say we are officially ready for our big yard sale on Saturday. My mom and stepdad's garage is almost filled to the brim with all kind of junk, I mean treasures, for people to come purchase. I think I still have a few items to price. But the signs are made. We have the change drawer made up. Went and got tables last night for setup. Only thing we need now is NO RAIN. Pleeeeeeease, rain gods, give us a break on Saturday. You can pour, storm and rain like crazy all you want, AFTER about 4PM. Colby and I are going over tomorrow night and also staying Saturday night. No way will I feel like packing him up and coming home after dealing with a yard sale all day.

That wraps it up for now. Will let you know how the yard sale goes when I have time. Once again, I am begging, pleading, praying for no rain! I had to make a lot of arrangements and have worked very hard to have this stinkin' thing. It better happen or else I may just have a small meltdown. Or a large one. I think I'm about due. 

SUMMER IS TRUCKING RIGHT ALONG IT SEEMS

Wow oh wow, busy week. So get your eyeballs ready as I do a recap:

We had Colby's birthday party on his actual birthday, which was Monday the 22nd. Let me take a moment to say how incredibly proud I am of my sweet boy. He's cute, sweet and stubborn at the same time, funny, tough and all-around amazing!! I'm so blessed to be his mama. We toned it down big time this year. Had it at a local Dairy Queen, and invited just family and closest friends. We showed up, visited with everyone for a bit, sang Happy Birthday, ate cupcakes and ice cream cake, went home. Short and sweet. Colby got so many compliments on how healthy, good and handsome he looked. Seriously I was just bursting with pride. Love that crazy kid to pieces.

Tuesday we sat Colby up in his new Tumbleform chair (that thing is ginormous) and he opened his birthday gifts and cards. He got lots of cool presents and cash. Cash is good. Always the right size and always much-needed around here. We're going to use it to get Colby new school clothes and redecorate his room. No seriously, going to redecorate his room. I've only been talking about it since we put up his shelving last November. Hey, don't judge me, we get busy around here. I met up with one of my SMA mommy friends for dinner. I drive down from Louisville and she drives up from Lexington, meeting in the middle. Always super fun seeing her. We just get each other, of course, dealing with the maze of issues that comes with raising an SMA child.

Wednesday I worked. Nothing to report there, didn't break a machine, just packed and overwrapped some pills and came home. Wednesday night I met 2 friends from Henryville for supper. We know each other from waaaaaay back, and it had been much too long since we had seen each other. We talked and laughed, then talked and laughed some more. Great seeing them and getting caught up on our lives. So I spent very little time with Colby the whole day. Bad mama! Hey, no use having 16 hours of nursing a day and staying home and the dang time, right?

Thursday during the day I wanted to take Colby to the movies. But he needed post-infusion labs drawn, and of course the chick wanted to come at 12:30 to draw them. Right in the middle of the freakin' day. Thursday night I worked on training a new nurse. Seems like if we have 5 nurses, we're able to fill most of the shifts for Colby. One M-F day nurse. One nurse who picks up every other Saturday so I can work. Then 3 evening nurses who cover the 7 shifts in a week's time. And guess who does all this scheduling? Yep, that would be me. The scheduling dude at the nursing agency has a tendency to jack up Colby's schedule. Again, it's just easier if I do it myself. Not an easy task sometimes. There's my work schedule. Colby's school and appointment schedule. Then you have to know the nurses' availability. I work very hard to keep our nursing duckies in a row. That's why I get so pissed when a nurse quits. You have to find a nurse who has great skills and personality, along with fitting in the schedule around here.

I've been working on getting my yard sale stuff together. Yard sale, yard sale, yard sale. Finding items, cleaning up items, pricing items, boxing up items, taking items to Mom's. Whose dumbass idea was it to have this stupid yard sale?! Oh yeah, mine. Time to suck it up and get 'er done. If I had another month to get ready I still probably would say at that time, just need a few more days and I'll be ready. So I'll get as ready as I can and hopefully sell some crap, I mean treasures, next weekend.

Colby is having a great (i.e. healthy) summer. Once this ding-dang yard sale is over, I have a list of things I want to do with him before school starts. When he opened his bday presents, he got new pj's from Grandma and Grandpa Kenny. On his eye gaze later that day, he said clothing, pajamas, pajamas. Cute, huh? So we put his new pajamas on him immediately. You ask for it, you get it, son. He still won't drive his power chair. He'll sit out in that parking lot for half an hour at a time without doing anything. I could scream. Worked for years to find him a driving system that works, and now since the great Explorer crash of June, he won't do it. I swear, good thing he's cute.

Time to make Colby's food and hey guess what, I'm going to work on pricing some yard sale items. I'll update again when we have something to report. Toodles.  

HAPPY 11TH BIRTHDAY TO YOU, COLBY
  

WE BE SLEEPY - GOSH, I CAN'T IMAGINE WHY

Wednesday was one of those weird, kind of crazy but I can't explain why kind of days. I usually work on Wednesdays. We didn't have a day nurse, which meant I went into work at 6P once the night nurse got here. I've been making phone calls to try to finally get Colby's new CoughAssist machine. Ordered it through a company here in town. Very nice people, the kind of business where a real person still answers the phone. They have the machine, we're just waiting on the battery. We've been waiting and waiting on the stupid, crappin' battery. Apparently it's on backorder from the manufacturer. Well dammit. I want that new machine for Colby so bad I can't stand it. But here we sit, waiting, waiting and waiting some more. Oh don't worry, I'll be calling again Tuesday or Wednesday next week to check the status. Hoping my squeaky wheel gets oiled. Hosparus called and wanted to know if they could do a home visit, that same day. Oh sure. I can take care of Colby by myself, get ready for work, pack for a Cincinnati trip and do a home nursing visit all at the same time. No freakin' problem.

Up at 5:30 Thursday morning to get us ready to go to Cincinnati. Colby was scheduled to have his 3rd infusion to help correct his low bone density. They told us to be there between 10 and 11, which is exactly what we did. Rolled into Admissions at precisely 10:50. Then we waited. And waited some more to find out whether or not Colby's room was ready in the TCC. Actually overall the time in Cincy went well. Colby got his infusion and did well with it. The first 2 infusions he received earlier this year were pamidronate. This drug is typically given 4 times a year. This time they gave him zoledronic acid, which is only given twice a year. We'll have to keep a close eye on Colby for a couple of days for flu-like side effects, but so far he's done fine. There are some really great people who work on that unit. A couple of real ding-dings, too, but overall we dealt with more winners than losers this visit. I just did a lot of Colby's care myself. It's easier that way instead of explaining it to someone else, watching them to make sure they do it right, etc. Around 3:30 this morning Colby woke up needing a cough treatment. I did the whole thing, IPV, CoughAssist and tons and tons of suctioning. I thought oh great, here we go, he's getting sick. But now I'm thinking it was a freak thing. Could also be that I discontinued his Robinol a couple days ago due to Colby having thick trach secretions. He had a DEXA scan this morning. Then we got a consult from wound care regarding the never-ending, never completely healed sore on Colby's left ear. They gave us a couple of options to try. We were out the door at 1:00 and home by 3:00. No traffic, no choking incidents in the van. All in all, I would call this particular Cincinnati adventure a success.

But boy are we butt-dragging tired. Up at 5:00 one morning and at 3:30 the next morning is just not our cup of tea. Not to mention the stress of the whole going to Cincinnati thing. Colby took an hour nap, but I worked on unpacking and catching up around here until the night nurse arrived. She's back there getting him ready for bed. We're hitting the sack early tonight for sure. Still looks like a pigsty around here, but ask me if I care. I'll work on it some more tomorrow. That's the scoop for us the last couple of days. We really know how to have fun around here, huh?

HOT WEATHER MAKES ME GRUMPY, AND SLEEPY, AND FUZZY-BRAINED

Having a case of the fuzzy brain today. Can't seem to get my act together. You know, the kind of day where you walk in a room and completely spazz out on why the entered the room in the first place. Or you're right in the middle of a sentence/story and completely lose your train of thought. Yep, it's starting out to be one of those days. But I'll do my best to blog an update.

We've had some nursing changes around here lately. Does that shock you? I mean really, come on, what would our lives be without constantly-changing nurse drama? Remember when I took my 52-hour vacation? Well we were on the boat that Friday, coming in for the day, and Colby's nurse calls me. Of course I answered the phone, because she was with Colby at the time. Long story short, she took a position with another nursing agency making more money. Yeah, I get it, you have to go where the money is. I was slightly irritated because she had only worked for us about 4 weeks. I like her, she's a sweet gal. I first congratulate her on her new job, then ask, so this is your 2-week notice? Nope, this was her zero notice. She started her new job on Monday. Oh fantastic. Then I was highly irritated. But what can you do? The nursing agency has since sent a new day nurse, and we really like her, too. She's very attentive to Colby and catches on quickly. I absolutely despise training new nurses and losing nurses that have been with us a while. The nurse who quit is still going to work every other Saturday here, so when I work at the hospital having nursing coverage should work out. We'll see I suppose.  

You know what else I despise? Gnats. For some reason we had a problem with them the last couple of weeks. I have no idea where they came from. The dishes are done every day. The trash is taken out every day. There is no fruit or food sitting out on the counters, and sure as hell no one is sending me flowers these days. But regardless, we had gnats. Tried the home remedy of placing dish soap and vinegar out for them, caught 3. Eventually had to call the apartment office and they came over and sprayed. Viola, gno more gnats J 

You know what else I despise? Yard sales. Seriously, why would you want to ride around all day and look/purchase other people's junk? Especially my junk, it's really junky, haha. More specifically, I hate having a yard sale. But am I just stupid enough to do it, you bet your bippie I am. My mom and stepdad are kind enough to let me have it at their place. They have a nice big garage, driveway and yard. I've been working on un-cluttering around here. Trying to price items as I go along. Wow, I can only hope that this for shit, hot, hazy, humid, miserable weather is still around come yard sale time. Can't think of a better way to spend a day than out in the heat, sweat pouring down my back while someone tries to convince me to take 50 cents for a $1.00 item. Bring it on. Yep, it's official, I'm nuttier than a fruitcake.

You know what I love to freaking pieces? Colby Michael. Who, by the way, just happens to be turning 11 in 6 days. Eleven years old, my-my, how time does fly. What an AMAZING young man he is. He also has an amazingly stubborn, grumpy attitude lately. He has been quite defiant. He has perfected the craft of eye rolling and grouchy face making. I don't care, though. I still love him to pieces and we are enjoying our summer together. Cutting way back on the birthday party this year. Doing a very small family party, not the normal throw down shindig at the Moose. Also going to take him somewhere. Haven't figured out where or when, but somewhere doing something before school starts on August 20.

Okay, think I'll make another cup of coffee and see if I can clear the cobwebs from my brain. More soon, if I don't stroke out from heat stroke first.

HERE COMES THE RAIN AGAIN, AND AGAIN, AND AGAIN

So guess what I did. Go ahead, guess. Give up? Okay, I'll tell you. I went out of town. WITHOUT Colby. By myself, sans sweet boy, for a whole 52 hours. And it wasn't even under doctor's orders.

I've been thinking for quite a while now that I needed to do something without Colby. A little somethin-somethin just for me. Not that I don't adore him, and not that I don't want to take him places. But it's been a long time, years actually, since it's been just me, myself and I going somewhere. So I was telling my BFF this several weeks ago. She pipes up and says, okay then, go with us to the lake on July 4th! "Us" being her and her family, as they have a lake house at Lake Cumberland. So after some thought, and many scheduling arrangements later, I did it. I picked Kim up after she got off work on Wednesday, and we headed out to Russell County. And the adventure began…

I must say I had lots of fun, even though it rained the whole time. Oh wait, it didn't just rain, it poured, and poured, and poured. All day Thursday on the 4th. All day. From the time we got up until the time we went to bed. It rained, no wait, it poured. But never fear, fun was still to be had! We had pancakes for breakfast. Lounged around the lake house. Played some 500 Rummy. Kim won, but she cheated. Kim, her sister and I headed out into town. Our first stop was the Mighty Dollar. Holy crap, this place is the best! Everything was a dollar. Just a dollar I say, and the store was huge.  Amazing what stuff, I mean treasures, you find you have to have when it's only a dollar. I spent a whole $7 there. Then we went to Kroger, because somehow my life just isn't complete without multiple Krogering trips on a weekly basis. Went back to camp, hung out, had supper. We got a little stir crazy, so we loaded up in the truck and headed into town so I could see the sights. We drove by a small waterfall, which we renamed Hershey Falls, since the water was flowing so quickly and it was muddy. Drove through the cemetery so they could show me a really cool headstone with a motorcycle on it. I'm not making this stuff up. We were determined to get me on a boat, somehow, someway. So we drove to the marina and took the water taxi over to the store, where we got ice cream. Does that officially count as "boating"?! Went back to the cabin. Played Scrabble. Then the whole family cheated at that nonsense game. They have the patience to sit, exam the board, make a 50-point, double word, triple letter using a J or Z word. I have the patience to make words that total 9 points. I still came in second, despite their goofy rules.

Friday we finally got on the boat! Yippee! It cleared up enough, sort of, to hit the lake. Right when we were putting the boat in the water a freakin' downpour came along. It was bad, yet sort of hilarious at the same time. They showed me all the sights, the dam, 76 Falls. Then we had to haul ass back because the rain was coming in again. Actually we got caught in it again when we were on the lake. A tankini and rain poncho, now that's a stylish look. I loved every second of it, though. Boating is very relaxing if you ask me, in spite of Mother Nature being a total bee-otch during my mini-vaca.

Once we got back to the cabin, it was time for me to head home L Sadness. I didn't want to leave, really, but I did want to get home to my sweet boy. Got home Friday night about 8:30. If I didn't know better, I'd say Colby actually missed me. I missed him like crazy. But I'm glad I went, and had a great time with those crazy peeps. Heck, I fit right in with those goofballs!