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.