WE'RE ON BREAK NOW

Or at least that's how it feels. Today is the 1st day over Christmas break that Colby doesn't have an appointment, no company is coming over, I don't have to work, etc. My only goal for today is to get the fridge and freezer cleaned out. If it has frost, slime or fur on it, it's gotta go!

Had Christmas with the family yesterday. I made spaghetti and meatballs, which were as delicious as always I might add. Also had salad, garlic bread and get this for dessert, brownies topped with peppermint ice cream, topped with Hershey's syrup. Oh yeah, that wasn't tasty at all. Just wanted to lick the bowl clean! Let Colby taste the spaghetti sauce and also the dessert. I think he was digging the ice cream as much as I was. Colby got some pj's, which he really needs, and some IU t-shirts. I got Isotoner gloves. Love them. Cloth gloves suck when you're trying to do stuff with Colby. Also got a soft, fuzzy sweat suit that I'm already wearing this morning.

This apartment is trashed. Colby still has 3 gifts sitting over here he needs to open. I have clean laundry that needs to be put away, dirty laundry that needs to be done, tons of gifts that need to be put away (have to find room 1st, therein lies the challenge.) Wrapping paper, Colby's supplies, unopened mail, you name it, it's out of place around here. Oh well, I'm sure a lot of your homes are like that. Right?

Colby is back there doing his shaky vest. We're lazy this morning. Feels good. More later.

NANNY-NANNY-BOO-BOO

I know something you don't know. More about that in a minute. First, here's a Colby health/Christmas update:

Dr. Mama says Colby is all better (smiley face.) Started him on Augmentin and gave him the around the clock "sick SMA kid" protocol for 4 days and viola, much better, thank goodness. I think if I had waited 1 more day he would have ended up in the hospital. Tomorrow will be his 1st time getting out of the house in over a week, but as we mamas say, "It was for his own good!" I'm still throwing in an extra cough or shaky vest treatment every now and then. But no more green snotty things in his throat or nose. So thankful my sweet boy wasn't sick over the holidays. That would have sucked too much for words.

Worked at the hospital Friday. Then our super-fine babysitter and her mom came over to exchange gifts. They got Colby a Spongebob ornament, piggy bank, pillow, 3 pairs of pants and 5 shirts. Yep, really cutting back this year I see. He's going to wear one of the new outfits tomorrow. I'm sure he'll look especially handsome.

Saturday Judy and I met for drinks. Everyone should start out Christmas Eve with a couple of stiff drinks. Trust me, makes the day go by much smoother lol. Traditionally we go to Buckhead's, but since it burned a few weeks ago and isn't open, chose the Bristol instead. Excellent choice, they have kickass Bloody Marys. Something to keep in mind for next year. The rest of the day Colby and I just hung. Made him watch "It's a Wonderful Life" with me. He wasn't overly impressed. Of course I cried at the end like I always do. The meaning of that movie hits the nail right on the head. Let Colby sleep with me in Mama's big bed. We cuddled up like crazy. He must have been comfy, because on Christmas Day at 9:15 that stinker was still asleep! I don't think he would have gotten up then except I was in his ear saying, "Merry Christmas, Colby. Hey Colby, it's Christmas. Colby Michael, want to get up now for Christmas?" Sat him up for a while and hooked up his eye gaze. Here's what he said: I-I-I-I-turn-on-more-more-more-more-more-more-please-please-I-please-to-like-more-Spongebob-please. Next he went straight to the remote/TV page, turned on the TV and put it on Nickelodeon. Priceless, truly priceless. Is my kid a genius or what?! Had a friend over and we made homemade pizza. Not exactly traditional Christmas grub, but it was delicious. Maybe we'll just start a new tradition.

Worked at the hospital today. After I got home, Colby's aide came and we gave him a bath. Then I helped Colby open the presents his daddy dropped off for him. We're still Christmasing around here. Tomorrow we'll exchange gifts with my dad, his girlfriend, and my brother and his family. I just finished up my spaghetti and meatballs to take. I've been making that for years when we get together. The others are responsible for salad, bread and dessert. After we get home tomorrow evening, guess what Colby and I are doing? NOTHING. Not a damn thing. Not cooking, baking, wrapping, cleaning, decorating, socializing, nothing. Doing the same nothingness on Wednesday morning. Looking forward to it.

So here's my secret. Remember the magazine that our friend is starting? The one where the 1st edition of the magazine will be available January 1 and will feature an article on Colby and SMA? Well, we were lucky enough to get a sneak peek!!! Maggie brought over the magazine and asked me what I thought. What do I think!?! It's wonderful. Excellent. Love it. She did a fantastic job and the pics are so awesome. Can't wait for everyone to see the article on Colby!!! So be looking for THIS…is Louisville out there, you'll see some familiar faces! So excited!!! As you can tell by my overuse of exclamation marks!!!

I keep saying I'll put more pics on my blog, and I will. It's on my to-do list. But for now, gotta get Colby in bed. Then still need to take out the trash, get the van packed for tomorrow and of course paint my nails. Can't have crappy looking nails during the holidays. TTYL, everyone.

FORGET TIRED, EXHAUSTED IS MORE LIKE IT

First of all, Colby is feeling much better, yay! Started him on antibiotics Monday and have been very aggressive with extra cough treatments, shaky vest treatments, running humidifiers, etc. It seems to be doing the trick. His heart rate is lower. Secretions are thinner and not so green (yeah I know, gross.) I can't even imagine how pissed and sad I would be if Colby was in the hospital on Christmas.

Here's what it took to get Colby's antibiotic: At 8:15 a.m., called Cincy, left message for nurse. She called back, said pulmonologist would start Colby on antibiotics. Excellent. Called Walgreen's 2 hours later, they didn't have prescription ready. Called 3 hours after that, they still didn't have Colby's prescription. Hmmm. So I called Cincy, left another message for nurse. She called back, accidentally sent the prescription to the wrong pharmacy. Okie dokie then. She called prescription into correct Walgreens down here. Now we're cooking with gas. Walgreens called, they did not have the medicine, did I want them to order it for the next day or find another Walgreens that had it. Please find it I said. Walgreens called back, transferred prescription to another Walgreens. Weeee. Phone rings. It's a recorded message from Walgreens saying Colby's prescription has been delayed due to insurance issues. Oh hell no! So I called Walgreens and said hey, what up, what can I do to help, etc. Just get Colby's medicine, and no way I'm paying $40 for something when it should be $0. The pharmacist called Medicaid, then called me back. Prescription was paid for and filled, ready to go. So I called the ex and he picked it up. Can you believe that crap?! That's the way it is around here all the time. Nothing is ever easy. EVER. Monday Colby also had PT. Then the wheelchair dude, Dennis, came and did some adjusting to Colby's power chair. Took about 2.5 hours! We all decided Colby just needs to quit growing and that would make things easier on everyone.

Tuesday Colby had his quarterly nutrition visit. He now weighs 65.5 lbs and is 54.5 inches tall. Wow, what a whopper he is. But his BMI is just above the 25th percentile and if you look at Colby, he looks very healthy, not overly chunky at all. Tuesday night I went out to dinner (Tumbleweed) with a couple of my girlie friends and the nurse stayed with Colbster.

Wednesday I worked at the hospital. Didn't tear up anything, didn't spill anything, didn't get pissed even 1 time. Wow, an early Christmas miracle. I was supposed to go out with a friend for pedis that night, but I just couldn't do it. The Tumbleweed was doing a number on my stomach, plus I had been up with Colby for 3 nights giving extra cough treatments. Not a lot of sleep. Colby and I were in our pj's by 3:00. We did nothing the rest of the night except laundry and watch National Lapoon's Christmas. "I want to look him straight in the eye and I want to tell him what a cheap, lying, no-good, rotten, four-flushing, low-life, snake-licking, dirt-eating, inbred, overstuffed, ignorant, blood-sucking, dog-kissing, brainless, dickless, hopeless, heartless, fat-ass, bug-eyed, stiff-legged, spotty-lipped, worm-headed sack of monkey shit he is! Hallelujah! Holy shit! Where's the Tylenol?" Makes me snort out loud laughing every time.

Today our friend Amber came over for a visit. Colby worked on his eye gaze. Bath aide came over. Colby got a hair cut and bath. I had him choose between straight buzz cut or faux hawk, he chose faux hawk. Actually we did a pretty darn good job on it. Then tonight the nurse stayed with Colby again and I did some running around and hanging out with a friend.

So on top of all this extra care for Colby and getting last minute Christmas stuff ready, I've been cooking and baking like Betty Crocker on crack. Today alone I made no-bake cookies, a big-ass cheese ball and banana nut bread. I mean seriously, who does that? It's my new thing I guess.

Time to give Colby his midnight cough treatment, then off to bed. Then up at 6:00 to get ready to work at hospital tomorrow. I have many things to be thankful for, mostly of all, Colby is feeling better. I really would have lost my flippin' mind if he ended up in the hospital this week. Also thankful I've scaled down this year with all the holiday stuff. I'm actually enjoying this Christmas season instead of freaking out. G'nite everyone.

TOO TIRED TO COME UP WITH A CATCHY TITLE

After Colby's behavior the last couple of days, along with the buckets of snot in his throat and nose, Dr. Mama is officially diagnosing him with a head cold. Fan-damn-tastic. That means Colby is officially on lockdown, not going anywhere for a few days, and we have started the "sick SMA kid protocol." Giving extra neb treatments and bi-pap time, cough treatments around the clock every 3 hours even through the night, and lots and lots of TLC. Going to call Cincy in the morning and see if we can get a prescription called in. Also got out the humidifiers and I have both of them running full blast. All of this makes me officially pissed. We don't have time for this! Even though Colby doesn't have school this week, we have a lot of other stuff planned. So we have to nip this nastiness in the bud before it gets any worse.

Okay, that's the bad news. Good news is to the best of my knowledge, my Christmas shopping is done. Finished. Finito. Completed. I went out yesterday and was on a mission. I had a list in one hand, an ink pen in the other, and a don't get in my way glare in my eyes. My 1st stop was the liquor store. Can't go wrong there. Next stop, K-Mart. Not just any K-Mart, the most horrible, dirty, ghetto K-Mart in the world. But like I said, I just wanted to get done so I went, it's the closest store. Surprisingly enough, my experience there wasn't bad at all. The cashier checking me out was as slow as cold molasses and she had a speech impediment, but other than that I was able to get a lot accomplished. Last stop was Kroger. I bought 10 blocks of cream cheese, yep, 10. There will be some serious cheesecake and cheese ball making around here this week.

Want to hear the cutest story? If you look under our tree, the only gifts you will find wrapped and ready to go are the ones Colby bought when they had the Santa shop at his school before break. One of the aides in his class took him shopping and let him pick out gifts for everyone. Then they wrapped them, sent them home and they're sitting under our tree. Hilarious. These little bags that read to Mom, from Colby; to Grandpa, from Colby, etc. It just looks so cute.

I didn't get near the stuff I wanted to get done around here today, but that happens when you have a sick kid, SMA or not. Priorities get switched. Naps get taken. Football games get watched (did you see the Colts FINALLY won a game this season?!) We'll tackle it all again tomorrow and see how Mr. Colby does.

Time for bed. Have to get up in 1.5 hours for Colby's cough treatment. I'll leave you with this final thought: just what exactly is Who Hash anyways? What is in that can, or do I even want to know? I picture it to be much like Spam. What do you think?

BLOGGING ROCKS

There's no other way to say it. Colby had a giant snot ball hanging in the back of his throat this morning. You SMA parents know exactly what I'm talking about. I was suctioning Colby and thump, there it was. I could hear it and feel it as I was suctioning him. I thought uh-oh, here we go. Sure enough, Colby's oxygen started to drop. This was after giving him 3 sets of his cough treatment already. Over the years it has been my experience that sometimes the easiest way to clear Colby is just to beat it out of him. So that's what I did. I picked up that giant 4'2", 65-pound kid of mine and slung him over my shoulder, then did some manual CPT on his back. It was the best thing for Colby, but me not so much. I know better than to do that, he's too dang big. But when your kid is choking you're going to do whatever it takes to help him/her, right? Luckily his oxygen "only" dropped to 76. After the CPT, I gave him an extra cough treatment and the plug dislodged. Exciting mornings, gotta love 'em.

Other than that, our day has been just fine. Colby was tired all day so I didn't push much with him. No eye gaze, no sitting up, didn't think he would have tolerated either too much. I tried to sleep in this morning but it didn't happen. Colby's feeding pump went off about 7:15, had to get up and turn that off. Got back in bed. Then 15 or so minutes after that Colby started whining. Went to check on him; he needed to be changed. Did that, stretched him out, started some cartoons, went back to bed. Then I heard 2 or 3 cars out in the parking lot. So I thought well crap, I'm getting up now I suppose.

Dad is coming over in the morning to watch Colby for a couple hours so I can get my Christmas shopping done. After tomorrow, stick a fork in me, done, not going out again. I've ordered a lot of my gifts online. That's the only way to go if you ask me! A few bucks shipping is more than worth my time, gas, energy, patience, sanity, fighting for a parking spot, etc. I'm not thrilled about getting out in the shopping madness tomorrow. Just have to tell myself get it done. Get in, shop, mark items off the list, and go home. Actually, I had to put myself in timeout today. I promised myself if I started getting worked up over all the crap that goes along with the holidays, that I would check myself before I wrecked myself as they say. Colby was back in his room taking his bi-pap break. I came out to the living room and just sat my butt on the couch for a bit. You ever do that, sit in silence, or at least in the quiet? Turned off the TV and the radio. Closed my eyes, took a couple deep breaths, found new focus, letting all the "noise" of Christmas go and remembering what is important. Within probably 3 or 4 minutes I felt better, had a smile on my face. That relaxation stuff really works.

Like I said yesterday, things are getting better around here, thank goodness. Seems we've gone from a sucky September and awful October to a nifty November and delightful December. Smiley faces on that for sure.

Going to bed. Today I'm thankful for this blog. It's a great way for me to communicate with everyone, along with allowing me an outlet to vent, sort out my thoughts, etc. Glad I decided to start doing this. And yes, I know, I need to get more pictures on here. It's on my "to do" list. Soon, very soon.

HOW BIG DO YOU LIKE YOUR BALLS?

Personally I like a 2-bite Oreo ball and a 3-bite snickerdoodle. I'm pretty much a ball expert by now. I've been up to my elbows in "balls" this week making Christmas goodies for friends. So far I've made 2 batches of Oreo balls, snickerdoodles, peanut butter fudge, Chex mix and some other candy I don't even know the name of with Rice Krispies, mini marshmallows, Spanish peanuts and almond bark. Still want to make some no bake cookies. Oh and maybe some more fudge and this other stuff I don't know the name of either with Rice Chex, M&Ms, peanuts, pretzels and almond bark. I'm in absolute Betty Crocker heaven making treats for everyone; I love baking at Christmastime. Took 1 tray to Colby's school and another to the peeps at my old job. Anybody else have any goodie requests? You ask for it, you'll probably get it!

Let's break down the week. Yes, I know I haven't blogged in a few days. I've been freakin' busy dangit. It's the holidays you know. Monday I baked and baked and baked. Also went and saw the endocrinologist. Not much to report. He's sending me to a radiologist to discuss this stupid radioactive iodine treatment I'm going to have. That appointment isn't until January, so probably won't have the iodine crap done until February. Yeah yeah, whatev. Tuesday while Colby was at school I should have gone Christmas shopping. Went to lunch with a great friend instead. Wednesday worked at the hospital. While I didn't break any ribbons or machines, I did manage to spill 99 out of 100 pills out of a bottle onto the floor. That's a new one. Wednesday night had a nurse for a few hours. Should have gone Christmas shopping but took another friend out to dinner for her b-day (see a pattern here?) Went to school with Colby today. The bus picked us up at school this afternoon to come home and it was all I could do not to break out in a happy dance. Colby is now officially on Christmas break! For the next 18 days, no waking Colby up at 7:15 to get him ready for school. No putting him on the bus in the stupid fucking rain. Over break he'll still have PT and visits from the bath aide. Also the nutritionist will come for her quarterly appointment with Colby. But we also plan to spend lots of time together just goofing off - watching Christmas movies, working on eye gaze, visiting with family and friends, etc. Looking very forward to this break.

Colby has had a great week at school. Wednesday his class went on a field trip to the mall to see Santa. Yep, I didn't go because I went to work. It killed me not to go, but of course he was in good hands. They took lots of pics, which I will post soon. Sounds like he had a great time. He was driving his power chair around the mall. He picked out a new hat (looks like a fish, it's soooo incredibly cute.) He got to eat Cinnabon icing. Nice to see others spoil him as much as I do!

Tonight "Aunt Kimmie" and I took Colby to the hospice Christmas party. We've gone I think 3 out of the last 4 years. It's a wonderful, special time. Santa was there and I swear to you, this dude was the real deal. I've never seen a better Santa. We all loved him. He was so good with the kids and he had the best smile and a twinkle in his eye. I hear when Colby's class saw Santa at the mall, he was a bit on the grouchy side, so I was glad to hear he has since then gotten a new attitude, haha. Colby got his face painted (pics soon.) Also got a balloon animal (turtle), an ornament made with Santa and of course presents! He got a keyboard/case for his iPad (what every 9-year-old needs), new pj's, a bath towel and some new t-shirts. Wow, how did Santa know that's exactly what Colby needed?! Colby was exhausted by the time we got home. He's had a busy week but it was so worth it. A lot of people work on that hospice party to make it nice for the kiddos and it shows.

I'm thankful for many things this week - time with friends, spreading Christmas joy via sweets, the ability to think for myself and Colby's wonderful, fantastic caregivers. Most of all I'm so very thankful for Colby's health. For the 1st time since August, I feel like things will be okay around here. Or at least okay for now. He's had a busy but wonderful week. I can't find the words to describe how thankful I am that he's doing so well. It means everything to me to be able to watch him go to school, take him out to events, etc. Looking forward to spending Christmas break with him. Life is good around the Russ household (for now) and trust me, I NEVER take a good, "uneventful" day around here for granted. Thankful, so thankful, for my sweet boy and every single minute I have to spend with him. Let's face it, my kid is awesomely awesome!!

I COULD GET USED TO THIS

Another great day. Colby's daddy came to visit with him and I went to Wal-Mart (why did I go there on the weekend?!) and also went Krogering. Was happier than a cat covering shit when I saw Kroger had Chex cereal on sale. Yeah baby. Scooped up on 4 boxes. It's not Christmas around here until Mama whips out some Chex mix, plain and simple. Still have 0 gifts bought. Don't even have my list made out yet. Do I care? Eh, not really. We spent time with great friends this weekend and loved every minute of it. And if you ask me, that's what the holidays are for. Not walking around a hot, overcrowded mall buying gifts for people who don't need or want for anything in the first place. I love everything about Christmas except for the shopping. I'm determined not to get stressy and give in to the commercialism of Christmas this year. So far, so good. TIME is all I want from my friends and family. Let's just be together, eat, drink and be merry, have a chuckle or 2.

After I got home, put Colby up in his chair and got the eye gaze going. His little eyes were just dancing around everywhere. I loved watching him. That's all I ask, that he TRY, put some effort into it. Of course he went to the remote page and tried to turn on the TV. Currently he can't because the eye gaze is set up to turn on a different TV. Then he went back a couple screens and said, in this order, "please, work" then tried the remote control page again. I swear that's exactly how it happened. Hilarious! He's such a sweetie. Wasn't too interested in the science page today. He kept choosing "play", then it would go to his games page and instead of picking a game, he would just choose "that". I never was really able to figure out what he wanted to play. Overall he tried really hard and did an awesome job with eye gaze today, and I'm thankful I got to see it.

Why do things have to be so complicated sometimes? While at Kroger I decided I wanted some eggnog, because you know, 'tis the season to see how many calories you can intake in a day's time. I swear there were 2 shelves and a dozen choices of eggnog. What the hell? When I was a kid you bought either eggnog or boiled custard. Remember that? Now it's regular eggnog, low fat, cinnamon, pumpkin, etc. Guess what they were out of, uh-huh, regular, plain-flavored eggnog. If it ain't broke…

I'm getting good feedback from this "I'm thankful for something every day" thing I've got going on. Some people are sharing what they're thankful for, some people are just saying they're doing it. I think it's great either way. I'm beginning to think maybe thanksgiving is a habit that we can all form with a little time. You get up and brush your teeth every morning, or at least I hope you do. Maybe we can all wake up and think of 1 or more thing(s) we're thankful for. It's made a huge difference in my attitude lately. Even on crappy days seems like I can find 1 little thing to give thanks for, making the hours and days that follow not quite so crappy. I'm not trying to blow sunshine up anyone's butt, just saying seems like if you try, you can find something, somebody, somewhere that makes you smile or brings you joy. I prefer to stay focused on that over the BS that just brings you down and you probably can't change anyways.

Off to bed. Lots to do this week. Baking and delivering Christmas goodies. Having lunch with a friend. Working at hospital. Biggest Loser finale to watch. Taking Colby to Hospice party. Hopefully having dinner with another friend. And who knows, might even get that Christmas list started. Nighty night everyone. Have a good week. Don't let the holidays stress you out. Not worth it. Enjoy every minute you can with friends and family, go to a church service, etc. Give the holiday season meaning and make some special memories, hear me?

CHECK OUT MY HOT DATE

He's tall, handsome, a snappy dresser and a blast to be around. Okay, he needs a little dental work, but other than that he's near perfect. No other dude I'd rather spend a Saturday night with than my sweet Colby boy. We packed up and went to a Christmas program at my BFF's church up in Indiana. Again, Colby did awesomely awesome. He's getting some major church time this weekend. Tis the season to get Jesused up! The program was great. The kiddos were up front singing and playing their little hand bells. Then they had various Christmas skits and other singing, very nice. You can tell a lot of time went into it. So glad we got to go this year.

And yep, just gotta say it, HOW ABOUT THEM HOOSIERS?! So proud of my IU boys for knocking off the #1 ranked team. It's been a long time coming for the Hoosiers to have a decent season. Maybe this will be the year. Loves me some Jordan Hulls! I know in the big scheme of things, it's just a stupid game. But hey, we Hoosiers eat, sleep and breathe basketball. Can't help it, baby, we were born this way. We missed the game because we were at the program but went to Amy's afterward to watch it because she had recorded it. Yes, Amy and Amy have been best friends for years. In high school we were inseparable, people just said "hey Amys" and we both would turn and look. They ALWAYS got a kick out of that.

Well it's way past my bedtime. SNL just went off. Man that show is just not what it used to be. But let's face it, none of us are. More later. Toodles.

FLIPPING FABULOUS FRIDAY

Today was a super-duper, fantastic day for both Colby and me. What more can you ask for?! Lunch was delicious if I do say so myself. Roast always hits the spot and my gravy freakin' rocked. I'd like to thank my Aunt Terry for teaching me how to make gravy a few years ago. Mine was horrible before she showed me. I mean like, inedible, the dogs wouldn't eat it, either too thick, too lumpy, tasted like flour. There were many bad gravy experiments before I learned the trick to making it. Now I'm most thankful for my gravy-making skills.

Colby was kicking butt on his eye gaze today. He was intentional. He was motivated, trying really hard. He was cracking me up and making me so proud at the same time. He keeps going to this science page. He's done it every time I've worked with him on the eye gaze recently. Today he was choosing sun, planets, space shuttle, sun, Earth, stars, sun. Just kept doing it. So obviously planet/solar system toys are on his list to Santa. We're going to have to take this kid to a planetarium sometime soon. He got a constellation toy for his room for his birthday. We put it together and can't get the darn thing to work. Dangit, need to get that out and get it fixed. Leave it to me. If there's some way to jack up something on a toy or electronics, I'll find it.

They had an Advent service at the Cathedral and I thought what the heck, let's take Colby. It didn't start until 7:30 so I thought we were just asking for trouble, that he would get tired and/or bored before it was over. Nope, he did fantastic! "Aunt Kimmie" went with us, along with one of her friends. Colby's oxygen never dropped below 95. Hope that's a warm up with how the weekend will be because we're going to a Christmas play tomorrow night. Crossing my fingers, hoping he does as well then, too.

I wouldn't trade days like this for anything. Did some housework. Spent some quality time with Colby. Got to visit with great friends. And yeah, I took a 45-minute nap and make no apologies for it. I was tired, plain and simple. Not exactly my style, but just felt right at the time lol. No headache or dizziness today, though, and I'm very thankful for that.

This is a pic of one of my most prized possessions, a wreath that Colby made that back in 2005, along with the help of his preschool teacher at the time. I absolutely love this wreath. We also have ornaments on the tree that Colby has made, but there's just something about those little green and red handprints that melt my heart.

Time for bed. More later. Nite-nite.

GOTTA PRACTICE WHAT I PREACH

The bottom line is I've had a "for shit" kind of week. Yep, I'm in a majorly pissy mood so this is a whiny blog entry. So sorry, but here's why:

Colby had a rough couple of days at school on Monday and Tuesday, and of course that upset me. SMA bites. Watching him struggle to breathe is just too much to handle sometimes. My heart drops each time I get a call or text from his nurse while they're at school. Yesterday and today were better for him, yay. I went to school with him today and loved every second of it. I try to be more of a nurse/caregiver and less of a mommy on these days, but he's just so darn cute, it's all I can not to ooo and ahhh and kiss all over his sweet face.

I've been having bad headaches and dizziness this week. This bites also. I can't help but think it's thyroid related. I have my 1st appointment with the endocrinologist next week. I'm sure they'll test my levels, or at least they better, because I think my medication needs to be adjusted. I've been doing a little research and wow, it appears your thyroid (or lack of) affects many aspects of your body/health. Fantastic.

So even though it hasn't been the best of times the last few days, I need to stick with my promise and state what I've been thankful for lately. For Monday, it wasn't much, haha. It was a horrible day, rainy, cold, Colby struggled at school and I felt like I had been hit by a bus (really bad dizziness.) The only good thing I can say about Monday is I was thankful I was able to go to bed early. Other than that, it was a sucky day. Tuesday I was thankful to be there for a friend who is going through a rough time (because of a stupid man of course.) She came over and we hung out, ordered pizza, worked on getting my tree up. She thinks I helped her by offering some emotional support, but she helped me, too, by letting me be there for her. I think a lot of times people don't want to tell me their problems because they think I have enough of my own. No, no, no. I want to know what's going on with the people I love and care about. So I'm thankful she came over. Yesterday I was thankful for taking an afternoon nap when Colby was on his bi-pap break. See, told you it's been a rough week. Today I'm thankful Colby had a good day at school. Tired of hearing that damn pulse/ox alarm go off lately.

Tomorrow Colby and I are getting a visit from a dear friend and we can't wait. Company! Love it. I'm making lunch and everything.

Okay, enough of my griping. Just can't help it tonight. Not been the greatest of weeks around here. But things will get better, because I said so. And what Mama says, goes.

THAT'S MESSED UP

I'll admit it, I was wrong today. Here's what happened. I caught myself saying, "Think I'll skip Mass tonight and work on putting up some Christmas decorations." Really, self, I mean really? How freakin' stupid can you be?! See, this is what all the bullshit commercialism does to the Christmas season, takes Christ out of it. People lose focus. If I'm not mistaken, this whole Christmas deal isn't about running yourself ragged, decorating even more than last year or shopping for deals. It's about the BIRTH OF JESUS CHRIST. Hence the name, CHRISTmas. Luckily I snapped out of it after a minute or 2. My utmost apologies, JC, for losing focus that you are indeed the reason for the season. I'm very thankful that I went to Mass and got to see one of my bestest girlie friends. I'm not trying to get all preachy here, but don't lose focus this Christmas season. Remember what is truly important and celebrate Jesus' birth in a simple, humble way. But for you, if that involves putting 57 strands of lights around your porch, deck, roof, mailbox, doghouse, tree and mantle, go ahead and celebrate that way, too. Just stay focused peeps.

I'm usually not one to be bothered by the weather. I figure you can't change it, so why get in a tizzy about it. But I swear if it's raining when Colby gets on the school bus in the morning, I'll scream. Honestly can't remember the last time we took him out to the bus without his rain poncho on. Such a pain in the keester.

Guess that's about it for now. Colby got to see his daddy and his grandpa today, so he wasn't hurting for attention that's for sure. But seriously, is he ever? Going to get up in the morning and start a weekly "to do" list. Lots of phone calls and errands to run in the next couple of days (frowny face) but it has to be done. Not to alarm you or anything, but only 3 weeks from today until Christmas. Great googley-moogley!

SLEEPY SATURDAY NIGHT

You know how you're going along thinking yeah, I'm going to get this done today, that done tonight, etc. and then SPLAT! you hit a wall. I have officially hit my wall. Just got Colby is bed and wanted to get a few other things done, but now I'm thinking I'll just go to bed. Start fresh tomorrow. Or then again, I may at least stay up and watch a Christmas movie. Or The Hangover because it's a freakin' funny movie.

On Thursday I got a call from the company that supplied Colby's new bi-pap. They said they had an order to change Colby's bi-pap settings. Huh? First I've heard of it. So I'm thinking the results of Colby's sleep study came in. I'll need to follow up with that on Monday. That would help explain the episodes of Colby's oxygen dropping every now and then through the night. Might also explain why he's been so dang sleepy over the last week or so. He fell asleep again today, that's not like Colby. He has taken more naps in the last 2 weeks than he has in the last 2 or 3 years. Always something.

Friday's thanksgiving - Wine Night. I love getting together with those crazy girlies. We were trying to decide how long we've been doing it, around 7 or 8 years we think. That's a heck of a long time to keep something rolling but we've managed to do it. We're all so busy, sometimes this is the only chance we get to talk to each other all month. It's cool because we'll pick up right where we left off last month. We've been through everything with each other over the years - marriages, divorces, career changes, illnesses, deaths, good times, bad times. Hopefully we'll continue for the next 8 years!

Today's thanksgiving is simple. I'm thankful for a beautiful, sunny day. I know winter is fast approaching and there won't be too many of days like this for a while. Got Colby out for a few minutes to get some Vitamin D out in the sun and drive his power chair for a bit. Yep, he's still running into the grass. Definitely still not following commands like stop or turn or don't run into the van. Honestly I'm starting to rethink the whole power chair thing. Just might not be Colby's gig.

Yeah, I'm also thinking go to bed. Sounds good. I'm a sleepy mama.

CHEESE RIDICULOUSNESS

Decided to clean out the fridge today. That can be an adventure sometimes, huh? Besides the soggy, brown head of lettuce and eggs that expired 2 weeks ago, know what else I found? Cheese, actually cheeses, plural. I couldn't believe it. Here's what I have: Velveeta slices (those are close enough to cheese I suppose), Laughing Cow cheese, a block of parmesan cheese, provolone cheese, block of white cheddar cheese, shredded cheddar cheese and "green shake can" parmesan cheese. Oh yeah, don't forget the holiday cheese ball that's in there, too. Not sure how that happened, but there are some serious cheese issues up in here.

No normalcy around here today. Actually, to be honest, Colby had a perfectly shitty day. He woke up with lots and lots of gunk. But I figured it was just a rough morning and he'd be okay once he got up and off to school. Nope. Had an incident where his oxygen dropped at school, too. From what I hear, the new nurse handled it just fine. I went and picked him up from school and when I got there, he was sleeping! Never in 4 years has this kid fallen asleep at school. Guess he was just tuckered out from the trip to Cincy on Tuesday. He's fine now, been sleepy most of the afternoon/evening. I'm glad he doesn't have school tomorrow. He can sleep in and take it easy. This leads me to what I am thankful for today. I am thankful that God has given me both the physical and mental strength to take care of Colby. You need both if you're going to raise any kid really, but really one with special needs. Also takes common sense, lots of patience and the ability to multitask like you wouldn't believe. Also thankful I've been given those gifts.

There are several of Colby's SMA buddies either fighting illness at home or are in the hospital right now. We HATE to hear this and are sending get well wishes and hugs. Please keep these kiddos in your thoughts and prayers. Hoping they all get home soon and have a healthy winter.

Off to bed. Working at the hospital tomorrow and my "boss" has already told me I'm going to be busy. Better get rested and ready.

WHAT'S NORMAL FOR YOU?

Okay, so I guess Colby didn't get a 100% thumbs up report from Cincy yesterday. Actually I forgot all about this until the neurology nurse called about it today. The x-rays he had taken November 10th showed a cyst on his 9th right rib. I have no idea what it means, but the neurologist wants us to follow up with orthopedics concerning this. Other than that the reports were all great.

Getting really super-duper, fired-up, doing a happy dance excited about the magazine that will feature Colby. It will be published and available for circulation January 1, 2012. To remind you, Maggie, the cool chick starting this magazine, did a story on Colby back when she was in college. Since then, she moved back to Louisville and is a freelance photographer (who does amazing work I might add.) She and several other photographers are going to publish a magazine called THIS…is Louisville. You can go to Facebook and check it out. And ColbyRuss CelebrityPants is going to be in the 1st issue as a follow-up to the article she did on Colby when she was in college at Western. There are several other really interesting topics being covered also. You can see the original article on Maggie's website. Go to www.maggiehuber.com, click on Story. Look how tiny Colby is in these pics!

Normalcy. That's what I'm thankful for today. Got Colby up this morning, no problems. Put him on the bus for school, then I went to work at the hospital. Period, end of story, that's how we rolled. No alarms going off, no choking episodes, no dr. appointments to go to, no issues with his equipment. I mean after all, isn't that how it's supposed to work? Kid goes to school, parent goes to work. Nothing extraordinary happened today, it was UNEVENTFUL. And in our little corner of the world, that is 1 word we are extremely thankful for. Here's praying for future normal days (well our "normal" anyways) around here. I could get used to this!

Very tired. Going to bed. Glad that stinking headache finally went away. I had it most of the day until around 4:00. It was starting to make me a very grumpy mama, but all better now. Thank you Excedrin. You rocked my world today.

COLBY TO CINCY, ALL GOOD STUFF

Colby had followup appointments in Cincy today. He saw the neurologist, dietician and physical therapist. He received all good reports. This is what I'm thankful for today, SOOOO very thankful. His PT here at home has noticed over the last couple of months for some reason his left wrist and fingers are getting tighter. Both the neurologist and PT in Cincy mentioned this also, so looks like Colby will be getting some sort of wrist sling/brace to help with that. The only other thing they mentioned was that Colby is very "healthy" and he doesn't need to gain any more weight. Ha! I could have told them that, they should try lifting him. Also thankful for a safe trip with no traffic (or deer) up and back. And a special thank you to Maggie for going with us, helping with Colby's equipment and keeping us company.

My inner Betty Crocker came out again. I wanted to take some treats to the PICU since we were "in the neighborhood." So yesterday I whipped out a pan of peanut butter fudge, snickerdoodles and this other stuff, don't know the name of it. You mix Rice Chex, peanuts, pretzels and M&M's, then pour melted white chocolate bark over it, then pour it out on wax paper to cool. Let's just call it Rice Chex Addiction because it's so incredibly delicious. I boxed it all up in Christmas tins and wrote the staff in the PICU a thank you note. When I took it up to B5, i.e. Cincy Children's PICU, it was eerie. I didn't even go back to the nurses' station. Just dropped the goodies off at the waiting room desk and got the hell out of there. Too much time spent there this year. Hope they enjoy it all.

Let me catch you up on my thankfulness. Sunday I was thankful for someone else's GPS. I was trying to go north on the interstate. There was a bad wreck and the police had the ramp blocked. Perfect. You'd think after living in this city 12 years I'd know my way around, but nah, not really. So I was wondering how to get to the next exit and yippee, I noticed the car in front of me, with Illinois tags, had their GPS going. Followed that dude right through the side streets up to the next couple of interstate ramps. Good stuff :-)

Yesterday I was thankful for snickerdoodles, more specifically, snickerdoodle memories. Do you know what a snickerdoodle is? It's a cookie, dammit! I'm surprised at the people I've met who have never heard of them. You roll snickerdoodles in sugar and cinnamon before baking and they turn out to be the most perfect, chewy, delicious cookie. Growing up, my mom didn't buy a lot of Oreos or Chips Ahoy. If we wanted cookies, we made them, and we made a LOT of snickerdoodles. I had the most important job of rolling them in the cinnamon and sugar. I've always loved making them. I can picture my mama and I in the kitchen with that old cookbook out. Such great times. Everyone should be so lucky to have snickerdoodle memories like I do.

Well peeps, I'm exhausted. Taking Colby up and back to Cincy for the day is tiring. Driving home in the dark and rain was doubly tiring. I have a headache and a tummy ache from eating crappy fast food today. I'm going to take some ibuprofen, some Mylanta and hit the hay. G'nite.

WELL, ARE YOU?!

So it's 48 hours after Thanksgiving. Are you still as thankful as you were 2 days ago? Are you still taking a moment to tell those in your life how much they mean to you and how thankful you are that they're in your life? Are you still giving thanks for various other aspects of your life - a nice home, a decent job, good health? I hope so. I think for the most part, we can all find a little something to be thankful for every day. I know there are really rough days. Been through a few myself. But usually at the end of the day, I can find SOMETHING to be thankful for, even if it's as simple as savoring the last piece of carrot cake or just surviving the 1st round of holiday craziness. I think that should be everyone's goal/resolution for the new year. Find SOMETHING good and decent in our lives to be thankful for every day. I will if you will. I'm already behind, but it's easy to get caught up. Of course I was thankful for Turkey Day on Thursday. Some family members weren't able to be with us, but for those who gathered around my aunt and uncle's table, I hope all enjoyed being together as a family. I guarantee everyone enjoyed the food. Not to brag, but my aunt and I freakin' owned Turkey Day this year. The food was some of the best I remember. I tried kale for the 1st time in my life and yeah, I think I can go another 41 years before having it again. Just not my thing, although everyone else said it was delicious. Not sure how a weed can be delicious, but what do I know?

Yesterday I was grateful for a safe trip up and back. I make fun of the Terdmobile, but I tell you, that van is a beast. Keeps right on trucking along wherever we drive it. And yes, also grateful to not come across any deer crossing the road. Would have hated that.

Today I'm thankful for a quiet day. I went and worked at the hospital, Colby's nurse stayed with him. It's always quiet when you work on the weekend. Giving double thanks I didn't break any equipment or thread spools the wrong way or spill any pills or any other goofball thing I've done around there over the years. It's been quiet around here today, too, a nice change. I've been back on the organizing/cleaning spree around here, basically because there's no where to put the dad-gone Christmas tree! If we get desperate I guess we can always just throw some lights up on the elliptical. I've been on a roll the last couple days. Throwing away crap right and left. Made 3 trips to the dumpster and taking a big load of crap (I mean treasures) to Goodwill in the next couple of days.

I'm listening to my Martina McBride Christmas CD as I type this, but I'm just not in the Christmas mood yet. I've never been able to get into Christmas while it's still November. We're still eating turkey leftovers for crap's sake. Can't we just do 1 holiday a month? We're barely unpacked from T-giving, but I guess I better snap out of it and get with the program. It'll be here before we know it. Yikes!

Think I'll wrap up for tonight. Want to get this Goodwill stuff loaded in the van, hook up Colby's feeding pump for the night, and maybe clean out the corner of the dining room area that has somehow turned into a big, fat, unorganized mess. How does that keep happening?

Good night all. Hope you had many wonderful Thanksgiving memories this past week. Don't forget your thankfulness, each and every day.

Colby and I are out of town for T-giving, about 1.5 hours northwest of home. Feels so good to be back in INDIANA!! To get here you take 2-lane back roads, no interstate. So we were driving here and a John Mellencamp song came on. Ahhhh, good stuff, I was loving it. Just glad we didn't see any deer. I'm always paranoid about hitting a deer. But like it would matter in the terdmobile. It would probably just feel like hitting a pot hole or running over a little stick haha.

I'm not a huge fan of Thanksgiving. I mean it's okay I suppose, guess I could take or leave it. But I love coming here for a few days, AWAY from that dumpy apartment, and spending time with the fam. Love getting in the kitchen and cooking with my aunt. And cook we did!! We were in this kitchen all dang day, but the time flew by and we had a great time. No disasters either. No buttered up turkeys rolling across the floor (yeah, that happened 1 year), no using salt instead of sugar in the cake (Loretta Lynn style), and no forgotten ingredients (although my uncle has made 3 trips to the grocery in 3 days I believe). I did almost catch a dish towel on fire, I'm not used to using a gas stove. But other than that, it's gone smoothly. And just for the record, I make the world's best carrot cake. That's not bragging, just a cold hard fact.

They live in a tri-level house so you know what that means, yep, taking Colby up and down stairs. My cousin has been a huge help in getting Colby downstairs to the living room then back up to our bedroom. That's definitely something I'm thankful for right now!! They have a dog this year. His name is Bo (short for Beauregard) and he's a golden doodle. He's gorgeous. He's only 8 months old and is huge, but is very well behaved and a sweetie. Colby and I want to add golden doodle to our Christmas lists.

I've been explaining to Colby Michael over the last couple of weeks how we should give thanks each and every day, not just on the 4th Thursday of November. We're so lucky for the people in our lives who care about us, love us, help us, etc. Because let's face it, we need a lot of help! I hope he gets some concept of it.

So the rest of the fam will come over tomorrow and we'll chow down on the typical Turkey Day feast. Around here it'll be turkey, mashed taters and gravy, stuffing, corn, green beans, kale (icky), rolls, orange salad (family tradition), deviled eggs, carrot cake, pumpkin pie, appetizers and that strange cranberry sauce crap. I think that's about it. We're famous for leaving something in the fridge come dinner time and it not getting eaten. Guess we should make a list. Colby and I will pack up and head home Friday.

Black Friday. Never have, never will. Don't even ask.

Time to go snuggle up with my favorite blessing of all, sweet Colby boy.

TURKEY DAY ALREADY?! WELL ALMOST

Another great day for Colby at school! That kid is on a roll. He was even using his eye gaze, wow! It just kills me because if Colby WANTS to do or say something, he will. That's the ongoing problem we're having, getting him to WANT to use it regularly for communication and education, too, not just "play stuff" like telling knock-knock jokes, turning on the TV, etc. I hear in school today, while using his eye gaze, he found the computer functions, then the movie player, then Windows Media and then started his Spongebob movie. That lil stinker!! So obviously it's not the ability he lacks in using his eye gaze communication, it's his motivation. Kid drives me insane sometimes. But I'm pretty sure every 9-year-old drives their mama at some time or another.

I've reprinted our "out of town lists" and have started repacking. We're leaving tomorrow after Colby gets home from school and gets a bath for T-giving with the family. Can't wait to get over to INDIANA again. I think this is the 3rd year in a row we've done this, gone to my aunt and uncle's for Turkey Day. I really enjoy spending time with my aunt. She so sweet and spoils me rotten. We spend the whole day Wednesday cooking and baking. Okay, she's an excellent cook but not much of a baker. So I make the dessert and she helps (grates the carrots for my carrot cake) and then we work on the side dishes together, under her supervision of course.

I wanted to say THANK YOU to everyone who helped with the bazaar and band benefit held for Colby and me this past Saturday. It was a heckuva busy weekend. Lots of setting up, organizing, etc. My family and friends worked so hard to make it a success, which it definitely was. We had approximately a butt load of food left over. I was more than happy to donate some items to the Moose Lodge. They have done so much for us over the years, it was nice to give back to them for a change. We also donated the extra sandwich and hot dog buns to a local church that does a soup kitchen. Again, THANK YOU, THANK YOU to all who contributed in some way. I know times are tough for a lot of people right now and it makes it even more meaningful that so many gave to our benefit.

We had a big ticket item donated to us, a brand new 42-inch TV, thanks to a couple who have been extremely kind and giving to Colby and me over the years. We decided to make it a special raffle. We sold 200 tickets at $5 each. It was won by someone from the Moose. Here's how I hear the story. This guy was on his way to go birthday shopping for his wife, as her b-day was Sunday. He decided to stop at the Moose and have a beer before shopping (as many Moose men before him have done.) He bought 2 chances to win the TV, put his wife's name on the tickets, and ta-da, he won the TV! So she got a very special gift for her birthday. Pretty cool, huh?

I'm sitting here listening to my iPod. The ear bud is in my right ear and my left ear is open, ever alert for Colby's alarms. I love this thing, I could listen to it all day. I've only put my absolute favorite songs on it. Last week I downloaded some KT Oslin. Remember her from the 80's? My dad always loved her songs so I grew up listening to her. Also want to get some Maroon 5 and some Christmas tunes loaded soon.

Well it's almost midnight so I'll wrap up for now. Several people on Facebook have been posting something they're thankful for every day this month. I've enjoyed reading them as it gives you a better idea of the person they are and what's going on in their lives. We should all take note and do that EVERY day. Be thankful for the things you have, don't worry about the things you don't, right? Let the little stuff go. Oh my, if I could only practice what I preach!!

WOW - WHAT A WEEK - AND UPCOMING WEEKEND

Colby's 1st official week back to school went smashingly well. The new nurse is going to go to school with him Mon Tues and Wed, then I'll go with him on Thur. (Love the new nurse by the way, very professional, very conscientious, she's a keeper.) By the end of the week the bus situation was worked out. Yesterday Colby's school held their big annual fundraiser, so we got the fun day at school. Just walked around and looked at the booths. I had cake for breakfast and popcorn for lunch while there, so you know I was happy. Each class was supposed to decorate either a wreath or a Christmas tree for the silent auction. There were some very creative ones. I loved the tree with laminated recipes hanging on it. I would have bid on it except then I thought WTH I never cook anymore. Colby's class made a U of L wreath. I've said it before, but I love that school! That's one of the main reasons we stay in Louisville. Actually the only reason.

So tomorrow is the big benefit my friends and family have spent weeks planning. You know, I've done some stupid shit in my lifetime. Stuff you look back on and think oh my, what was I thinking? Oh yeah, I wasn't thinking. But I'll tell you this, my choice in friends isn't one of them. Colby and I are surrounded by loving, caring, giving, sweet, wonderful friends. When you have people like that in your life, it gives you such a lift, a sense of comfort. I know if Colby and I ever really needed something, there are many friends we could call on to help. This benefit is a perfect example. When Colby was in the hospital, one of my friends said hey, you can't work right now, I'm thinking we should help you all out and organize a benefit. Then she called some of my other buddies and it has grown to be quite the event! I'm excited tomorrow to see everyone. I haven't gotten out much in the last couple months so I'm looking forward to the socializing. I've been saying all week I have 3 goals to get me through the benefit tomorrow, 1. Don't cry. Yeah, right. I'm truly overwhelmed by the generosity and thoughtfulness of others, so yeah, it's gonna happen. 2. I'm wearing new boots so the goal is don't trip over my own 2 feet and last but not least 3. Don't drink so much I get sick. (Who?! Me?! Never, wink wink.) I know many, many people worked hours and hours to do this for Colby and me. PLEASE know how much it's appreciated. I'm humbled by everyone's love and generosity. Colby and I are blessed to have so many sweet people in our lives. See, there still is good in this world. Good people ARE out there, and we're fortunate enough to share our lives with many of them.

We're spending the weekend at Mom and Kenny's. Just thought it would be easier with bridge traffic, wanting to take Colby to the benefit but not for the whole day, etc. Mom and I are taking Colby to the benefit earlier in the day. Then when he gets tired, I'll bring Mom and Colby back here, get him settled for the afternoon/evening, then go back to the benefit. Crazy few days ahead. We'll get home Sunday afternoon, unpack. Colby will go to school Mon and Tues. Then I'll repack us and we'll head to Mitchell for Turkey Day. That's a lot of packing, repacking and traveling with the Colbster. But so very worth every bit of it!

In case you need a reminder, here are the details for tomorrow's festivities: Sellersburg Moose Lodge, Saturday, November 19. 11:00 a.m. to 3:00 p.m. - bazaar with many vendors such as 31, Pampered Chef, Avon, etc. Starting at 4:30 there will be food and 3 different live bands. Throughout the day you can bid on silent auction items/baskets. Come by just to say HI if you can. Can't wait to see everyone!! Best get some sleep. Nite all.

D DAY

For us, this means Diagnosis Day in that 9 years ago today, we were told Colby had Spinal Muscular Atrophy. Huh, spinal what? Never heard of it. (Still wish I'd never heard of it if you know what I mean.) By the time the neurologist finished telling us Colby's prognosis, I was numb. I'll never forget the cold, blunt and matter of fact way he told us what he thought Colby had. Louisville hasn't exactly been blessed with an excellent crop of winner pediatric neurologist over the last couple of decades, just sayin'. Also, the "we" I'm referring to is Colby, my sister-in-law and myself. The ex was too much of a scared weenie face to go to Colby's appointment that day. The next few days after that are a bit of a blur. I do remember thinking, this couldn't be happening, no, not Colby. Not my kid. This kind of crap happens to other families, not mine. The neurologist said there was very little that could be done for Colby and that more than likely he would die from a respiratory infection by the time he was 12 or 18 months old. Oh really? I didn't know how, but I was hell bent and determined that Colby would live to be 2 years old. That goal seemed to be out of our reach based on what we were learning at the time about SMA. But thanks to God, or karma, or the universe or dumb luck or whatever force it was that put us in touch with Cincinnati Children's Hospital and other SMA families who were also beating the odds, here we are, 9 years later. I'd love to wheel Colby into that neurologist's office and say hey pal, check out this 9-year-old SMA Type I kid here. And oh by the way, screw your statistics, you ignorant jerkoff. I do believe faith, love, knowledge, support and sheer determination have been kicking your stat's ass for years now. Furthermore, through the good days, great days, horrible days, and really horrible days, I wouldn't change a thing. I don't look at Colby and see what he can't do. I only see what he has done, beating the odds every day, every month, every year he continues not only to survive, but thrive. I'm so very proud of my sweet boy Colby Michael Russ. Can't wait to see what else he accomplishes in the next 9 years!

Colby had his 1st "real" day back to school today. The bus was supposed to pick him up at 9:15 but somehow that didn't happen. So glad I called last week and got that all lined up with Transportation (grrrrr.) So I took the nurse and Colby to school in the van. I only stayed a few minutes, just long enough to make sure Colby was settled in class and that the nurse was comfortable. The bus did pick them up at school and yes, I was there and followed behind the bus in the terdmobile. Well, it was the nurse's 1st time being on the bus with Colby. She may have needed something. Colby had a great day at school. Thank goodness. I was kind of worried since he didn't go to school at all last week. Sometimes it's hard getting back in the school groove. So tomorrow, if all goes as planned, the bus will pick up Colby and the nurse for school at 9:15 here at the apartment. Then the bus will be at school and pick them up at 1:15. So I'll have some time to myself to run errands or get stuff around here done. Woo hoo, gonna party like crazy for a whole 3 hours on a Tuesday morning.

Did you watch Diane Sawyer's interview with Gabrielle Gibbons and Mark Kelly? It was amazing. I cried tears of joy. I cried tears of heartache. I try very hard not to be a jealous person. First of all, it's a very ugly, petty emotion and I don't think time should be wasted on it. Secondly, I think I've actually been pretty darn blessed in my life. I could have it so much worse. However, as I watched the Gibbons/Kelly interviews, I realized I was jealous of their relationship. I was thinking, how and where do you get that kind of love? Based on my past relationships, I obviously don't have a clue. I'd like to one day find someone who would love me as unconditionally as Mark Kelly does his bride. He takes that "in sickness and in health" thing really seriously. You can tell he's very proud of his wife, as he should be. He has always believed in her, always kept a positive attitude that she would get better, and I believe his attitude has helped her in her recovery a great deal. That's what I want. Someone who, if life were to throw us an unexpected, unbearable situation, would love me and have faith in me through it no matter what. I can see it now, Dear Santa, you'll never guess what I'm asking for this year…besides a hubcap for the van, of course.

GOOD STUFF

Well, it's mostly good around here, I'm happy to report. Starting with Colby, my favorite topic of all time. He had appointments at Cincinnati Children's this past Wednesday and Thursday. We went up Wednesday night for a sleep study there in the hospital. That was supposed to be the easy part of the visit, but not so much. The main problem was even though Cincy called twice to remind us of the appointment, they failed to mention we would be discharged at 7:00 a.m. the next morning. Huh? Colby's appointments didn't start on Thursday until 10:15. I was like, so let me get this right, you're kicking us out in the morning? Just what in the crap are we to do with Colby, and ALL his supplies and equipment, for 3 hours?! Oh hell no. But in the end it all worked out and we were able to just stay put until time to leave for Colby's appointments (squeaky wheel you know.) The appointments on Thursday were a breeze. First up, lab work. I thought they would want blood work but they only wanted a urine sample. Cool. So we taped this baggie thingy on Colby's thingy and away we went to the next appointment, x-rays. Then from there we moved to cardiology for an echocardiogram and EKG. Then we met with the cardiologist, who said Colby's heart was just fine and she doesn't need to see him for 2 years. Happy, happy. Then we met with the pulmonologist who said Colby looked good and sounded good and for me to stop worrying about him so much. Easy for him to say, it's not his kid! He said overall Colby is doing fine. Don't change his bi-pap settings for now and just give him extra cough treatments or bi-pap time if he needs them. We'll get the sleep study results back in 10-14 days.

So you should have seen the 8-incher I was holding today! An 8-inch ponytail, that is. Got all my hair whacked off today to donate to Pantene's Beautiful Lengths. It's short, super short as a matter of fact, but the style is really cute. It'll take some getting used to. Thinking maybe now I need some highlights. Don't know, we'll see how this new-do looks over the next week or so. Usually I won't do any kind of color/highlights in my hair because it's too much work (and money) to maintain.

We were very tired after getting home from Cincy Thursday night. Those are long, exhausting trips. Even though by now I could pack Colby's stuff up blindfolded, I always worry I've forgotten something important that he needs. There's no way that could happen. I have a "don't event think of leaving home without this stuff for Colby" list that I check, double and triple check. But if I didn't worry about that, I'd be worrying about the van breaking down, getting stuck in traffic, getting bad news about Colby, etc. Like I said, exhausting, mainly mentally. So we slept in Friday morning. Ahhhh, that was nice. We've had a laid back couple of days, which is just fine with me. Got the apartment cleaned. Spent some QT with Colby. I'm sure things are going to get crazy around here with the benefit next weekend, Thanksgiving the week after that (how is that possible?!) and then boom, it's December and all the Christmas hoop-dee-do. Yikes. Don't know if I'm ready for all that or not. Too freakin bad, huh? Ready or not, here it comes.

Mr. Colby is going to be a star soon. Or should I say even more of a star than he already is haha. Years ago when Colby was a baby, a photojournalism student, Maggie, did a project on him and SMA for one of her classes. Well she has moved back to Louisville. She's a freelance photographer and has a very impressive list of jobs she's done. Now she's starting a magazine called THIS…is Louisville, and Colby Russ is going to be featured in the first edition in January 2012. So excited! She's been hanging out with us as we go through the everyday routine with Colby. I think Maggie has taken quite an interest in Colby (but you know, who wouldn't, right?) She even drove up to Cincy and took pictures while we were at our appointments. Can't wait to see the article!

Well, that's all folks. That's what is new here in Russ Land. I'm determined to get up in the morning and exercise, which is not going well by the way. I can't believe how sore I'm getting after workouts. It takes so long to get into even just decent shape. Then if you don't stick with it, like you have surgery or you're kid is in the hospital or something like that, boom, you're huffing, puffing and flopping around trying to do even the easy exercises. WTH?! I find it highly irritating. Gotta stick with it though.

BENEFIT INFORMATION - UPDATED

BENEFIT FOR COLBY RUSS

Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue, Sellersburg, IN 47172

11:00 a.m. – 3:00 p.m. - Bazaar
Lots of booths. Admission to bazaar is free. Excellent time to start Christmas shopping. Silent auction items will be available for bidding.

***********************************
Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children 12 and under, which includes food, entertainment, music...and much, much, more!!!

4:30 p.m. – 5:30 p.m.
Music provided by “Under Construction” - Eclectic group of teenagers singing everything from Cowboy Casanova to Crazy Train.

6:00 p.m. – 8:00 p.m.
Music provided by “Bad Omen” - Rock-n-roll all the way.

8:00 p.m. - 9:00 p.m.
Silent Auction Wraps Up

9:00 p.m. – 11:00 p.m.
Music provided by “Changing Lanes” - Three member acoustic group performing originals and covers from influences in pop, rock and alternative.

If you have questions or would like to donate a raffle item or silent auction basket, please contact Pam at 812-989-2957.

If you will not be able to attend and would like to make a donation, please make payable to
Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172

**********************************

Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist.

Colby’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's Hospital. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.

Thank you in advance for your support!

JUST CALL ME BETTY

Betty Crocker that is. Spent Friday baking and Saturday decorating large princess tiara cookies to help my friend who was hosting a baby shower. She wanted to give the cookies as party favors. She asked if I would help and I said I'll do even better, I'd do all of it, just bring me the ingredients to make the cookies and icing. So she did. When she was leaving she said oh, I need 45 cookies. Huh?! Oh crap I thought. Did you say 4 or 5 by any chance? Nope, 45. Took 3 bags of cookie mix and a double batch of royal icing, but they got done. It was my 1st time working with royal icing so I was kind of winging it. Not my best decorating effort, but she was pleased with the way they looked and that's what matters. It was so nice for me to be able to help a friend instead of the other way around for once. Very glad to do it.

Then I made a broccoli casserole for a luncheon at my church. I serve on the bereavement committee and sometimes we also help with the food for special luncheons, like today's for All Souls Day (at least I think that's what it was for.) I find getting in the kitchen relaxing so actually I enjoyed the cooking and baking I did. If I was really smart I would have saved some back for myself, but I didn't. Oh well, just gives me an excuse to make another casserole. My great aunt's recipe, it rocks.

I've noticed Colby isn't quite back to baseline from before his hospitalization. Doesn't take much for his heart rate to go up or his oxygen to go down. Hmmm, what could explain this? Seasonal allergy goop causing respiratory issues? He just needs more time after such a long hospital stay? This is his new baseline? Who knows. I learned long ago you can't figure out SMA. It is what it is and you have to deal with the situation at hand. So that's what we'll do. Maybe when we go to Cincinnati this week and Colby has a sleep study, that will give us some answers. We did have a very busy week last week. Maybe he just needs some extra rest. The school corporation doesn't have school Monday and Tuesday of this week so he'll be able to chill before we head to Cincy on Wednesday and Thursday.

My friends have been working their bahunas off getting our upcoming benefit ready. They had another "Colby's Committee" meeting today and I joined this one. A lot of work has been done and there's still a lot to do. I want to help in some way, after all, Colby and I are the ones receiving the benefits of this event. I'm not exactly a sit on the sidelines kind of girl, it's my nature to jump in and help. So far they have 10 or 11 vendors for the bazaar. The silent auction items are shaping up, too, lots of cool basket themes. I'm very impressed with how much work they've done already. I have the most loving, wonderful, supportive, giving, helpful bunch of family and friends EVER. I'll post more info on the benefit in the next day or 2.

So I've started exercising again. Haven't done that since around the middle of August. I have 10 or so aerobics tapes around here. Decided to start out slow so I put in the shortest, easiest of the videos, a little 32-minute workout of toning and cardio. No pushups, no crunches, no step aerobics, no big deal, right? OMG thought I was going to collapse before it was over and I'm not kidding! I didn't know which was going to give out first, my wobbling, burning thighs, my right hip or my pounding heart! It was awful but I struggled, grunted and cussed my way through it. Did the elliptical today. Can't wait to see what muscles ache tomorrow.

That's all for now I guess. I'd better get to bed. Nitey-night blog followers.

THURSDAY'S THOUGHTS

I've had a couple of my friends ask me where I've been the last couple days. They hadn't heard from me much. One word: COLBY. Take today for example. Got COLBY up for school. The nurse came and we got COLBY loaded up in the van. Took COLBY to school (in the cold pouring rain I might add.) Stayed with COLBY and the nurse at school. Then we loaded COLBY in the van and brought him home. The bath aide came over and we did COLBY'S bath. Then gave COLBY his afternoon cough treatment. Hung out with COLBY for a couple of hours, then put COLBY to bed. Also took COLBY trick-or-treating on Halloween so yeah, it's all about the kid this week. And that's different from any other week how exactly...?

So this new nurse, whom we really, really, REALLY like, wants to go to school with Colby 3 days a week. Hallelujah, yee haw, good news, thank goodness. I'm hoping the principal will agree to let me come to school with Colby 1 day a week. Haven't had a chance to ask him yet. I really like being in the school to get a feel for what's going on in Colby' class. He doesn't exactly come home and get to tell me about his day, you know? If he's able to go to school 4 days a week I'll be very happy with that for now. Next week is a no-go. No school Monday and Tuesday, professional development days. Wednesday and Thursday we have appointments in Cincy. Friday we'll need to rest from being at Cincy! But the following Monday, it'll be school full tilt. Tomorrow I'll talk to the principal and transportation to get a bus starting on the 14th. The nurse will come here to the apartment. We'll load them all up and he'll be off to school! I think the nurse is ready to watch Colby on her own. Oh who am I kidding, I'm sure I'll either ride the bus with them and go to school 1 more time or maybe I'll just follow the bus and "supervise" the new nurse 1 more time. Gotta make sure my sweet boy will be okay!

Mr. Colby is being quite stubborn lately and NOT using his eye gaze/communication device. I thought maybe he just didn't want to do it for his mama, but today at school he didn't give much effort for the speech therapist either. I don't get it. Seems to me if you finally, after 9 years of not being able to communicate your needs, had a machine that can "talk" for you, wouldn't you want to "talk" all the time? Apparently not. We've told him over and over he can say anything he wants with the eye gaze. Tell us your feet are cold. Tell us your favorite color. Tell us you're bored. Tell us our breath stinks. Tell us you want to go outside. Tell us SOMETHING for shit's sake. He's obviously not feeling it lately. So we're going to try to figure out a way to motivate him to use it. Any suggestions?

This Halloween candy has got to get out of this apartment, immediately! I packed up 2 baggies worth of suckers, Nerds, Life Savers, etc and gave them to Colby's bath aide today. She didn't want any chocolate (what is wrong with that chick?!) But tomorrow the chocolate stuff has to go somewhere, anywhere but in my face. It's no big secret I gained weight over the summer. My larger, wider ass pretty much tells the story on that these days. Thanks thyroid issues and hospital stay stress eating, really appreciate it. I've been trying to lose some of it and that will never happen if all these goodies are around here. I'll openly admit I have no self control when it comes to sweets. So it's all got to go. Except maybe those peanut butter Snickers squared. Man, those things rock.

I want to take a moment to say THANK YOU to my friends who are organizing this upcoming benefit for Colby and me. My friend Pam said hey, you haven't been able to work, we're going to have a benefit to help. Then she called 5 or 6 of my other girlie friends, and viola, a benefit is now in the making. THANK YOU, THANK YOU to those who are organizing the benefit. THANK YOU to all who are helping to spread the word. THANK YOU to all who are donating or collecting raffle and auction items and THANK YOU to all who plan to attend. Should be a fun time with lots of activities throughout the day. I've said it before, don't know where I'd be without so many caring, giving, loyal friends and family. Again, THANK YOU SO VERY MUCH everyone.

I just realized it's almost midnight. I've been blogging and babbling on for quite some time now. Need to get to bed. Thanks for "listening." There are several SMA kiddos in the hospital right now. Tis the season for respiratory complications. Some of them are good friends of ours. If you're the praying sort, please give a shout out to the Big Guy for these sweet kids. I'm hoping they all get well and get out of the hospital soon. It's a sucky place to be, especially this time of year with the upcoming holidays.

BENEFIT INFORMATION

BENEFIT FOR COLBY RUSS

Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue
Sellersburg, IN 47172

11:00 a.m. – 3:00 p.m. - Bazaar featuring lots of booths!
(Excellent time to start Christmas shopping)

***********************************
4:30 p.m. – 5:30 p.m. - Music provided by “Under Construction”
6:00 p.m. – 8:00 p.m. - Music provided by “Bad Omen”
8:00 p.m. - 9:00 p.m. - Silent Auction
9:00 p.m. – 11:00 p.m. - Music provided by “Changing Lanes”

Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children (12 and under),
which includes food, entertainment, music…and much, much more!!!

If you have questions or would like to donate a raffle item/basket, please contact Pam at 812-989-2957

If you will not be able to attend and would like to make a donation, please make payable to Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172

**********************************

Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially-equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist at Cincinnati Children's Hospital.

Colby’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.

Thank you in advance for your support!

WAY WORTH IT

When we do Halloween around here, we do it BIG! Hey, wouldn't have it any other way. Colby was without a doubt the cutest cowboy EVER in his costume. He was set head to toe - hat, vest, bolo tie, marshal star, chaps, boots, holster and guns, lasso on his wheelchair and the finishing touch, a fake moustache. Every cool cowboy has a moustache of course. On Saturday we went to an outdoor fall festival thingy here in Louisville. Colby's "Aunt Kimmie" went with us. It was windy that day but the fall festival was short, which was good. Saturday night was WILD, I mean crazy, at 4th Street Live. I went with my friends, who happen to be sisters and were matching silver aliens that night, Joni and Jill. We had a blast. It was great to get out and be silly for a bit. Then for the actual Halloween day, Colby went to school where they go around to all the classrooms for trick-or-treating. Colby is in 4th grade but this was the 1st time he got to do the school t-o-t. In years past he's either been sick or had appointments in Cincy the day they did it. He was decked out as Colby Cowboy and I was wearing an Indian costume. Get it, cowboy and Indian? We got some really good pics. My mom went with us and a good time was had by all. Later Halloween night Colby and I went to his super fine babysitter's house for MORE trick-or-treating. Colby was tired by the time we got to Rosa's, so he had to wear his bi-pap the whole time. The old me would have freaked because Colby wasn't in his complete costume, it was getting late, he was tired, etc. But the new me was like hell yeah we're going trick-or-treating on Halloween night!

Colby was worn out by the time we got home. He even fell asleep in the van. My everything hurt by the time we got home. My feet from walking. My back from lifting Colby all day. Somehow I've managed to pull or pop or tear or mess up my right hip. Don't know what the crap I've done, just know it's been hurting for a week or so. I was pushing Colby in his manual wheelchair and we hit a bump in the sidewalk. Colby's wheelchair stopped and I ran into the back of it. Let's just say I have a bruise in a very interesting spot at the moment. Yeah, ouch. I had a headache from running around all day. Like I said, EVERYTHING hurt by the time we got home. Was it worth it? You better believe it. Would I do it again, absolutely. Loved spending such a special Halloween with my friends and my bestest, sweetest, cutest cowboy Colby.

Hey guess what I did today? I worked! First time since oh, I don't know, the middle of August. Left Colby alone for the 1st time with this new nurse. I was only gone a total of 4 hours, but I was a nervous wreck leaving Colby. Work went fine. Anyone who knows me knows I haven't had the best luck at that job sometimes. I have a tendency to break machines, leave there in tears, etc. But today went well, it all came back, kind of like riding a bike. Even had to change out ribbons and didn't tear up anything. Woot woot! I'm thrilled with this new nurse, and the best news, she's going to start going to school with Colby. Fan-freakin-tastic! She's wants to do it 3 days a week. I'm thrilled. That means I'll have to find another nurse to help around here, but getting Colby back in school, on the bus, with a new nurse takes priority. The whole nursing thing is exhausting sometimes. I'm going to blog about that one day in the hopes that it can help another SMA family. Although I don't know how much help I'll be, because at the moment, I'm still confused as to how many nursing hours Colby gets and for how long. Thought that was all worked out but now I'm not so sure. Exhausting I tell ya.

So glad to be reporting things are looking up around here. Nothing else has exploded. All major appliances seem to be in working order. Colby is well. I feel just a tad more sane than I did a month ago when we came home from Cincy. Still a long way to go, but just need to take baby steps to get there. Bye for now.

MAMA AND COLBY: 4 EVIL SPIRITS: 0

Been a busy but good week. For starters, we got Colby back in school. Took him 2.5 hours on both Tues and today. It was so great getting back to more of our normal routine around here. Of course everyone at school oooo'ed and aaaah'ed over him. Colby's school is special in so many ways, most of all by the staff that work there. They "get it" - the overall big picture of having, helping, teaching a special needs child. They "get it" that sometimes our only goal is to get our children to school. Just get them up and through the school doors with no major health crises. That was certainly my only goal this week for Colby. Love that school. Love that Colby is slowly getting back. Today was a very difficult day, though, because a student at the school passed away this morning. Making matters worse, the student's dad is a staff member there. Devastating when we as a small school community lose one of the students, but this is a double whammy.

Next week we're going to try for Mon, Wed, Fri for Colby going to school. And by "we" I mean a nurse, Colby and myself. That's right, a real live nurse to help out. And it gets better. She's thinking of being the nurse that goes to school with Colby. We used this week as a pilot I guess, to see if she would be interested. I don't think she wants to be it full time, but right now I'll take what I can get. Yeah baby, love it when a plan starts to come together.

Been talking a lot with the nursing agency this week. Good communication, what a concept! Wanted to make sure everyone was on the same page. I guess all the confusion recently isn't totally their fault, although I'm sure none of it could be my fault haha. I tried to explain to the nurse scheduler that a lot of my anger, 90% probably, is misdirected. I'm pissed off at the nurse that up and left Colby and me high and dry 2 days before my surgery, having to worry about getting another nurse. Yes, I know the kind, Christian thing to do would be to forgive this person. Let it go, have faith that in the end it will work out for the best. Blah, blah, blaaaaaaah, sorry, just not there yet. Couldn't have been crappier timing on her part. I do like the nurse they sent to work with Colby. Very good nursing skills, very professional, easy to talk to, get along with. I'm thrilled that she wants to work with us and that we now have hours to let her use. Only thing is she wants to only work through the week, not on weekends. Guess I'll have to tone down my rockin' social life. Oh my, that's a knee slapper, isn't it?!

But speaking of socializing, I get to do a little this weekend. That's awesomely awesome. Wine Night is tomorrow night here at the apartment. Haven't seen these gals since August. Miss them. Lots of people think that at Wine Night we get together, learn about, taste and critique wines. Uh, no. We just get together to eat, drink and blow off some steam. Nothing fancy-schmancy at all. Saturday Colby and I are going to a fall festival/trick-or-treating thing here in Louisville, along with friends of ours. Then as of right now, Colby's dad is coming over Sat night and I have plans to get out with Joni and her sis for some Halloween fun. Very excited!

That's the scoop here. Need to get in bed. Some major house cleaning and some minor snack making need to take place around here before 6:30 p.m. when the wine shall floweth and we shall talketh like the silly gals we are. Nite peeps.

ZIP-A-DEE-DOO-DAH

Since I "talked" your ears off last night, I'll make this entry short and sweet.

Been a good day. Really good. Nurse showed up on time. She's kinda quiet, which if you know any of my friends, I'm not used to that, wink-wink. She did a great job working with Colby. I think she may be a little overwhelmed with learning his routine, but that's totally understandable. It's a lot to learn - new machines, Colby's little ways, me watching over her shoulder (just until she gets the hang of it.) Overall I was impressed with her. She was professional and asked appropriate questions. I even let her practice driving Colby's power chair, just out in the big, open parking lot for now. She's coming back tomorrow. Hope all goes as well then as it did today.

Colby's costume is now 95% complete. Having trouble with the last piece and honestly don't know where to find what we're looking for. Even if we don't get it all together the way I would like, you know he'll still be adorable in his ______ costume =-)

My mom will be thrilled to hear we found Colby's glasses! Colby has 2 pairs of glasses, one of which are the transitional lens for when he goes outside. Of course those were the ones that were misplaced (not lost I kept telling her.) They've been "misplaced" for about 10 days now. Every time Mom comes over here she has torn this place up looking for those things. I went to look for something I had dropped under Colby's bed, and ta-da, there they were. Mystery solved.

That's all I got. Geez, when nothing explodes and/or implodes, the day is just downright boring around here. Just kidding. I'd take this kind of day over and over again x 100. No drama, no major problems, Colby doing well. You know, the way it SHOULD be and the way I hope becomes our norm very soon. Adios for now.

IT'S GETTING WEIRD AROUND HERE (Weirder)

I'm in the mood to "talk" so pull up a chair. Here it goes.

First, my favorite subject ever, Colby Michael. He's doing quite well. I was concerned over the weekend because he's had some episodes of high heart rate. It was pretty bad Friday. No fever, no drop in oxygen, but his heart rate was way too high and his face was beet red/flushed. It was weird. I thought oh great, we'll be in Cincy before the weekend is over. He did the same thing on Saturday but not as bad. Today was better also. I don't know what the heck is going on, but I'm keeping a very close eye on him. No more trips to you-know-where for a long, long time, please and thank you.

We've got Colby's Halloween costume 90% ready at this point. Still trying to pull the last bit of it together. Some of you know what it is, but for the most part I've kept it a secret so if you know, don't tell! Hope the weather is decent for this weekend and trick-or-treat. We've got some big plans and don't need them ruined by yucky weather.

Some time this week Colby will be going back to school. Haven't decided what days and for how long each day, but he will grace the doors of Churchill Park at some point. Since we don't have a nurse, I'm the one who will be taking him and staying with him during the school day. So we don't need to make arrangements with the bus driver, schedule a nurse, etc. Guess we'll wing it based on how Colby is feeling. We absolutely are going on Thursday for trick-or-treating at school. I mean you know, why else do you take your kid to school if not for trick-or-treat day? Can't think of a better reason to take him to school if you ask me.

Now let's recap this past week's nursing fiasco. First of all, we had the same 2 nurses for the last couple of years or so. One of them went MIA a couple weeks ago and the other can't work right now due to personal family reasons. Okay, let's get some new nurses in here to help, sounds easy enough. WRONG!! Nurse #1, we like her, she's great. Would love for her to work with Colby. She was unable to work over the weekend (both Sat and Sun) due to not having her paperwork turned into the nursing agency. She's supposed to be here Monday night, hope she gets the paperwork turned in. Nurse #2, we like her too. She trained for 3 hours last Wed. Was supposed to come back on Thurs. Called and asked if she could reschedule. I wasn't happy about it but whatever. She's supposed to be here tomorrow morning. So help me, for her own good, she better not be late. Tired of all the lame ass excuses. Nurse #3, this nurse contacted me, interested in going to school with Colby. Great, fantastic, love it. She was supposed to be here Sat at 11:00. Called to say she needed to attend a funeral and could she come later in the day. Sure, why not? She was a complete no-show. She never showed up and she never called, so that bitch is fired before she's even hired. Don't want to hear back from her. Let's see what the week brings as far as nursing goes. Should be interesting I'm sure.

Our rock star babysitter was here last night helping me with Colby. While she got him ready for bed, I went to Wal-Mart to check on Halloween costumes. I was in the store thinking if I don't find some stress relief, I'm going to stroke out around here. Puzzles! I always loved working puzzles so I bought a 550 piece. Just something to do to take my mind off the BS that arises on occasion around here. Being the dork I am, I stayed up until 2:00 a.m. finishing the puzzle in 1 night. But it really did help. I enjoyed doing it and had the best attitude when I went to bed. I was thinking, I need to focus on the good in my life. Decided the next time I blog I was going to focus totally on the positive aspects of our lives. Turn all these worries over to God, he'll guide me to the answers when it's time, all that feel good kind of stuff. Went to bed with a light heart and smile on my face. Then WHAM! CRACK, BOOM, BAM! The top shelf of my entertainment center exploded, literally, at 6:30 this morning. It was horrible. This big crash, glass breaking. I thought someone had broken into the apartment. For a few seconds, I really thought our lives were in danger. It was terrifying. Once I realized no one was here, I just couldn't believe what I saw. I was like, WTH just happened here? You can call it what you want, manufacturer defect, heat from electrical equipment, blah, blah. I think I've got some bad spirits, karma, SOMETHING like that following me around right now. Think about it. I've never been sick a day in my life, never had a stitch, a broken bone. Never been to the hospital except to have Colby, then I get thyroid cancer. Colby had been out of the hospital for almost a year, then ends up in the hospital for 39 days. We get home from the hospital and my TV, dryer, cordless phone and now entertainment center are all broke and/or not working. Oh yeah, and the screwed up nursing situation. It's like a cloud of uncertainty and anxiousness is with me right now. I think these strange, for lack of a better word, "evil" vibes were pissed that my attitude was changing for the better. So they wanted to get my attention, hence breaking the entertainment center. Does that sound crazy? Of course it does, it came from my brain. But I've got news for whatever is causing the jacked up, weird, eerie force that is hanging around here. YOU WON'T WIN. Colby and I will. So you might as well pack your bags, get the hell out of here and bother somebody else.

Well now that I've convinced you I'm a total cuckoo head, there are good things going on around here, too. My sweet stepbrother and sister-in-law offered to put my stuff in storage up at their place. This will save me significant $$ getting my stuff out of my storage unit. Even better, my stepdad and sis-in-law came over, drove to my unit and packed up everything. I didn't have to do anything! Can't beat that with a stick. Plus my sis-in-law brought me pumpkin bread. I mean really, that kinda rocked. I appreciate them doing that for me. Let's face it, I'm not rolling around in extra cash around here.

Another wonderful thing in our lives, my friends are working on a benefit for Colby and me. There's a committee of 5 or 6 of my girlie friends pulling this together. They're putting together a whole day of events. Plans are still being made, but here's what I know for sure: Saturday, November 19th at the Sellersburg Moose Lodge (of course, where else would it be?!) Early in the day there will be vendors having a Christmas bazaar. Later on that evening there will be a silent auction and 2 or 3 bands playing. They just up and started planning it. Means a lot to me. I've been blessed with the bestest buddies on the planet.

Told you I was chatty tonight. Guess I've just got some nervous energy. Heck, I'm half afraid to go to sleep. What will break or explode next around here? Not much left, haha. I'll keep you posted. This crappiness has to turn around at some point. We're ready! Bring on the happy, happy sunshiny, no worry days, and hurry the heck up, lol. Nitey nite.

AND THEN THERE WAS NONE

Remember the great, fabulous, promising new nurse I trained on Wednesday? Remember how excited I was that she's coming this weekend to get more training and help me with Colby? She's to be here 6 hours on Saturday and 6 hours on Sunday. Well guess what, she's not coming. Yep, you heard it here first. Colby is out 12 hours of nursing this weekend. Is this my fault because I didn't turn in the proper paperwork in a timely manner? Noooooooo. Is this the nurse's fault that she is irresponsible, a schmuck or just up and quit? Nooooooo. This time around the fault lies with the nursing agency. Ah yes, that wonderful bunch of clowns I'm forced to deal with in order to get the nursing services I need for Colby. They don't have all her new hire paperwork done so I guess she's not allowed to come here or work for them just yet. So why in the hell did they send her out here to do orientation/training in the first place?! I think that's a legitimate question. I should have known better than to get my hopes up. NOTHING surprises me anymore when it comes to NOT getting the nursing care Colby needs. It's such a fucking joke, only I'm not laughing.

So what's my good, bright, sunshiny news for the day? I don't have any!! I'm in a pissy mood, which I think is most deserving. Well, I didn't crush anyone's foot with Colby's wheelchair, guess that's a plus. Screw it, going to bed.

NEVER A DULL MOMENT

So what fun, witty Russ anecdotes do I have to report today? I've got a couple. THANK YOU, Bonnie, for driving and taking me to my ENT appointment. Got my stitches out, scar looks pretty good. Dr just used the same scar from the 1st surgery. Dr told me there was no cancer in the right side of my thyroid. Bonnie was like, hey, that's great news. But you know, it never dawned on me that there might be. I just always assumed removing the right side was preventative. I never thought for 1 second there were cancer cells on the right side. Yep, still hanging around Denialtown. The ENT will set up an appt for me with an endocrinologist. I may not have to have the radioactive crap done, which would suit me just fine. Then all this stupid thyroid stuff will be done and over with.

Colby's speech therapist came over and worked her magic. The eye gaze is working again. She has also been helping my technologically-challenged brain with some pointers on Colby's iPad. We put a Spongebob app on it. Colby is fascinated with it already. I'll be hearing the noise from that app in my sleep tonight.

Mom watched Colby while I went to the dr, then stayed around and helped me get some stuff done. I decided Colby needed to sit up in his chair for a while, so we used the Hoyer lift. Things were going just fine, Colby was in his chair and we were trying to take the sling off. Some moron (okay it was me) left the wheelchair on. Mom was trying to get the sling off and accidentally bumped the back drive button. Then the chair proceeded to run over her foot and catch her ankle between the chair and the wall. Yeah, good stuff. I was about to shit my drawers. She says her foot and ankle are okay, but I don't know. Looked pretty darn painful to me. I felt awful that it happened. I'm so tired of not being able to pick Colby up. A couple more days and then we're done with this lifting restriction crap.

Then we take Colby in the living room. He's sitting up just in a white t-shirt and diaper because the bath aide was going to be here at 3:00 for his bath. Why get him dressed for a couple hours, right? Then Mom says, "uh Amy, there's a priest walking down the ramp." Craaaaaap! I totally forgot Fr. Jeff was coming over today. Is it written on my calendar, yes. Did I bother to look at my calendar today, no. He's new to the Cathedral and is getting out meeting parishioners. I've known about this for 2 weeks now. I said hey, come on in, the apartment is a mess and my kid is sitting around in his diaper. How lovely. I'm sure we made a fabulous 1st impression. Then I started telling him about Colby's 39-day hospital stay, then about my thyroid surgeries, then about my nursing issues. I bet he couldn't wait to get out of here. Think he'll invite himself back any time in the next year or 2 or 20?!

It's NEVER a dull moment around here as you can tell. Need to go hook up Colby's feeding pump for the night. Nitey nite everyone. TGIF is around the corner!