AND THEN THERE WERE TWO

Colby woke up Tuesday a little gunky. During his IPV and CoughAssist treatments his numbers were a little off. For those of you who don't speak SMA, that means that either his oxygen saturation was dropping or his heart rate was rising. In this case, it was a little of both. I didn't think it was enough to go on full blown Colby-is-getting-sick-and-we-have-to-fix-it-right-now protocol, but my SMA mama antenna were raised. Then when he was at school he had a little bobble, and his oxygen dropped into the 50's. Anything below 90 is cause for concern. Luckily his nurse was able to get him stable without too much trouble. So I decided to keep him home from school yesterday to let him rest and keep a closer eye on him. Also gave him extra cough treatments through the night and day on Wednesday to make sure he was good and clear. That seemed to do the trick. Sent him to school today and he had a great day, thank goodness. So I guess Tuesday was just an off day for him.

I do have some good news to share. Great news actually. Insurance has approved Colby's new power chair, zippidy doo dah! This is a big hurdle to get over. Now we're waiting for Passport approval. That should take 2 to 3 weeks. Then they will be able to order Colby's chair to be made. Wonderful, one less battle to fight! Still haven't heard from insurance on the new CoughAssist machine. Driving me crazy. Come on Cigna, you going to approve it or not? Let's get on with it already.

Colby will be out of school the last week of February. Well, they're built into the school calendar as make-up snow days. So if school gets called off, they'll be used for that. If there are no snow days between now and then, the students will just be out of school. I've scheduled Colby's 2nd round of palmidronate infusions during this time. Just like last time, we're on the schedule, but if the TCC needs the bed, they can boot us out and we'll have to reschedule. I won't know until much closer to the dates if we'll go for sure or not.

So now Colby has 2, yes 2, hermit crabs. (Sigh). I had heard that they do better in pairs. Okay, yeah, sure, hell I don't know. One of Colby's nurses had given us an aquarium. Also bought the crabs some empty shells. Was told you need to keep empty shells in their habitat so they can trade out if they want. Whatev. Sure enough, as soon as I put the empty shells in the aquarium, Colby's original no-name crab crawled out of his Spongebob shell and straight into one of the new shells. I told Colby if the weather was decent tomorrow, we would go to the pet store and he could pick out fish for the fish tank he got at Christmas. Well, it's snowing, windy and supposed to be crazy cold tomorrow, so the fish selection will have to wait. Hermit crabs. Fish. What's next, an iguana?!

Time for me to get to bed. Need to get up in the morning and do some housework before Colbster gets up.

JUST ANOTHER MANIC MONDAY (Remember that song?)

Colby had a busy day today. He went to school, and when he got home his grandpa came over for a visit. Then at 3:15 he had PT. After that, the nurse and I gave him a bath. Today was also a trach change day (scheduled, not emergency, so that's good.) He played with his no-name crab. Watched the U of L game with his nurse. Just got him to bed a few minutes ago.

I was an amazing domestic goddess today. Decided to stay around home and get stuff done while Colby was at school. Did 2 loads of laundry. Worked on the nurses' schedule for February. Made a cake for Colby's physical therapist. Today is her birthday, plus I really like her. She's laid back and easy to work with, so yeah, she gets a cake. Homemade apple cake with cream cheese frosting, topped with glazed pecans. Just sayin! I walked 2 miles. Hey, 2 miles is better than 0 miles I always say. Went through some mail. Made a pot of chili.  

And speaking of which, how do you make and/or eat your chili? Have you ever heard of eating a peanut butter sandwich or peanut butter and crackers with chili? If you have, then you know just how oh-so-yummy-good it is. If you haven't, try it. Do not pass go, do not collect $200, go make you some chili and PB crackers. Then there's the spaghetti vs macaroni debate. I always put elbow macaroni in my chili. Spaghetti is stupid, sloppy and slurpy. The ex and I used to argue about this, as he's a dork and wanted spaghetti in his chili. Macaroni all the way, dorkface.     

So I saw on Facebook that Duck Dynasty's new episodes will be on soon. Shut the front door! And of course it's true because they can't put anything on the internet that isn't true (uh, bonjour.) So, on February 27, don't call my home phone, I won't answer. Don't call or text my cell, it will be turned off. I want to spend the evening soaking up every moment with the ever-funny, ever-bearded, ever-redneck Robertson men. It'll make me so hap-py, hap-py, hap-py.  

When we were giving Colby his bath tonight, I noticed a spot while I was washing his hair. A bald spot I guess. I'm sure it's from the horseshoe pillow he's been using to help his ear sore heal. So now what? It's going to be either an ear sore or a bald spot? Really pisses me off. Sometimes that kid can't win for losing.

It's getting late and I'm going to bed. Hoping tomorrow is as productive as today. I'll be sure to report more of our fascinating happenings soon. See you around like a donut, peeps.

WEEKEND UPDATE, MAMA STYLE

Guess what? Oh forget it, I'll just tell you. Hope you're sitting down. Within the last week we have received both Colby's diapers and his formula! Finally! I mean freakin' fi-nal-ly. I've been dealing with this BS since mid-December. Must have somehow by the grace of all that is good and holy reached the right person, because once I told the chick the problems, she made some calls and Bazinga, deliveries were made within days. About damn time.

Had a turkey taking up space in the freezer, so I thawed it out and baked it. Colby's nurse comes in and says, "Oh, you made all that big turkey just for yourself?" Okay, first thing, nurse, thank you for reminding me that I'm still very single. Secondly, she obviously isn't around here much, because let's face it, this girl can eat. It is getting a little old though. So far I've had turkey on toast with gravy, turkey and noodles, and turkey sandwiches. I'm just about turkeyed out now.

Colby continues to be as cute, adorable, sweet, funny, rotten and a hot mess as always. He was using his eye gaze tonight. Sometimes he'll say or do the same thing over and over, but tonight he was also finding some new buttons. For some reason he keeps saying "favorite e-mail." What up with that? I have no idea what he's trying to say with this. He also said tonight, as well as at school the other day, U of L good, U of L go-go-go. Don't think I wasn't quick to remind him that they have lost their last 3 games. We finally got his school pictures back. They are awesome! I need to get on the ball and print out some copies for everyone. The first ones sucked so badly I had him do retakes. Colby has a field trip coming up and for the first time, I'm vetoing it. They're going to Incredible Dave's and I'm thinking, yeah, I just don't see that happening. Germs. I immediately think of those germ-infested games that would be there. Plus I'm sure they'll be eating there, which is no big deal to Colby since he's g-tube fed. He seldom goes out in public in winter except for school. Have to keep this kid as healthy as possible.   

It's been a great weekend. Had Wine Night Friday, and you know how I love getting together with my girlie friends. Worked half a day Saturday, then went out to lunch with more girlie friends. Last night went out and kicked my heels up a bit. Every now and then you just gotta let loose, you know? A guy from high school is in a local band, so a bunch of us got together to go watch them. Yep, it was pretty wild. And nope, not sharing the pics that prove it. Colby's dad came for his weekly visit, and I headed out to Zumba. Also went to Mass. Just a typical Sunday around here.

Colby's nurse is back there giving him his cough treatment and getting him ready for bed. I'll slide in when she's done for some QT before it's lights out for him. My dad got me "Rising from the Ashes", a book about IU's basketball season last year. I've been reading it to Colby. Don't really know if he wants to hear it or not, but dangit, that's too bad. Good for him to know about something else besides Bikini Bottom. Bye for now.

THIS IS OUR WEEKEND

Remember that peaceful, just-Colby-and-me Friday we were going to have? I should've known better. Go to answer a knock at the door, look outside and there are 4 men standing there, the pest control dude and 3 apartment maintenance dudes. I was still in my Christmas reindeer pajamas, no bra, fuzzy pink slippers. Hair not brushed. Teeth not brushed either, and wearing glasses. The apartment complex had sent out a memo that said they were doing inspections, testing smoke detectors, changing furnace filters, etc. Thursday, the memo said Thursday, dammit, not Friday. But of course they didn't get to all the apartments on Thursday so ours got done on Friday. Hey, thanks for letting me know. Man I was pissed. Some receptacles around here needed replacing, so they said they would come back after lunch to do the work. Took 2.5 hours for them to do it, but it's done now. And by the time they came back at 1:00, I managed to put on a bra and brush my teeth. Go me.  

Went out Friday night with one of my BFFs. I was shocked at how not crowded the bar was! Even after midnight, the place was dead. Guess we didn't get the memo that said don't go to Phoenix Hill on January 18. But hey, you know me, put a cold beer in my hand and sit me down in front of some live music, I'm good to go. We still had a great time being our usual goofy selves. People watching, even in small doses, is so very entertaining sometimes. You know it's bad when you catch yourself asking questions such as, "You think that's a man or just a really ugly woman?" Only to be outdone by,  "Which is worse on dancing Granny over there, her muffin top or her lack of a bra?" And one of my favs, "Nice neck tattoo, really it is." Yikes.  

My Hoosiers won today, just in case you hadn't heard and/or wanted to know. It wasn't without a bit of worry, though, definitely not a blowout. Northwestern came back within just a few points. I swear, Indiana can blow a lead better than any team I've ever watched. A couple of seasons ago they nicknamed U of L the Cardiac Cards. Starting to think they should call Indiana the Heart Attack Hoosiers. They drive me nuts sometimes!     

We're in the process of naming Colby's hermit crab. Yes, I realize he got this crab 6 months ago. Don't judge me, we've been busy. I asked my fabulous Facebook friends for some name suggestions. We got some really great ones, but some really rotten ones, too, like Blue and Wildcat. So these are the names I put on Colby's "name-that-crab" page on his eye gaze: Bob, Hemi, Clarence, Oladipo, Willis, Herman, Rico (my choice), Birdy, Mr. Crab. Either Colby doesn't like any of these names or he isn't in the mood to name his crab just yet. This child's stubborness is beyond belief at times. Guess we'll try again tomorrow. Oh, and to all you buttheads at Colby's school who are trying to covert my kid to become a Cardinals fan, your sneaky tactics seem to be working. Today on eye gaze he said U of L, go-go-go. (Sigh, God grant me patience, and please hurry!!)

I hear my super comfy memory foam topped bed calling me, so I'm stopping for now. G'nite all.

TODAY WILL BE A FREAKING FABULOUS FRIDAY

TGIF, you betcha! Slept in late this morning, well, if you consider 8 a.m. "late." Gave Colby his medications, he's still snoozing away. I have clothes in the dryer and the dishwasher is running. Thought I would take a few peaceful moments to tell you about our week.

Colby had a bumpy day at school on Monday, but other than that has had a great week. Did I tell you he had a pressure sore on his ear? It started out around the end of December as a small, red, slightly swollen bump. We were keeping a close eye on it. Then I came home from work one day. I hadn't even stepped fully inside and Colby's nurse says, you gotta come see this. Sigh, that's never good. Colby's ear had turned into a God-awful, stage 2, big, swollen, nasty sore. I freaked out! Called the pediatrician. Called my nurse practitioner friend to come look at it. They both suggested Bactorban cream. So we've been cleaning and applying the cream to the site 3 times daily and it looks 100x better. We've also stopped using Colby's Z-flo pillows and started using a little pillow shaped like a horseshoe so his ear can fit down in the hole and not be touching anything. I've always taken pride in Colby's skin. I've gotten so many compliments on how good his skin looks, how well we take care of him, etc, then this came along. But I think the issue is pretty much resolved now, thank goodness. Freaking episode over.

The furnace went out Tuesday. Of course it went out when Mr. Winter is at his worst. I ran some errands on Tuesday while Colby was at school. Once I got home, after a couple of hours, I kept thinking why am I so cold? The apartment was at 62 degrees, guess that would explain it! Sometimes I feel like we live in such a ghetto. They had to order a part for it. It wasn't totally shot because if you manually made this little door move down, it would turn on, so we were able to have heat that way. So it wasn't a total bust. The apartment holds heat really well, luckily. Guess I shouldn't complain the next time it gets stuffy in here come spring/summer. The maintenance dude came and fixed it yesterday, so that drama is done and over also.  

We're moving forward with getting the new model of CoughAssist machine for Colby. I saw a pic of it compared next to the old model we've had for 10 years. No comparison. The new model is half the size. Plus it's portable. Do you hear me, it's made to be PORTABLE, meaning it's compact, has a handle and best of all, has a battery and runs on a charge. Hallelujah, praise the Lord, giddy-up, yee-haw, must have one. The pediatrician has forwarded the prescription for it to our wonderful, fabulous, delightful DME company (note the sarcasm.) We'll see what insurance and Medicaid have to say about it. If they denial it, we'll appeal it. If they deny our appeal, we'll fundraise and buy one out of pocket. In my opinion, it's a "must have" for Colby.

Cute eye gaze story: Colby was in speech therapy at school yesterday. His speech therapist likes to try and use his Passy-Muir valve (PMV) with him. Many people with trachs don't like them. So they turned off his vent and tried the PMV. Colby is not known to tolerate his PMV being on for long at all when his vent is off. Colby looked at his eye gaze and said, "ouch, mad." The speech therapist was like, well okay then, and took it off. Well done, son, well done indeed. So proud of him for communicating this thoughts and wow, has he made progress with eye gaze over the last couple of years. Can't wait to see what the next couple of years bring about with it.

Going to wrap this up for now. Need another cup of coffee and it's time to get Mr. SleepyPants up and going for the day. Thanks to all of you who checked in on me to see if I was out of my bad mood/funk last week. I am feeling much better, thank you. Not nearly as overwhelmed and irritated as I was. Just had to have a moment of "are you freakin' kidding me" on several issues. Things are better, for now anyways. Looking forward to a lazy day with Colby. I have him to myself until 5:00 when the night nurse gets here. Those are the days I cherish the most, when it's just my sweet boy and me, doing our Colby and mama thing. Bye for now.

BLAH BLAH BETTER

The rest of the Christmas decorations are down and ready to go into storage. Finally! Of course I missed my chance to take down the outside lights in the 60-degree warmth. Did it in the 25-degree frigidness today. Mark it off the to-do list, yee haw.

I did Zumba on Sunday and step aerobics tonight, which means I'll be sore and whining immensely tomorrow.  If my memory serves me right, it's been about 15 or 16 years since I've done a step class in public. Between learning the instructor's routine and being so stinkin' out of shape, it was not pretty, not at all. They always tell you, just keep moving, which is what I tried to do. Tried being the operative word here.

Colby's nutritionist came today. I was surprised because I thought he had really picked up significant weight in the last few months. Oh wait, I guess that's me, not him. Over the last year, Colby has gained about 8 pounds and has grown 1.5 inches. He is now 4'8" and weighs 73.6 pounds. He's following his growth curve perfectly. What a sweet, BIG boy he is!

When I got home from work on Saturday, the first thing I did was turn on the IU game. It was halftime. The nurse helped me get Colby's back brace on and up in his chair. I got the eye gaze working for him and we took him into the living room. I told Colby I wanted to watch the rest of the ball game. He immediately went through his eye gaze and changed the channel to Nickelodeon. He thought he was being funny, and actually he was. Then I said no, I want to watch the game, and switched the channel back. Then boom, Colby immediately changed the channel again, and we kept doing this for a while. It was so cute. The nurse was cracking up watching us.

That's about it I guess. Waiting for this load of laundry to get washed so I can go to bed. I recently bought a memory foam topper for that piece-of-crap mattress I've had for years. The topper has made all the difference in the world. I fall asleep easier and don't wake up with headaches or hip pain. Best $100 I ever spent! Can't wait to turn on my electric blanket and hunker down for the night.

BLAH BLAH BLAHDY BLAH - BLAAAAAAAH

I'm in a bad mood. Actually, I'm in a really bad mood. It's 9:00 on a Friday night and I'm thinking very seriously of just going to bed. How sad, lame and pathetic would that make me? I'm thinking I really don't care.

Hard to pinpoint my foul mood. Maybe I've finally gone completely nutsy-fartsy. After all, we do have many good things going on around here. Colby is as healthy as he can be. He's gone almost 8 months without a major hospital stay. Can you say, we love trachs. I should be jumping for joy every dang day for that reason alone! He had a great week at school, and I am grateful for that. Loving our "new" van. Thankful that it came along, really I am. But for some reason, I just can't shake these stressed, overwhelmed, frustrated feelings I've had lately. Maybe it's the letdown after the holidays. Maybe it's dealing with insurance and getting supplies ordered. I have had to deal with that a lot lately, and you know that makes my head spin. If I had known changing Colby's private insurance (Humana to Cigna) was going to be such a large pain in the ass, I certainly wouldn't have done it around the holidays. Nah, my original thought about being nutsy-fartsy is probably the reason why.  

I don't know why, but so far my January 2013 has been perfectly yucky. Having some I-can't-handle-all-this-I-need-a-maid-personal assistant-home organizer kind of days. Having a hard time getting things done, which frustrates me to no freakin' end. Maybe I'm just being ridiculous and need to snap out of it. Suck it up and move on, I've been known to say. It would help a lot if I could get some of Colby's stuff resolved. All I can do is tackle it again come Monday morning, which is exactly what I'll do.

Sorry to be such a downer with this update. Next time I blog I'll find something positive or funny to say.

FIRST BLOG OF 2013

What if I told you I made it a goal to blog more in 2013? Well, so much for that "resolution" huh? The last week has been filled with some crappy moments, which I don't really care to repeat. They're over, done, moving on. Lots of everyday moments, working some extra hours, hanging out with kid, ordering supplies, making freakin' phone calls, blah, blah. Had some great moments, too. Let's reflect on those, shall we?

For New Year's Eve I decided to actually wear clothes and not pajamas, do my hair and makeup, and go somewhere. Colby never stays up until midnight anyways. I was invited to a NYE/birthday party. It was super fun to spend time with old friends. And by old I don't mean we're a bunch of geriatrics, but rather they are people I grew up with and have known literally all my life. Really glad I went. I was a good girl, had one glass of wine and that's it. Note to self: do NOT, repeat, do NOT sit at the dessert table, EVER again. I ate at least one of everything. Even shoved an oatmeal, Craisin, white chocolate chip cookie in my coat pocket for the ride home. Pitiful.

My sister-in-law and nieces came over for a visit last Friday. I said hey, since you're coming over, go ahead and bring over my Christmas boxes and let's get the tree down. Heck, they even brought lunch, white chicken chili and cornbread. I think that pretty much makes them the best visitors ever to pay a visit to someone. I'm so mad because I didn't get a picture of the girls with Colby. Hate when I have brain farts like that.

So the best, most exciting, thrilling news I have to share is, are you ready, drum roll please…….we got a van! I was freaking out, thinking that finding us another van would be an impossible pain in the fanny. I've never been so glad to be so wrong. Here's how it came about. Another SMA mom over in Indiana heard through the grapevine of a family that had an accessible van for sale. She thought of us, got the info. Called and gave me the info and asked if I was interested. Heck yeah! So she gave me the contact info for the sellers and the rest is history. While Colby was at school today, I went and got the title transferred and license plate. This is a big deal, a really, really big deal. No more wondering what to do with the benefit money. Should I get a house? Should I get a van? Should I take a cruise? Just kidding on that last one! The van is a 2005 Chevy Venture with a lowered floor and wheelchair ramp. It's white and has 50,000 less miles than our current van. It's going to be a lot easier to get Colby in and out of this van compared to the other. Going to fix the sputter in the Terdmobile and sell it. This is such a huge burden off my mind. Getting another van is a biggie. Makes me think 2013 is going to be a kickass year. I'm hoping so anyways.

Sounds like we'll be able to get a loaner eye gaze while Colby's is being fixed or we get the new one. I set it up yesterday and after about 10 minutes, it froze up. Damn eye gaze. This is what Colby said before it stopped working, "favorite reads fast did awful thank you we are I he did I meet we need them their from before." Yeah, obviously he's out of practice, haha.

Okay, it's after 11:00 and I'm sleepy tired. Colby's first day back to school after Christmas break was today. I was a bit worried he'd have trouble. Ok, I was a lot worried. You know, one day I'll learn to stop underestimating him. He had a great day, but boy, he sure was tired tonight. He was asleep even before I had all his nightly routine done. Hope my sweet boy has another good day tomorrow. As long as he doesn't have a choking episode and is able to participate, I consider that a good day. Nitey-night all.