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!   

MUCH OVERDUE UPDATE, COMING YOUR WAY RIGHT NOW

So why haven't I blogged in a really, really long time? Not sure, just haven't gotten around to it I suppose. Are you dying to hear what's new with us? Certainly you are, so I shan't keep you in suspense any longer.

The answer is, a little of something and a bit of nothing. I worked Mon-Fri this past week, which is unusual for me. Usually it's only 1 or 2 days a week. My boss, who in case you don't know is also my BFF, is on vaca. So I'm covering for her. I will love getting my paycheck next week, but I sure did miss my sweet boy when I was gone. And I'm happy to report that in 5 days I neither broke a packaging machine, nor did I leave there in tears. So take that, pre-pack room! Also working Mon and Tues of next week. Cha ching, gotta make that money-money.

Colby is enjoying his summer break, i.e. being a bit on the lazy side. We were supposed to take him to Build-A-Bear the other night, but the storms hit and we had to postpone the excursion. I do think he's a tad too old for BAB. However, they currently have Spongebob characters there, which he'll like of course. Plus we also have gift cards, so yeah, we're going sometime this summer. Swimming a couple weeks ago was a great success. Colby held in there for 30-35 minutes, then got tired. Hoping to take him again in the next couple of weeks. I need 2 helpers to go with us, 1 to make sure the suction and vent don't fall in the pool, and 1 to help me keep Colby's trach/stoma out of the water. So it takes a little coordinating, but it's totally doable and I can't wait to take him again. Colby also had pet therapy this past week. Three words - he loved it! Colby got to pet and hang out with this gianormous Lab-mix dog for about an hour. She was the sweetest dog, hence her name, Sugar. Her owner was really cool, too. We lowered Colby's bed and let Sugar get up in bed with him. Colby was whiny when they started to leave. I promised him we would ask Sugar to come back and visit. Of course we spent the next 15 minutes using a lint roller to get all the black dog hair off of Colby and his bedding. Totally worth it, though. Colby also got massage therapy yesterday, the lucky little booger. The massage therapist who sees Colby has told me several times she'll give me a massage, too. Seriously, why haven't I taken her up on that?!

We've only had Colby outside a few times in the last couple of weeks. The weather turned to hot/humid/nasty/miserable. In case you didn't know this about us, we don't do heat. Period. But in the few times we have been outside, power chair driving for Colby is a total bust. He just won't do it, AT ALL. I mean literally will sit in the parking lot for minutes at a time without activating the chair. He'll just watch the direction arrow go around and around. I guess the Great Wheelchair Crash of 2013 really shook him up? That's my only guess. It's so discouraging. We tried and tried to find the right driving system for Colby. Now we have one that works well, and he wants nothing to do with it currently. He won't drive for me, or his grandpa, or a nurse. I even tried to bribe him. I got out his Super Soaker water gun from last summer while we were outside last Sunday night and said hey Colby, if you practice driving your chair, you can play with your Super Soaker and get us wet. Zero. Crickets. Nothing. He wouldn't drive a yard, foot or even an inch. Somebody pass the vodka, please and thank you.

Friends of ours recently adopted 2 simply beautiful babies. They had a meet-and-greet open house today, and I couldn't wait to meet the little rascals. The nurse and I loaded up Colby, and drove to I-don't-know-where, some park on the other side of the city. Then it proceeded to rain, so we were scared to get Colby and all his equipment out. They brought the kiddos over to the van for a minute, so yes, the mission of meeting the kids was accomplished. Just wish Mother Nature had been a little more cooperative.

Guess that's it for now. Time for me to get up off my lazy buttocks and do an exercise DVD. I went walking the other night and I swear, about had a heat stroke before I was done. Stupid freakin' summer weather. Walked 3 miles and at about mile 2, I was like seriously, what was I thinking?! But today inside the AC will be much better. More blogging soon. Sooner than the last update, I promise.

COLBYRUSS CRASHPANTS AND DECISION MAKING

Miss a day, you miss a lot around here. Well, not always, but it has been interesting around here the last couple days.  

Colby's nurse is back there getting him up for the day. Yep, we finally got a day shift nurse to help us over the summer. Today is her 3rd day. Day 1, she just watched/shadowed me. Day 2, we slowly started letting her do more hands-on stuff with Colby. Day 3, I said I'll be in the living room, holler if you need me. Experience is the best teacher, I always say. Colby got his new glasses the other day. They are simply adorable on him. Check out pic below. The rest of day consist of speech therapy visit, and hopefully we'll take Colby swimming when his night shift nurse and my mom get here. Also trach change day. Ain't nothing but a thing now. Old trach out, new trach in, bing-bang-boom, it's done. That's how I roll.

So let me tell you what my sweet boy managed to do Tuesday. I had him outside for some power chair driving. He's been a little weird on driving lately. He'll just sit there and do nothing. And sit, and sit. Then spin to the left for a while. Stop. Drive backward for a few feet. Then sit and sit. You get the drift, not a lot of progress. So we were outside and I'm sitting there watching Colby, soaking up some sun, and I hear beeps coming from his chair. Okay, that means he's in the menu mode, where he usually plays with the elevator, leg rest, etc. Unbeknownst to me, somehow he managed to find the speed button. That beeping was him shifting from speed 1, where he normally drives, to speed 5, which is like freakin' turbo jet speed. Then he got out of the menu mode and started driving forward at warp speed. Before I could jump up and stop him, CRASH, right into the back of a Ford explorer out in the parking lot. And I do mean crash. He hit it hard. Hit it so hard as a matter of fact that he busted out the car's taillight. His head went flying forward. Holy crap on a cracker, it was awful!! I started looking him over from head to toe. I just knew I'd find a bone sticking out. But fortunately he wasn't hurt too bad. He had a little cut on his right hand that was bleeding for just a minute. His right hand is also bruised in a couple places. I know he has to be sore. Other than that, no major damage, thank God. So I took pics of the damage. Wrote a note to the owner of the Explorer and taped in on his car. Called the apartment office to let them know. Waiting to hear from the owner of the Ford, but haven't yet. So I must ask, how in the world did Colby manage to find the speed control, change the speed, exit out of that mode, then take off like a bat out of hell, when lately all he wants to do is spin in circles or sit there? I swear the incident took 7 or 8 years off my life for sure. I'm just so thankful he wasn't seriously hurt. Could have been really, really bad.

After much thinking, and praying, and some more thinking, and talking to the doctors at Cincinnati, I've decided to postpone Colby's VEPTR surgery until next spring. I just absolutely hated the idea of him missing out on the start of a new school year, transitioning from elementary to middle school, getting a new teacher, etc. The whole reason we stay in this stinky city is so Colby can attend this particular school. I talked to the ortho nurse this morning. She says to give her a call in November and we'll start looking at dates in 2014 for Colby's surgery. So, no more worrying about this crazy crap for a while. No more running up to Cincy for this test or that test. Time to kick back a little, find some fun stuff to do this summer, and enjoy being with my boy.

Okay, speech therapist is back there with Colby, I better go see what's up. More updates soon. 

  

SUMMER IS HERE - BRING IT ON

School's out! School's out! Colby's last day of elementary school was Wednesday. His nurse wasn't able to go with him on Monday, but he did get to go Tuesday and Wednesday to finish up the school year. And what a school year it has been! Remember the mouth bleeding incident on day 2 of the new school year? Then he had to miss a ton of school due to not having a one-on-one nurse. Then he was supposed to leave the school year early for surgery, but of course that didn't happen either. See, you just never know around here. We make plans, but as always, our plans don't go as planned. I'm getting rather used to it by now. My sweet boy is going to be in 6th grade next year!! Holy crap on a cracker, how is that even possible?!  

Everybody keeps asking us what we have planned for the summer. Well, that's a good question. Originally we were going to be recovering from VEPTR surgery. Now, not so much. I've been thinking of taking him on a couple short trips. Maybe to Indy, I hear the children's museum there is kickass. Maybe Gatlinburg to the aquarium there. Maybe to Build-a-Bear, as they have Spongebob characters there I think he would like. Trying to decide if he's too old for that or not. I do know we're taking him swimming again this week. Looking forward to that. Other than that, we're sorta winging it for now.

I called Cincinnati Hematology a few days ago to follow up with Colby's lab results. Seriously, you aren't going to believe this. They want to REDO the platelet aggregation study. WTF, you're kidding, this is a joke, right? Nope, she wasn't kidding. Apparently some of the vials clotted, along with his lipids were high. For the love of all that is good and holy, can't anything EVER go right for this kid? Actually we have 2 choices. #1 - redo the study, #2 - don't redo the study and they will treat Colby preventatively before surgery as if he does have a bleeding disorder. I hate both these options. Isn't there a curtain #3? I was livid by the end of this phone conversation. I said, you know, I'm tired of these foul-ups. I'm going to have to think long and hard on this one, I'll call you back next week. This whole mess makes me nauseous. Everything leading up to this surgery has been chaos. Let's move on, I can't even think about it right now.      

Mom came over a few days and helped me get Colby's winter/summer clothes switched out. Colby has grown so much over the past year. New shorts and short-sleeved shopping trip, here we come. Last night Dad, Colby and I went to the Moose for dinner. My BFF Pam came and joined us, too. I have the best parents. The absolute BEST, hands down. Where would I be without them? Up Poop Creek for sure.

Not sure what Colby and I are going to do the rest of the day. He's back there getting his IPV treatment right now. I'll admit it, I've been lazy in setting up the eye gaze lately. So we need to do that for sure. If the rain stays away, maybe take him outside for some driving, which of course involves him spinning in circles and driving in reverse. The nurse gets here at 5:00 and I'll go to work then. What a way to spend a Saturday night, alone in a tiny office, in the back of the pharmacy in the basement, packing pills. Not to mention it stays about 20 degrees back there. Oh well, I guarantee I've had worse Saturday nights, just sayin'. Have a great weekend, blog readers.