UPDATE FROM OUR HUMBLE ABODE

Got smart tonight, already have the dishwasher running. Tonight I'm listening to the retro R&B channel. At the moment a James Brown song is on. I'm diggin' the funkiness.

Colby went to school today and did just fine. Do I have a cute eye gaze story to share? Of course I do. Okay, there's a not-so-funny part, too. When Colby didn't get to do what he wanted to do on the eye gaze, he started crying. I've had several talks with him about not crying at school. I told him if something hurts or you're uncomfortable, it's okay to cry. But if you're crying because you're not getting your way, that's unacceptable. The way I hear it, Amber (speech therapist extraordinaire) was asking Colby to tell her if his classmates were or weren't at school. He obviously didn't want to do this, as he kept going back to the TV remote page (of course) or the crazy hello page (the fun stuff.) Amber kept saying no, it's time to work on school stuff while here at school. Eventually Colby said "I am mad." Then after that he said "boring" and shortly after that said "goodbye." Yep, that's my 9-year-old! His nurse told me that today and I just shook my head and laughed. What else you gonna do?

I've done some fun stuff lately, along with some not-so-fun stuff also. My brother, dad and I went to the IU/Minnesota game a couple weeks ago. I don't think I've been to IU since I went to school there many moons ago. Even though IU lost (sigh) I loved every second of it. The weather was freezing-ass cold that night, but we managed. I'm chomping at the bit to go again. Also went to see the Civil Wars in concert. Just a man, a woman, a guitar and sometimes a piano. The harmony of their voices was incredible. It was, in 2 words, awesomely awesome! My friend Joni and I had a great time that night. Of course having a DD always helps add fun to any festivity. We were supposed to have Wine Night last Friday but we cancelled at the last minute because they were calling for bad weather, ice, freezing rain, etc. And what happened? Nothing, absolutely nothing! I never pay attention to the weather. I only knew because other people called or texted me about it. I despise meteorologists. They're WRONG, all the freakin' time. Must be nice to f up at your job all the time and not get in trouble. Saw Fiddler on the Roof this past Sunday with my buddy Judy. It was a fantastic show, but I swear I don't remember that play being so long. If I'm not mistaken, Wicked is coming in September, you know, the month of my birthday. Hint, hint. Might just have to start saving my pennies for that show, too.

Got up off my sad, sorry butt last weekend and finally cleaned out the hall closet. I've only been meaning to do that for oh, about 6 months now. Hauled 2 bags of trash to the dumpster and have 2 boxes ready to go to Goodwill. Love it! Been working on redecorating my bathroom, too. Had to leave the wallpaper of course, being in an apartment, but I have a new shower curtain, rugs, towels, knick-knacks, etc. I really, really like it. Our bedrooms are next. First on the list, take the Spongebob border off my bedroom walls. But it's been such a conversation piece over the last year. Not that tons of people have been in my bedroom over the last year. It's just that you can see in my bedroom as you walk down the hall, just sayin. Second on the list, storage, storage, storage.

The not-so-fun part of this month has been dealing with the next step of this stupid thyroid mess. Went to the radiology oncologist and we've scheduled my radioactive iodine treatment for next month. I don't think the treatment itself is that bad, just take a pill. The sucky part is that I'll be giving off radiation for several days after the treatment. There's a whole list of rules to follow, most important keeping distance (6 feet to be exact) away from small children. As my doctor put it, "and 6 feet means 6 feet." So yep, I'll have to be away from Colby for a few days. I'm in the process of talking to Colby about it. Also trying to get nursing hours approved and talking to my nurses and sitters. Hopefully I'll have the schedule worked out by the end of the week. I just want this crap over with. So who do you think being apart will be harder on, Colby or me?! I'll report more about this mess as it develops.

Time to call it a night. Colby has school tomorrow so it's up early. Then after that we'll have a nice long 3 day break to sleep in, take it easy, have pj days, cuddle on the couch, etc. Looking forward to it. Bonne nuit, peeps.

HERE I AM - MISS ME?!

Just got kid to bed and my choices were do the dishes or blog. So ta-da, here I am. I've got GAC on, watching Ronnie Milsap, Loretta Lynn and others sing gospel songs on the Grand Ole Opry. Yeah, that's just how country I am, and I'm dang proud of it.

I'm sure everyone is chomping at the bit to hear all about the excitement in our lives lately. Well, this won't take long, ha! Colby is having a good stretch. He's had a couple rough days at school, having trouble sitting up in his wheelchair, a few oxygen drops. But they're sporadic and overall he's doing great. Still working on the eye gaze. Our goal is to eventually have it in front of him almost all the time. It's a gradual thing. He used to cry when you put it in front of him and now he doesn't. Progress! You can see his intentional choices (sometimes). He has the placement of certain squares/choices memorized, which is most impressive. Progress! No dr. appts for him this month. Next month is his ortho appointment for that cyst on his rib. Can't wait to see what that might entail. Then in March he has appts for the dentist and ophthalmology in Cincy. I also need to call and make him an appointment at The Brace Shop in Cincy for new AFOs (ankle foot orthotics) and a back brace. That kid is growing like crazy. Finally got another suction machine. Insurance covers 2 and his backup was sucking (or actually not sucking haha) so we had to get another one. Also had to track down a carrying case for his portable suction. After 2 e-mails and 7 phone calls, found it, ordered it and hopefully it will be shipped this week. I'm just hoping he has a good day at school tomorrow. Monday was a little rocky so I kept him home today. He did fine. Maybe he just needed a Mama day. That's fine with me, because I certainly enjoyed my Colby day, too. So off to school tomorrow he shall go. Still loving the new nurse, Sheri. She's a joy to work with and takes excellent care of Colby and all his equipment.

Okay, I'm not going to lie, I'm tired. Since it doesn't look like those dishes have jumped into the dishwasher by themselves, I'm going to cut this short tonight. Wanted everyone to know that yes, we're still chugging along. I'll update on what's new with me tomorrow night. For all of those who keep in contact with us, thank you so much. Living in Louisville is hard sometimes, as most of my family and friends are in Indiana. Gets kind of lonely around here, so keeping in touch means a lot to me. I should do better to return the favor! Bye for now.

I'M IN THE FOULEST OF FOUL MOODS

Why? I'm not really sure, I just am. Been that way for a few days actually. I think it's because it's 10 days into the new year and I'm as behind and overwhelmed as always. This was going to be the year I didn't feel like this any more, dangit! The kitchen sink overflowed over the weekend. Had to take everything out from under. It's all still sitting in the kitchen and dining area. Christmas decorations are down, but all the big plastic totes are in the living room, too. I have 4 loads of sorted dirty laundry on my bedroom floor. Blah, blah, blah. When Colby goes to school on Thursday, my butt is staying home to get this place shaped up a little. Went to see the radiology oncologist today. That sucked, as I knew it would. But as they say, this too shall pass. Tomorrow is another day. It'll get better (hopefully). Actually I don't know about that. I think it's supposed to be pouring rain in the morning, and you all know how much I love getting Colby loaded on the school bus in the rain. Ah yes, good times running amuck around here.

But all in all, you know me, always the optimist. I do have good things to talk about, too. I've picked up some extra hours working at the hospital. That's always good on the wallet. I finally went and bought that Keuring single-serve coffee maker I've been wanting for 2 years. Did I NEED it? No. Did I WANT it? Yes. So by golly I bought it and I don't feel guilty about it one bit. Okay, maybe a little guilty but too late now, I aint' taking it back, haha! Don't be thinking that just because I don't blog about my daily thankfulness, that I've forgotten about it. I know I have much to be thankful for in spite of being kind of pissy the last few days. I couldn't be happier with Colby's new nurse. She is very good with him and is reliable, easy to work with and very sweet. One door closes, another one opens I suppose. And really, what does it matter that I have Christmas boxes in the floor and my tub is dirty? Do you care? Do you think less of me as a person if my apartment is junky right now? Probably not. If you do care, then you're probably not really someone I need to be having over here anyways.

I do have a couple Colby eye gaze stories to share. Over the weekend, he was up in his chair using his eye gaze system and I was taking ornaments off the tree. I heard him say "very good". I went over, kissed him on the forehead and told him yes, he was doing very good on his eye gaze. Without missing a beat, he looked at his eye gaze and said "thank". I just know he was telling me thanks or thank you. OMGosh, I lost it. Had to leave the room I was crying so hard. So impressed. So proud. So thankful. Do you know how long I've waited to have Colby respond back to something I've said to him? A long damn time. Today in school he got really ticked because he kept choosing the TV remote page, then his speech therapist kept telling him no, Colby, it's not time to watch TV. It's time to work at school, not watch Spongebob. Well, I don't think he liked that much. He looked at his eye gaze and said "enough computer". That's my stinker! Can't wait for more of his personality to come through as he learns more on the eye gaze. My guess he's full of P and V, much like his mama!

Better wrap this up. It's getting late and I have a new coffee pot to hook up before going to bed. Yeah, baby!

MY KID ROCKS, BUT THAT'S NOTHING NEW

If you don't like to read blogs where people yammer on and on about how fabulous and cool their kids are, then I suggest you skip this post. Colby had a great 1st week back to school after break! His PT came on Monday. She took this Aquaplast stuff and fixed Colby a little "ledge" to hold the turning switch on this power chair (right hand.) I think it's working better than the other way it was rigged up. Seems we're ALWAYS fine tuning something on that chair. It was warm enough here today to get him out for a while and let him drive around the parking lot. Yep, he went for the speed bumps, and for a couple of parked vehicles too. Don't know what it's going to take so that kid stops or turns before running into something. Only time will tell on that I suppose, but overall he did a nice job on driving.

He's been doing some really cool stuff on his eye gaze. Progress, love it! At school the other day, he told his speech therapist he was "bored." Then someone came up to Colby and was talking to him, fussing over him, kissing on his hand, and he said with his eye gaze, "please, stop, please, please." Now that's freakin' funny. And this is the coolest, he made a 4-word sentence, "I want Spongebob please." Then his nurse told me this: his eye gaze was hooked up and his nurse was driving his chair down the hall. They were getting ready to turn the corner and go into the classroom and Colby looked at his eye gaze and said, "I turn." Seriously, can you believe that? I asked his nurse if she was sure that's what she said and she said yes. Oh my, I'm just busting with pride. Maybe, just MAYBE after all this time, this eye gaze stuff is finally clicking with Colby.

We got his school pictures back this week (see pic.) Isn't he adorable? He has the most beautiful big, brown eyes. Got that wild faux hawk hairdo going on. And that 1 big shiny tooth up front (thanks again Kosair.) And behind that 1 big shiny tooth you will see a blue tongue. Yep, blue. Obviously it must've been give Colby a sucker while at school day along with picture day.

I've been pretty darn busy. Was able to pick up some extra hours at the hospital. I'm proud to say it's day 6 of the new year and I've done 6 days of Bible readings, so far so good with that goal. I've been working diligently to K.I.S.S. The Christmas decorations are down except for the tree, and that'll get done tomorrow. I went through every single decoration and down sized, right down to the tissue paper and name tags. Goodwill is going to love me next week. Went from 5 plastic tubs of stuff down to 3. Yep, that's how I roll. Gettin' rid of the clutter, and loving it.

People have been asking me about the magazine article with Colby's article. OMGoodness, it's fabulous! Maggie did a great job! Colby's story has 12 pictures over 7 pages. I've looked at it like 20 times. The name of the magazine is THIS…is Louisville. It's a free publication and is being distributed at many locations here in Louisville. Maggie was also interviewed by LEO magazine and by a local radio station. She even gave SMA a shout out in the LEO interview. Here is the link to read that: http://leoweekly.com/ae/art-louisville. The magazine is not available online yet, but you can "like" THIS… on Facebook to get updates, or got to thisislouisville.blogspot.com or @thisisLOUville. And if you really, really want a copy and can't get to Louisville to get it, let me know and I'll mail you one. I have several I need to mail to family.

Okay, going to bed. Need to get rested in order to tackle that Christmas tree tomorrow. Have a good weekend everyone.

2012 - LOOKING FORWARD

So I don't really do New Year's resolutions per se, but I do try to think of some goals for the upcoming year. Last year's was a complete bust (the house thing) so maybe I'll do better this year. Here's what I've come up with so far:

K.I.S.S. - Want to simplify my life in any way possible. Time to get back to de-cluttering and reorganizing around here. Need to take a good look around and see how I can better arrange furniture, store items, get rid of crap, etc. Actually I stink at that kind of stuff so I'm going to call on my crafty, DIY network watching buddies to assist. Also I have a bunch of stuff in storage at my dad's. It's been there since we moved 5 years ago. I'm thinking if I haven't needed it yet, I'm not going to need it ever. Unless it's something sentimental that needs to stay in the family, it's going bye-bye. Also need to keep in mind a simple piece of advice I got from my mama. She was over here one day and I was ranting, raving, bitching about something someone had said, done or not done (probably a man, just sayin') and she told me something I'll never forget. She said, "Amy, honey, you can't control what other people do or say. All you can control is how you react to their actions." Wow, such a simple statement but I've never heard anything more true or profound. How is it she's always right?!

Less texting, more calling. Sometimes you just need to hear the person's voice to really stay in touch. Texting is at times easier and even necessary, but I'll admit sometimes I do it just because I'm lazy.

I want to expand my music library. Want to find some different stuff, not just stuff you hear on the radio all the time. I like all types of music, as long as it has words, haha. I'm open to suggestions.

I have to chuckle as I type this one, finish reading the Bible. Hmmm, let's see, my original plan was to read the Old Testament in year 1, then the New Testament in year 2. Well, it's year 3 now and I'm only on Jeremiah, Chapter 12. But I'm really, really going to make an effort to complete this goal. Okay, I'm already a couple days behind, but as soon as I'm done blogging I'm going to hit the good book.

Although maybe a house is not in our near future, I'm afraid maybe a van is. It's actually not the Terdmobile. She'll run until she drops I'm sure, but rather the lift that has me worried. That lift was donated to us years ago and we've already had the hydraulics replaced once (not cheap.) I just don't like the way it's acting lately. Plus Colby has grown so much, if you don't tilt him back just so, either his feet get caught in the front or his head scrapes the top of the van when loading him into the van. Neither is good! Blah, I don't even want to think about getting another van, but I may not have a choice. More on that later.

Don't know exactly what to do, but I want to pay some of the generosity we've been given forward to others. Even though our financial resources are limited around here, that's okay. There are many other ways to help others besides giving a monetary donation. The Cathedral has a dining hall, I could help feed the homeless. I could go visit someone in a nursing home. Sadly, many of the elderly in nursing homes don't get visitors. Maybe Colby and I could be pen pals to a military unit overseas. I'll figure out something, it'll come to me. Colby and I are blessed to have so many loving family, friends, heck, even strangers who have reached out to help us over the years. It really is humbling. It's only right that I try to help someone, give them something to smile about, just like all of you have done for us time and time again.

I'm going to be complete honest here, I don't want to send Colby back to school tomorrow, or the rest of January as far as that goes. Just want him to stay home with Mama. We can sleep in, hang out in our pj's, work on his eye gaze, cuddle up on the couch and watch TV, eat candy canes, read books, just BE together. Christmas break was too short, dangit. I'll miss my sweet boy! Like it matters. I'm working at the hospital so I won't be home anyways. We'll be able to do all that stuff on Friday. Can't wait.

Off to hook up Colby's feeding pump then hitting the sack. Should be in bed tonight before 11:00, impressive. Nighty-night all.

2011 - LOOKING BACK

2011 - THUMBS DOWN SUCKY STUFF:

The only goal I had for the year was to buy a house and move out of this apartment. Didn't happen, and if I'm being completely honest with myself, I don't think it's going to happen any time soon. The houses in my price range were fix-it-uppers to say the least. In addition, we need to make a house Colby handicap accessible, costing even more money. Broke my heart not to get that little house on Clark, but can't buy a house that has structural damage and needs costly repairs. Even I'm not that dumb.

Colby's 39-day hospital stay was awful. I still don't know how he got that sick, that quick. Remember he got a front tooth knocked out (thanks Kosair), the daily ups and downs, the infections and the failed extubations? OMG it was a nightmare. Seeing that stupid tube down Colby's throat, his sweet face all taped up and him not being able to jabber was horrible. I can't even imagine what Colby went through during that time. I certainly learned a lot from that hospital stay. I have my "Colby's extubation list" all typed up and ready to go should we ever need it again. Keeping our fingers crossed we won't need it for a very, very long time of course. This hospital stay took a toll on all of us and it took weeks to settle back into any type of "normal" routine around here.

Way too many family members and friends we know are fighting various types of cancer now or lost the battle to cancer in 2011, along with thyroid cancer for me. Cancer sucks just as much as SMA. I freakin' hate you, cancer. You just need to go away and leave everyone I love alone.

The Indianapolis Colts just absolutely stink this year. They've won a whopping 2 games, it's so disappointing. I find it hard to believe that just because 1 player is out, the whole team goes to shit. Yes, I know that Peyton Manning is the team leader for sure, but come on already. Guess the next few years may be those rocky "reforming/regrouping" years. Yuck, those are painful.

2011 - THUMBS UP WONDERFUL STUFF:

Colby attended the SMA family weekend at Center for Courageous Kids in April. He got to ride and groom a horse, ain't he Mr. Bigtime now?! Watching his eyes get as big as saucers and seeing him on top that horse is something I'll treasure forever. Got to visit with other SMA families. We had a great time and I can't wait to take him again. We also attended the Walk-n-Roll for SMA in Cincy. I'm proud to say family and friends contributed over $700 for SMA research.

Colby was approved for eye gaze technology to go along with his existing communication device. This was no easy task, as the eye gaze component cost just as much as the original device. He started using the eye gaze in July and all I can say is wow! I'm very pleased with his progress. His speech therapist is fantastic and none of this would have happened without her. She works very hard with Colby. She sees his potential and that he's a bright kid. He still has a long way to go with it, but he does try and that's all I ask of him right now. Plus some of the stuff he "says" is pretty darn funny. Never a dull moment with that boy, for sure.

My Indiana Hoosiers are doing mighty fine this year. Mighty fine indeed, and it has been a loooooong time coming! So far this year they've only lost 1 game and have beaten both the #1 and #2 ranked teams in the NCAA. This makes Mama very, very happy. Loves me some Jordan Hulls and of course some Coach Crean. I wish the Hoosiers continued success and will be there cheering them on every step of the way. Big Ten Network is the only reason I keep my cable package! Go IU, fight, fight, fight. Hang tough Hoosiers.

After all these years, I'm still overwhelmed by the love and generosity of others to Colby and me. Any time we have had a need, many family and friends have been there to help us. When Colby was in the hospital, so many people sent get well wishes, prayed for us, traveled to Cincinnati to visit, bring us lunch/snacks, books, etc. When I had surgery, many friends offered to cook, run errands, do whatever they could to help. The fundraisers we've had over the last couple of years have been wildly successful, thanks to everyone's hard work and contributions. Raising Colby has a whole lot of challenges, but I never feel completely alone. I know many of you love us, pray for us and will help us any way you can. I'm so blessed and thankful to have such wonderful people in our lives. Please know all you've done for us does NOT go unnoticed or unappreciated.

More tomorrow. Right now I'm tired and want to go spend some quality time with Mr. Pillow.