HERE YA GO

Let's see here. The apartment is halfway cleaned and straightened. Laundry is pretty much caught up. Colby is in bed and better be in there sleeping, the big stinker. I'm not in the mood to sort through mail and bills. So what's a mama to do? Blog of course!

Seems we're on the upswing around here. Colby has been doing much better lately (smiley face, thumbs up, sigh of relief, shouting yee-haw). I don't know if he needed a few extra days to get over that sinus infection, or if it was the little changes we've been making in his routine over the last couple of weeks. My guess is both, but I really don't give 2 flying farts, as long as he's better. Check out his numbers last night (see pic). It's been a long time since his heart rate has been that low when sleeping. He's been doing some cute stuff on his eye gaze (well of course he has been). For some reason he's been looking at the bottom row a lot. He's never really done that much before. Keeps saying "yum, yum" what the heck is up with that? Also saying silly stuff like "late". Sometimes, though, he does look at that thing with absolute purpose. We were working with him this past Friday and he said, "we should…stop". Yeah, I think that was VERY intentional. Then he kept saying "wet, wet." We couldn't figure out why, then realized his washrag had moved and he had slobbered all down the front of his t-shirt. It was all WET. You can call it coincidence if you want, but to me it's clearly another shining example of his genius. He mixed it up over the weekend. He was doing eye gaze and after about half an hour said, "should we stop…stop". Today in speech therapy he immediately chose it was February and Tuesday. See, genius!

I've been feeling great the last couple of days. I've had no dizziness. I have energy, which is a nice change. My sore throat is gone. My mom and stepdad will be soon and I'm very excited about that. Geez, they've only been gone since November! Now I need some new motivation and get some more of this weight off. I've lost and kept off about 10 pounds, but still have over another 10 to go. A good start would probably be going in the kitchen and throwing away those Girl Scout cookies before they all end up in my face. Well now, let's don't get drastic, right? I worked at the hospital Monday, also working tomorrow. I realized while there on Monday I'm probably more OCD than I like to admit. I dumped out 150 Tums to pack and loaded them in the following order: all the green ones first, then yellow, then pink, then orange. I just couldn't help it. That's messed up. It makes absolutely no difference which color gets packed next, just get the damn things packed. Oh boy.

Bought some tunes for my iPod tonight. Haven't bought any new music in quite a while. Picked a bunch of different stuff including Gavin DeGraw, Heart, Conway Twitty and many others. I've been getting the itch to go to a concert soon. Really wanted to go see Miranda Lambert, but tickets are more than I wanted to spend right now. Guess you can charge what you want when you're Female Vocalist of the Year, huh?

And let's just take a moment to talk about my INDIANA HOOSIERS!! This year they've beat the #1 team, #2 team and now the #5 team. Love it, love it, love it. Of course they played like absolute crap the night I went to go see them, but that's how it goes I suppose.

I've been trying to get to bed earlier. Didn't work out so well tonight, but I knew you all were just dying to get an update. Toodles.

THURSDAY'S THINKING

Okay, before I forget, I have the results of my thyroid scan. Actually they called me on Monday and I just keep forgetting to mention it. Everything is fine. J They said the "activity" they saw in my thyroid was expected. The iodine will continue to work to destroy the cells. I said so what does that mean? Is the iodine working to kill the thyroid cells or the cancer cells? The nurse said and/or. So I guess they consider any remaining thyroid cells to be potentially cancerous. But again, the scan showed exactly what they were expecting and I don't have to go for another scan for 6 months. They said the scan was "normal". Ha, been a long time since anybody has called me that! So I don't have to worry about that mess for a while.

I went to school with Colby today. He had a great day! While at school he drove his chair a bit, worked on eye gaze. Normal school stuff. He got really tired tonight and while I was putting him to bed his numbers got out of whack, but overall I would say he had a good day. He was super sleepy tired though by the time I got him in bed. Think I'm going to start getting him to bed a little earlier. Still working on some other ideas on how to prevent these drops in oxygen/spikes in heart rate. Guess it's just a work in progress.

My throat is on fire and if I stick out my tongue and look in the mirror, I can see blisters on the back of my tongue. So I'm assuming it's strep? How in the hell did I get strep when I was in isolation for practically a week?! Leave it to me. I don't have other symptoms really. Except I did sneeze twice today, and trust me, that's not easy on a sore throat. I'm a little achy but heck, that could just be because I'm tired/fatigued or all these freakin' changes in the weather. For the most part it's just the sore throat. Started a dose of Amoxicillin today in the hopes to nip this crap in the bud. Hoping, praying that Colby stays well. I would lose what little mind I have left if he gets sick again.

It has been a heck of a busy week. I'm working tomorrow and keep telling myself, just hang on until Friday at 2:00. You can do this. We scheduled Wine Night tomorrow night, but I won't be able to go. Not only am I sick, but my babysitter went to the doctor today, too, and got put on a bunch of meds. That's a bummer, dude. Over the weekend I'd like to sleep, rest, nap, take a siesta, snooze, lie down for a bit, get to bed early and all around do nothing I don't have to do. In the next couple of days, I promise I'll find something else to blog about besides pulse/ox numbers, thyroid scans, SMA, medical stuff and any other icky crap. I'll think of something fun to blog about, even if I have to make it up as I go.

Well, the Nyquil is kicking in so I better hit the sack. That alarm clock will be ringing in my ear before I know it.

THIS WILL PROBABLY MAKE NO SENSE

I just took a big old capful of Theraflu, so if I end this blog in mid-sentence, don't be surprised. I'm fighting off a sore throat. But I haven't been dizzy for a couple days now, woot woot.

Yesterday Colby had one of his best days in quite a while. Today was so-so. Talked to the nutritionist at Cincy and we're making changes to Colby's diet, actually just adding a bunch of extra water. Adding it gradually over the next few weeks to his overnight continuous feeds. Toying with the idea of maybe, and I said maybe, trying Botox injections for Colby. They would inject the Botox into his salivary glands to help control Colby's slobber/secretions. I said MAYBE. Probably won't. Well, I don't know really. Need to do some more research and talk to some other SMA families. Man, you can NEVER say NEVER. I swore up one side and back down the other I would NEVER give Colby this treatment, now here I am halfway sort of considering it.

Today was Fat Tuesday. Did you take advantage of the decadence, gluttony and partying allowed on this day? I had donuts for breakfast and some of my yummy delicious muffaletta for supper. Does that count? No parades. No beads. Just delicious, fattening foods.

Yeah, that about wraps it up for now. Just chipping away at these ideas trying to get Colby back to his baseline abilities. High heart rate or not, that little crap head gets cuter and sweeter every single day. I ate my weight in carbs today and tomorrow I'm working at the hospital while Colby is at school. The End.

I NEED CHOCOLATE - OR MAYBE ALCOHOL

Ah heck, let me make it easy on you and let's go for a combo. Just give me a chilled bottle of Bailey's and a straw. That might get me through tomorrow, or at least through lunchtime!

I woke up today and no dizziness. Yay! I've had a productive day, which you know I love. I went to Mass and Kroger while Colby's dad was here visiting with him. I think that's the first time I've been to Mass so far in 2012. The new priest is growing on me. I enjoyed his homily today. Colby's grandpa came over for a visit. Made him a batch of Rice Krispie treats for his birthday. One of my gal pals came over and helped me decide how to rearrange the furniture in my room. Yesterday I did 5 loads of laundry, but who's counting, and today I got the apartment "straightened up." So tomorrow when Colby is at school I'm going to clean, clean, clean. Can't wait to give this place a good scrubbing.

Colby had a decent day today. Better through the day than yesterday, but his night last night was not fun at all! His oxygen alarm kept going off with his oxygen dipping down to 89/88. His alarm would go off, it would scare the be-geebies out of me. I'd get up and by the time I'd get in his room, his oxygen would be back up to 92/93. This went on and on throughout the night. I tried everything to fix it. I'd turn his head over. Reposition him. Reposition the mask. Check the tubing and connections. Finally at 4:30 a.m. I said screw this. I went and got his nasal prong mask and he used that for a couple of hours. So frustrating because he was using his brand new mask. I went ahead and changed his bi-pap settings for tonight. I figured what could it hurt? Praying we don't have another night like last night.

So I have to ask, Indiana, just what in the hell was that monstrosity of a basketball game today? Good Lord it was awful. I couldn't even watch the 2nd half. I think it's safe to say my Hoosiers played "for shit" today. Moving on.

Started working on my muffaletta for Mardi Gras. I had never heard of this sandwich until a few years ago when I worked at Humana. One of my co-workers was always bringing in food, and man, she was an excellent cook. This sandwich takes 2 days to make, but it will be soooo worth it. You make this relish kind of stuff with black and green olives, roasted red peppers and pepperoncini. Soak that in olive oil and spices for a day. That's where I am now. I'll tell you the rest tomorrow. I haven't made a muffaletta in years and man, I can't wait to pig out on Tuesday.

Well shit. I hear Colby's alarm going off back there. Here we go again! Okay, I'll wrap this up now and go tend to Kid. On second thought, make it 2 bottles of Bailey's. I'm gonna need them.

HERE IS TODAY'S CRAZINESS - ENJOY

I wish I had something fun, whimsical and carefree to talk about, but I really don't. It's kinda been a "for shit" sort of day. Not over the top "for shit" just a tiny bit "for shit". Oh yeah, if you're offended by cuss words, then stay off my blog, just sayin'.

I had problems with dizziness today, really bad dizziness, which I just don't get. I've been taking my thyroid medication. I thought that might be the problem. Plus it's not all the time, just every now and then, like today. IDK what's up with that, but I'm not digging it one little bit. Yeah, yeah, go ahead and say it, Amy, we always knew you were a dizzy broad! You know you were thinking it.

Then there's Colby. Colby, sweet Colby. What in the hell is going on with this kid?! He did not have the best of days today. One day he's a little better, the next day his numbers are out of whack again. Like I've said before, he's not sick enough to take out of school, drive him up to Cincinnati to a germy hospital for observation. They would probably say, well, uh, we don't really know what's wrong with him either. I have a hunch it's just something little. I have some ideas and now it's time to trial and error them one by one and see if anything helps. First is nutrition. In seeing what other SMA kiddos' intake is, it would seem Colby's overall fluid/volume for his feedings is off, way off. Not really sure how this happened since he's followed by 2 nutritionists. So that is something we'll address next week. Also hoping this new bi-pap mask will help. Colby's heart rate used to drop in the 60's when he was sleeping, but not any more. It's more like high 70's, low 80's. If it's not the bi-pap mask, then maybe it's the bi-pap settings. He had a sleep study done back in the fall and they changed his settings. Maybe there's a problem there. I'm also not convinced the cyst on his rib isn't an issue. Think about it. Rib = lung = respiratory. What is Colby's main issue/problem? His respiratory status. I don't know how much experience the ortho dr we took him to on Thursday has with SMA patients. I'm not saying he's a bad doctor, just saying with SMA, so many aspects need to be considered. You constantly have to look at "the big SMA picture" and so many issues affect so many other issues. It's enough to drive you ape shit crazy. Yep, I'd say I'm pretty much there right now.

Okay, let's move on. If I think about this crap any more, my head will explode. So I was watching Pop Up Videos the other day on VH1. Yes, I admit it, I love it when those goofy little bubbles pop up. I can't remember the song, but the bubbles started talking about being single or single women, something like that. It showed a statistic that said the average single woman goes on 4 dates a year. I thought to myself, dang, what a ho bag, haha! I had to make sure I read it correctly, because in my case it should have read 1 date in 4 years, not the other way around. Okay, my social life isn't quite that bad, but I did find that statistic very, let's just say…off, for my circumstances.

Finally watched The Help a couple days ago. Loved it. Been working on my Terrible Awful list, hehe. It seems to grow longer with each passing day. It's hard to believe someone would judge someone else just because their skin is a different color. I just don't get that. I size someone up based on their kindness, integrity, humor, selflessness. I certainly don't want someone looking at me and thinking well, she can't make good decisions because she's a hormonal woman, or she must be dumb because of my heavy country accent. And I REALLY can't believe that such hate and racism so blatantly existed just 50 years ago, not 150 years ago!

I do want to end this blog on a good note. So let me say THANK YOU to everyone who stayed in touch and kept me somewhat sane during my time away from home. My family and friends were so wonderful to me. They called often, sent texts, offered to do whatever they could to help. I have such AMAZING people in my life. If it weren't for you all, I honestly don't know what I'd do. There's no way Colby and I could get through this stinkass SMA journey without you. God has chosen each of you to have a special purpose in my life, and please know that you each hold a special place in my heart, too. You have friends like that, right? Like I have one friend I go to Mass with and who is our travelling buddy. I have one friend I party with a little more than the others, although we haven't seen each other in a month of Sundays. I have one friend I consider "Ole Reliable" because we will be friends until we're old, flabby, have no teeth and are stepping on our boobs. I have another friend, the Pizza King fairy. We lost touch for years but have vowed to never do that again. I consider a couple of Colby's therapists friends. They've been with us for a long time now and they were great to stay in touch during my "solitary confinement". Then there's my Wine Night gals. Sometimes that's the only time we are able to see or talk to each other. My aunt and I are like best pals, we text almost daily. She's so awesomely awesome. I have SMA mommy friends whom I adore. They've been there, done that, and all speak SMA fluently. And hands down I have the best parents on the planet. Lord knows we'd be up Shit Creek without a paddle without them. I have several other friends I think of often. Haven't seen or talked to them in a while. Not on purpose, life just gets in the way sometimes. So listen up gals, I'll be getting in touch soon and we'll do lunch, or brunch, or dinner, or you can just come over and visit. Gots to have my gal pals around or I get really lonely, really quickly. And we can't be having that!

I've rambled on enough for tonight. This sleepy chick is going to bed. Can't wait to see what fun and excitement tomorrow will bring!

SCAN AND WAIT, SCAN AND WAIT

Took Colby to Cincy yesterday and had his rib cyst further examined. Ortho wanted a CT scan done. They called today with the results, which showed nothing needs to be done at this time. Amen, hallelujah, thank goodness, so very glad to hear that. Ortho recommended just keeping an eye on it. We'll have it x-rayed and looked at again in a few months, probably in June when we go up for other followup appointments.

I had my full body scan done today. They'll call in a couple days with the results. Nothing to it, heck, I even fell asleep. Thank you to my pal Kim who recommended I take my iPod. I never would have thought to do that, and yes, they let me listen to it during the scan. Must have helped lull me to sleep haha.

Colby went to school today, the only day for this week. His nurse said he did well. He was able to tolerate being off his bi-pap some, but I think he has a long way to go before he's back to baseline. There is something going on with him, besides this recent sinus infection, and now I gotta figure out what it is. He wore his new IU hat to school (they won again last night, you know) but I didn't get a chance to take a pic. I will soon though and will post it. He just looks so darn cute in it.

Colby is sleeping in the big bed with Mama tonight. I asked him twice, yes or no, if he wanted to sleep w/Mama. Both times he said yes. Smiley face. Okay, off to get ready for bed/snuggle time. The best part of my whole day. More tomorrow, now that I have my computer up and running again at home.

TICK-TOCK - COME ON CLOCK, MOVE FASTER

Only about 13 hours left and I'm heading home. Can't wait! Wish I could just go to sleep right now and poof. I'd wake up and it would be 1:00 p.m. Tuesday and I would be at the apartment with my sweet boy. I'm actually kind of proud of how I've handled being away from Colby. Okay, there was that 1 complete meltdown, but that was only because of the not-having-internet fiasco. Once that was resolved, I've done fairly well (don't you think). I'm VERY proud of Mr. Colby. I hear he's doing quite well, the antibiotic must be working thank goodness. He's taking longer, more frequent bi-pap breaks. I Skyped with him twice today. It was great to see that 1-toothed face and hear those jabbers of his. He'll only be in school 1 day this week. He actually didn't have school today because of parent/teacher conferences. I wasn't comfortable letting someone else get him up and ready for school (it's not an easy job you know) so I decided to just keep him home tomorrow. Wednesday is his Cincy appointment, but as long as he's feeling okay, I'll send him to school Thursday.

I stayed up late last night and watched a movie, Country Strong, so I slept in this morning. My dad came over and got the van, took it to get the oil changed, check the tires, etc, so we'll be ready for the upcoming Cincy trip. I haven't really done much else today. Finished reading The Help. Can't wait to see the movie. Started working on my taxes, boring. Did the last load of laundry I brought over here, even more boring. Got some stuff already packed and in the Terd. I have tomorrow all planned out. #1 - Sleep as late as I can, although I'm sure I'll be chomping at the bit to get up and out of here. #2 - Pack up the rest of my stuff. #3 - Shower and get dressed. Hmmm, which sweats shall I wear, the black or the gray, decisions, decisions. #4 - At 12:00 p.m., call Pizza King to order a small, extra cheese, sausage and mushroom pizza for carryout. #5 - 12:15 p.m. - Pick up pizza deliciousness. #6 - Get home around 12:30, bridge traffic pending. My friend Kim is going to come over and help me unload the van so I can get inside and get to loving on the kid of mine! At 3:00 his bath aide will be there so we can get him cleaned up. That's as far as I've gotten so far. And of course I have to give my valentine his present (an IU hat and a new Spongebob movie).

There you have it, today and tomorrow summed up in 2 extremely mundane paragraphs. I'm starting to get really worried about this cyst on Colby's rib and his appointment on Wednesday. Can't believe it's finally here. I hate meeting new doctors. If you have a little extra time or energy, could you throw up a prayer to the Big Guy that things turn out okay on this and the cyst is nothing to worry about? Honestly, I think the bad medical news in our home just needs to take a rest for a while. A long while, please and thank you. Okay, time to get some sleep. We're going to be very busy the next few days.