CHRISTMAS IS OVER? NOPE, NOT AROUND HERE

It's been busy around here. Busy but in a good way, so here's the poop:

Thursday I worked. I thought hospitals were supposed to be slow around the holidays?! I was swamped and still left a mess for the boss when she came back the next day. What up with that? Then Thursday night met some friends at Wick's for pizza and beer. Yum and double yum. Unfortunately our waitress was horrible. Not very friendly to begin with, along with hardly checking on us to see if we needed anything, AND it took forever to get our food. Seriously, don't make me wait on my food, people. I can be this critical because after all, I am a former bartender and waitress. At a pizza place, too! But as always the pizza was delicious. Wick's is one of my favs. And of course spending time with my gal pals was the whole reason we met, so it was all good.

Friday was my only day to sleep in for the whole week. Either we had Christmas goings-on or I had to work. Colby Michael was up at 4-freaking-15AM, just jabbering away. You know how you're not sure if you're awake or dreaming? It took me a while to figure out he was in there awake and wanting my attention. So I drag my sleepy butt out of bed and go check on him. Absolutely NOTHING was wrong. I tried all my tricks. Did he need trach suctioning? No. A dry slobber rag? No. Were his feet cold? No. Feet hot? No. Dirty brief? No. Needed to be repositioned or his head turned the other way? No. Feeding come undone and leaking on the bed? No. He just wanted to say hey mama, I'm up, and you should get up, too. Ugh. I was like, look kid, shut your pie hole and go back to sleep. It's not time to get up yet. He finally drifted off to sleep after 5:00. It was all we could do to keep him awake during the day. I was telling him, oh no you don't. No naps for you Mr. 5-freaking-15 AM Jabber Jaws. Tough it out.

Yesterday we spent the day with my brother, sister-in-law, niece and nephew. The other niece was home sick in bed with a cold. (Sad face.) Dad came over and picked up Colby and me and we drove to Madison, Indiana to meet the fam. That's about halfway for both of us. We met at Clifty Falls Inn and had lunch. They had a sitting room with a beautiful Christmas tree, fire place, couch and chairs. We hung out in there so Colby could lie down. We exchanged gifts, visited. It was very nice. Wonderful actually. Colby had an UNEVENTFUL day. No chokes. No tears. He was the bestest, sweetest boy. Of course he was good, he got to open more presents! We got home and Colby and I watched the UK/U of L basketball game, which totally sucked, and then the U of L/Miami bowl game, which totally rocked. Yeah, I won't be programming any of the words I used during the basketball game on Colby's eye gaze!     

Today I tried to get some things caught up around here. I worked 3 hours doing housework, but you sure can't tell it. On half of the kitchen table are clean clothes needing to be put away. On the other half is a myriad of things, bows, bags, tape, Colby's toys, Pampered Chef boxes, Christmas items needing to be packed away, etc. There is Christmas crap everywhere around here, and I don't even want to talk about the mountain of mail that has evolved over the last couple of weeks. Oh, and Colby's daddy brought 2 more gifts from his side of the family. How many presents has this kid opened since December 3rd? Not sure, many, I've lost count. That child has no idea how loved and supported he is. Enjoyed watching football today also. Lots of good games. Always good when my Colts win. On to the playoffs! Yippee skippy!

I hear a jabbering kid. Either his Spongebob DVD is done or he just wants his mama. Yeah, we all know which one it is. Later, taters. I also have laundry calling to be put away.

MASS, PRESENTS, SWEET BOY - A perfect Christmas Day indeed

This Christmas Day has been simply fabulous for us. Got up and got ready for the day. Got Colby up and ready for the day. My dad came by, picked us up. We went to Mass at the Cathedral. Met my BFF Kim and her boyfriend there. Last year's Christmas Mass ended badly, as Colby had a choking episode, a really bad one, right when Mass was ending. We had Colby all sprawled out, lying on the floor back by the blessed Mary statue. It really was an unpleasant experience. This year I was determined things would go better, and sure enough, they did. As soon as we got there we started scoping out the best place to sit. Kind of hard because Colby's chair is so big with all his equipment on the back vent tray. The priest had come over to say hi, and I mentioned that I really didn't like sitting all the way in the back of church. So he springs into action. Goes completely to the front of the church, the very front freaking row, and starts clearing us out spots to sit. Now, the only thing I dislike more than sitting in the complete back of church is sitting at the complete front. But what can you do? So all 5 of us went to the front and sat for Mass, suction machine being turned on, Colby's jabbering, his vent beeping every now and then, for all the congregation to see and experience. Oh well, Colby has just as much right to be there as anybody else. I kept thinking, what if he chokes? What if I have to give him a CoughAssist treatment right in the middle of Mass? What if we have an emergency with him? WHY are we at the front, very front of the church?! But everything went fine, wonderful actually. Colby did great, and I'm glad we did something "churchy" on Christmas Day. It was important to me.

Came home. Got Colby all settled in for the rest of the day. Did his 2:00 feeding, 3:00 cough treatment. His daddy came over to give him his Christmas present, a new fancy schmancy 10-gallon fish tank. The ex's wife got me a present from Colby. Yes, a little odd I admit, but she's always been super nice to me. I like her waaaaay more than I like the ex. It's a beautiful necklace with a peacock on it. Something I never would have picked out for myself, but actually I really love it. After they left, Colby and I opened the rest of our presents from each other. Now he's chilling out watching some of his new Spongebob DVD, and I'm sipping on a most delicious bloody Mary. They were making Christmas dinner, so I think later the ex is going to bring me a plate of food. Yes, weird I know, but thank goodness we get along decent. I'm sure it will be much better than the flavored popcorn and rum cake I've had so far today.

A friend of mine on Facebook described having all their kids together for Christmas and feeling "content and blessed." That describes how I've felt over this holiday season, too. Very blessed for the gifts we've been given this year. Colby has stayed out of the hospital, first and foremost. Not one single day in the hospital for an illness. NOT ONE! That's almost unheard of in the SMA world. Colby has made such amazing progress this year with learning to drive his chair and operate his eye gaze communication system. Lord knows he still has a ways to go, but wow, just look how far he has come. AND he's going to school 5 days a week! I never, ever thought that would happen for Colby, but sure enough, don't count that little crap head out. He is amazing to me and to many who are lucky enough to know him. He is the sweetest, most precious gift God has ever given me. Every day with him is like Christmas, truly.

Okay, going to let Colby watch a little more Spongebob, then it's Mama's turn to pick what we watch. Christmas Story (you'll shoot your eye out) or National Lampoon's Christmas (shitter's full)? Decisions, decisions. Merry Christmas to all out there in blog land. Hope you build memories with family and friends and that you ended up on the nice list. Or if you ended up on the naughty list, hope you had a lot of fun getting there!

OUR CHRISTMAS DOINGS

Just got Colby tucked into bed. I hear him back there jabbering away, the little stinker. Made me a big glass of chocolate milk, the king of flavored dairy drinks, as according to Spongebob. Popped in It's a Wonderful Life. Buffalo Gal, won't you come out tonight? Thought I'd do a little blogging and get to bed so Santa can come visit!

Yesterday Colby and I had Christmas with my mom and stepdad. The day got off to a bit of a chaotic start, but then things mellowed out. Overall we had a great day. I could swear I told them to be here at 11:30. They swear I said 11:00. So they showed up half an hour early according to me but right on time according to them. Sigh. Colby was hanging out in nothing but his brief, not even dressed yet. And then the nurse came a bit late to flush Colby's port. She was supposed to be here at 10:30, but of course showed up 10 minutes after Mom and Kenny got here. Mom had asked me what I wanted for Christmas lunch. I said biscuits and gravy and scrambled eggs. She just chuckled, thought that was not your typical holiday lunch. Maybe not, but it sure was delicious. They finished up getting lunch ready while I finished getting Colby ready for the day. And I made a rum cake for dessert. Had lunch, then opened gifts. The fun stuff! Colby sure was a grumpy butt though. Not sure why exactly. He doesn't seem sick in any way. Once they went home, Colby and I snuggled on the couch and took a nap before the night nurse got here. Then we gave Colby a bath. Had a couple of friends over for visits and more gift opening. Come to think of it, the evening was a bit chaotic, too. But that's what Christmas is about, spending time with family and friends! 

I worked half a day today. Wasn't it wonderful for me to go in and work so we won't get too far behind over the holiday? Then when I got home the nurse and I did Colby's trach change. Colby and I chilled out for the most part the rest of the night. We've been watching some Christmas movies. My dad came over and fried us some walleye and hush puppies. Yum! Yes, again, not your typical Christmas dinner, but darn tasty. We got Colby up in his chair and we wasn't nearly as grumpy today. So I don't know, yesterday just wasn't his day I guess, because he seems perfectly fine now.

Okay, that wraps it up for now. I'm getting mighty sleepy. Not even going to stay up and watch the rest of my movie. Merry Christmas to all. Take time to remember the reason for the season. 

CHRISTMAS, CHRISTMAS, CHRISTMAS - SO INTO IT THIS YEAR!!

We've been doing a bunch of Christmasy things around here the last few days. What the hell else are we going to do, it's CHRISTMASTIME!!! Shopping, done. Wrapping, 92.6% done. Baking, 95.8% done. If you're jealous, you should be, ha-ha. Actually I had to get my rear in gear because I'm working the next 3 days. My BFF came over Monday and helped me knock out the baking. We made peanut butter fudge, Oreo balls (still have a learning curve with those; it was an adventure), almond bark candy and some yummy Chex stuff with M&M's, peanuts, pretzels and melted white chocolate. There is nothing I'd rather be doing at Christmas than making goodies and no one I'd rather be doing it with than her! Colby had a very special visitor Tuesday night, Santa Claus! Colby's afternoon bus driver's husband dresses up as Santa every year, and they came over to see us. What a kind, thoughtful thing to do! We are truly blessed that's for sure.  

Colby, the night nurse and I went to Lights Under Louisville tonight. It was so neat! I've never taken Colby before, which is sad because it's perfect for him. You drive your car through this ginormous cavern and they have fantastic light displays. Over 2,000,000 lights with multiple themes, and they have Christmas music playing throughout. It was beautiful! Kind of expensive, $25/carload. Luckily we received a free admission coupon at the Hosparus party. Will definitely go back next year though.

Tomorrow Colby is having a pajama party at school. They're also watching Polar Express, which he hates BTW, and having a little gift exchange with classmates. Just one more day, then he's on break for 2 weeks. I know he's excited. He was, let's just say, less than overly excited to do schoolwork this week.

I have yet another "you suck" story about Apria, but this time it involves their enteral department. Never had any trouble with them until this month. Should've known it was too good to be true. Ordered Colby's feeding supplies on December 6th, they were to be shipped on the 12th. Still didn't have them by the 16th and we were completely out of Neocate Jr! Had to borrow some from another SMA family. Called Apria, got the complete run around. They finally agreed we should be getting the supplies. Yeah, no shit peeps. So they overnighted us 3 cans, one of which busted open and spilled everywhere. OMG. Then they sent us via ground shipping the rest of the Neocate, or so I thought. Sent 1 box (4 cans) and we were supposed to receive 3 boxes (12 cans). So I get on the phone this afternoon and say hey, yo, where is the rest of our Neocate, fools? The customer service rep says well, according to this, it was delivered today and dropped off at your front door. Crickets on my end. I was like, ummmm, well, let me check. Sure enough, there it was, 2 boxes of Neocate right outside the door. I felt just slightly on the stupid side. But if they weren't stupid and had shipped everything when they should have, none of this would have happened, right? Right.     

RIP hair dryer. We've been together many years, and I'll always remember all the times you dried my hair in a safe and timely manner. However, your orange, burning coils and your burning smell stinking up the bathroom tell me you no longer wish to continue this relationship. It's not so much me as it is you. No worries, you've been quickly replaced. Girl's gotta do what a girl's gotta do.

Okay everyone, this blog is getting rather long. Plus I need to tuck Mr. Colby in bed, so I'll wrap up for now.

IT'S WRAPAPALOOZA - CARE TO JOIN ME?

This past Tuesday got off to an odd start. I was getting Colby ready for school. It was around 7:30 and we were in the middle of his morning routine. All of a sudden, they declared a snow day and called off school. Why couldn't they have called it off half an hour earlier so we could have slept in?! The nurse and I went ahead and took Colby swimming at Home of the Innocents. He sure loves that pool. It proved to be a good day after all.

Wednesday Colby's class had a field trip to the mall to see Santa. Can you imagine what was going through Santa's mind when he looked up and saw 6 special needs students coming towards him? Hope he had a flask tucked up under that beard!

The rest of the week was so-so. Colby had a crappy day at school Thursday. He wouldn't answer questions or cooperate at all with his eye gaze. He frustrated the teacher, nurse and speech therapist. Then when he came home, I was none too happy either. Had to put him in timeout, which I hate doing. Damn, the kid doesn't get to do much as it is. But I had to stand my ground. He didn't get to watch Spongebob from 2:00 until 6:30. Actually I just turned off the TV all together and had him look at a blank screen for a while. Mean old mama! But guess what happened? Sure enough, Friday he had a much better, more cooperative day. This kid is going to drive me to the cray-cray farm for sure.

I worked half a day yesterday. Then at about 4:00, Wrapapalooza 2013 began! I'm chipping away at it, and I'd say I'm about half done with all my wrapping. There is crap strung everywhere around here! Paper, tissue paper, boxes, bags, bows on my bed, on the kitchen table, on the couch, on the living room floor, OMG I need more room. Dear Tiny Jesus, in your golden fleece diapers, I pray to you we're in a bigger place this time next year. It'll take me at least 15 minutes to clean up my bedroom just so I can go to sleep tonight. Colby has been "helping" me wrap. Together we tear the tape off the roll. So it's probably taking me twice as long to wrap, but he seems to enjoy it, so who cares. I'm old school. I try to wrap as much as possible. Not shove it down in a bag and wad tissue paper on top. I prefer paper, ribbon and bows. But I'm sure by the end of the week, I'll be doing the bag and tissue paper trick, or even the here's your gift in a Wal-Mart bag because I ran out of time trick. Don't judge.  

Took the trash out this morning to the dumpster and saw my good buddy the albino squirrel. Yep, he's still creepy.

Want to hear something pitiful? Of course you do, it'll make your life seem better, haha. When we got home from Cincinnati on November 26, my dad took my van across the street and filled it up for me. No, that's not the pitiful part. Actually that was very sweet and generous of him to do that. The pitiful part is just today, December 15th, 19 days later, I just now had to put more gas in the van. That should give you an indication of just how much I DON'T get out around here. Oh well, easy on the wallet I suppose.

Time to get kid in bed, then I'm not far behind. It's been me vs a headache today, and unfortunately the headache is winning. Looks like I'll be cuddling up with Excedrin and an ice pack tonight. Good night, all. Only 10 more days until Christmas!! Ho-ho-ho.

LET THE HOLIDAY FESTIVITIES BEGIN

Colby is great/super/fantastic. Last Tuesday we attended the annual Hosparus party. Those peeps can really throw a party! It really is an amazing event. I get teary-eyed every time we go. Colby has been lucky enough to attend several years in a row. Santa and Mrs. Claus were there. He is the sweetest man, real beard, twinkly eyes, the world's best Santa in my opinion. We sang Christmas songs. Colby made an ornament. They had a fantastic balloon artist. Then they brought out the gifts! And Colby opened present, after present, after present. Pants, shirts, games, U of L blanket, books, tons of fabulous stuff. Shout out to the generous employees at Beach Mold and Tool for financially supporting this event, and thank you to the fabulous Hosparus gang for hosting and providing us with the best party ever. If that doesn't put you in the Christmas spirit, trust me, nothing will.

Colby has been hit or miss on his participation with eye gaze. Some days he's on it, some days he's not. He's doing very well driving his chair, though. We'll take him swimming tomorrow. He hasn't been able to go for the last 2 weeks because 1 week I had to work and last week was the Hosparus party. Then Wednesday his class will be going to the mall to see Santa and shop for gifts. I have to remember to send some money with Colby so he can buy me something really cool with my own money haha.

I'm great/super/fantastic as well. Oh sure, there are always some pain-in-my-ass events going on. Like the idiot neighbor of mine who parked in our handicap spot last night. They do it again, I'm calling to get them towed. Rude! But overall, I have no major complaints. We had the perfect snow day this past Friday. Finally got the ornaments on our tree. I keep it simple. No garland, none of those stupid icicle strands. No color schemes. Just sentimental ornaments. I think our tree looks perfectly beautiful.

Took my stepdad out for Homemade Pie Kitchen tonight. I mean, doesn't everybody go out for ice cream in December when there's snow on the ground? Good thing I did an exercise tape today, oink oink. Going there is "our thing." We take each other there for birthdays, Mother's Day, Father's Day. He's pretty much the coolest stepdad in the universe. Got lucky there, very, very lucky.

I've made my list and I've checked it twice. I must brag on myself a bit because I only have a few more gifts to get, 4 or 5 maybe, and I'm DONE shopping for the holidays. This is a miracle I tell you. I'm the world's worst Christmas shopper. Indecisive, thinking I'll find something nicer or at a better price somewhere else, then end up with nothing at the end of the day. Not this year by golly! I've had focus, which is not easy for me. Ooooh, shiny object!! And isn't online shopping freaking fabulous? I have a goal that I'll be done going out and shopping by Friday afternoon. If not, the rest of it will be done Saturday morning at the butt crack of dawn before Colby gets up. Mama ain't got time to waste.

Better wrap this up for now. Just wanted to let everybody know things are okie-dokie-artichokie around here. Nite-nite, more blogging soon.

FUNDRAISER INFORMATION

It's probably no great surprise that money can get tight around here sometimes. I can only work part time, so yeah, do the math. My wonderful, thoughtful, caring friends are doing a fundraiser for Colby and me. Here is the info:

Pampered Chef Fundraiser 

benefiting Amy and Colby

Thursday, December 5, 2013

7PM to 9PM

Memphis Christian Church

13503 Memphis-Blue Lick Rd, Memphis, IN 47143

 Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type I as a baby and is currently wheelchair and vent dependent. There are so many expenses above and beyond what insurance will cover. Amy and Colby will receive 15% of the profits from the show to help ease the burden of out-of-pocket expenses. Karen will be making The Big Enchilada, Touchdown Taco Dip and S'mores Cake. Hope to see you there - should be lots of fun!

Can't make it on the 5th but want to place an order? No problem!

You can order online. Here's how:

Go to new.pamperedchef.com/pws/karenchildresspcdiva. Click on top left corner where it says Shows you're invited to or hosting. Hit drop-down box. Click on: Looking for a specific show? Type in host first name: Amy. Type in host last name: Bagshaw. Click on Search. The link for the show will show up at the bottom.

Orders will be in by Christmas - start holiday shopping today!

 We're also raffling off the awesome rockcrok 4-quart capacity Dutch Oven featured on page 2 of the catalog. This cookware can go from stovetop to microwave, grill, oven, broiler. Raffle tickets are $2.00 each.  

If you have questions, please ask in the comment section below.      

SICK OF TURKEY YET?

I decided that Colby and I would stay home for Thanksgiving this year. Usually we go to my aunt and uncle's and spend 3-4 days. I love getting in the kitchen with my aunt. But it just wasn't meant to be this time. Colby had that procedure done Tuesday. He had never had this outpatient procedure done, so I didn't know how he was going to feel. Docs said he may run a slight fever. More than anything I was worried that he would have trach bleeding, plugging, etc. I was concerned his airway would be too unstable to travel. I could see us in the middle of BFE Indiana trying to do an emergency trach change in the van. Uh, no thank you. Plus I think it takes a couple of days to get over anesthesia. Maybe that's just my silly opinion, but my silly opinion counts when it comes to my kid. They live 1.5 hours away, one way. Colby would have been completely exhausted if we had gone. And to be honest, I was quite tired myself. Been a little on the busy side lately. Plus I had to work today and tomorrow. Too many factors to consider.

What did Colby and I do yesterday? Absolutely nothing, and it was wonderful. MUCH needed down time. We never moved off the couch. We'd watch an hour of football, an hour of Spongebob, back to what I wanted to watch, what he wanted to watch, and so on. I did manage to do a load of laundry and bathe. Also got the Christmas tree in the stand. It's not decorated yet, just in the stand. Other than that, total couch potato. The ex brought me over a plate of food around 6:00. Yes, I know it's odd. But he lives 1 mile down the street. Makes more sense for him to bring me some Turkey Day grub than someone else. His sister's coconut cream pie was as fabulous as I remembered. Then my dad brought me over leftovers from my aunt's today. My sister-in-law made my world-famous carrot cake. I must say, she did an excellent job. So like everyone else, I've had my share of turkey, mashed taters, gravy, stuffing, etc. Really missed seeing the family. Next year we're going to my aunt's come heck or high water.

Been waiting oh so patiently for Colby's trachs that we ordered on October 25th. It takes so long because #1 they are custom made and #2, they are sterile. This is what I've been told anyway. We received the shipment Wednesday. And yes, you guessed it, they were the WRONG damn trachs. I was just sick. I mean literally I got sick to my stomach. I said a few choice words, then just let it go. I mean, really, what can I do? I'm at the end of my rope with this mess. What else can I do? I've done EVERYTHING I know to do to help get this issue resolved. I called today and reordered his trachs, asking the lady, what am I supposed to use between now and then for trachs? She didn't have any answers. Neither do I anymore. So in case I haven't made this perfectly clear recently, Apria sucks! They are slow, stupid, incompetent, worthless and an all around pain in the ass to deal with.

Okay, enough of that. Nothing I can do about it right now. I'm going to go hang out with Colby. He's my shining light as I travel through this shitstorm called life. No matter what other frustrations I have, when I see his sweet, cute face or hear those jabbers, things don't seem so bad. Then I'll have the rest of that carrot cake and all will be right with the world. Hope all my family and friends had a safe, fun, memorable Thanksgiving. We should all be thankful every day. No matter how crappy things get, I bet if we tried, we could find a reason to smile. There was a row of lights out on my pre-lit Christmas tree. I fiddled with it a few minutes before I went to work. And ta-da, now all the lights are currently working. See? A small, smileable moment. Take them where you can get them, right? 

MY SON ROCKS! BUT YOU KNEW THAT ALREADY, YES?

If you're the kind of person who doesn't like to read when people go on and on about how wonderful their kid is, this blog entry is not for you! Kudos to Colby for so many reasons! Let me tell you all about it.

Colby's attitude and school performance have been much improved over the last couple of weeks. There for a while he was just flat out pissing me off. He wouldn't try to do anything at school, was being a total butthead. One of his goals at school is he works on driving his wheelchair. He wouldn't do it - did nothing but either a) sit there like a doofus or b) drive in circles/donuts. Also wouldn't participate in anything academic related. Would not answer multiple choice questions on his eye gaze in any subject. The teacher was writing in Colby's communication folder, "He refused to answer his math questions at all today" and "quite stubborn on answering reading goals with 0% accuracy." Really, Colby, I mean really? I was about to pull my hair out. Then poof, it was like he flipped a switch. All of a sudden he has started trying harder to drive his chair and is answering questions on eye gaze. The middle of Colby's school is a big square. Last week Colby drove 2 laps, independently, around the square. This is a HUGE deal, folks, a really, really big deal. Colby has never done anything independently in that wheelchair except run into parked vehicles! Plus he has started to answer multiple choice questions on eye gaze. The other day his teacher wrote, "Colby did a great job answering questions quickly with his ABCD page." Now that's what I'm talking about! I know he can do this stuff. I'm so very proud of him. Everyone is proud of him actually. Good job, Colby, way to put forth effort (about time, sonny boy!)

Today we took Colby to Cincinnati outpatient surgery for a follow-up ML&B and flex broncoscopy. Basically that means they put Colby under anesthesia (always scary with an SMA kiddo) then both ENT and Pulmonary used scopes and went in to look at Colby's nose, throat, trach site and lungs. This was all followup from his trach surgery. Last night at midnight I had to stop Colby's feeding and start fluids (Pedialyte.) Then I got up at 2:15AM to start getting ready. That's right, 2-freakin-15 in the freakin flippin morning! Started getting Colby up at 3:00, bless his heart. Dad, nurse Alli, Colby and I were loaded up and heading for Cincy at 4:30. They wanted us there at 6:15. Everything went smoothly. His procedure was scheduled for 8:25 and they didn't come get him until 9:00, but it sure as heck wasn't our fault. We did what was asked of us, getting there at 6-freakin-15 in the freakin flippin morning. ENT said his trach site looked awesome, no signs of infection or inflammation. Pulmonary said for the most part things looked good, then showed me the pics from his broncoscopy of the lungs. Man, those right-side airways are messed up! Very compressed. Very jacked up. The pulmonologist said it was a miracle with Colby's compressed airways that he has remained as healthy as he has. He said whatever we've been doing for airway clearance, which is saline nebs, IPV and CoughAssist 3x daily, is working. Colby did great. He is such a trooper. He never whined or griped about anything the whole day. He's the bravest, strongest, sweetest, most wonderful son I could have ever gotten. I love him and am so, so, so, so, so proud of him and blessed to be his mama.   

Needless to say we're all tired. Colby and I will both be in bed by 9:30. Maybe 9:00 if I get in gear! Tomorrow will be a catch-up day. Go pick up Colby's briefs. Go to the grocery. Give Colby a bath. His hair is starting to smell funky! Unpack all the crap from today, etc. But I'll worry about that in the morning. Right now all I want to think about is sleep. Deep, glorious, much-needed sleep. Nitey-nite, all.

Friends Show Their Love in Times of Trouble, Not in Happiness -- Euripides --

I have no flippin' clue who that Euripides dude is, but I loved this quote. You'll see why later.

We all have days that are set in our mind. The day someone is born, the day someone dies. The day you get hired, the day you get fired. The day you get married, the day you get divorced. One of those days for me is what I call D-Day, the day we received Colby's diagnosis. Hard to believe that on November 14, ELEVEN years ago, I was told my sweet boy had SMA. Talk about a kick in the pants! Nothing like being told your kid won't live to be 2! Yeah well, mean, cold, inconsiderate neurologist we saw here in Louisville, you can suck it! He told me "there is nothing that can be done for him." Oh really?! Wrong, wrong, wrong! Children with SMA most certainly can and do live past 18 to 24 months of age. And furthermore, you asswipe, Colby isn't just alive, he's LIVING and THRIVING because so many of the people who love him have sacrificed for him to have a healthier/happier life. I'm not the only one in that category - many, many people help me with Colby and have done nothing short of move mountains for that child. I can't lie, yesterday was a hard day for me emotionally. But I refused to let myself cry. Instead I focused on all the wonderful memories I have with him, and the sweet, cute, smart, amazing, awesome son Colby has turned out to be. He makes me so very proud to be his mama. However, I did allow myself to have a Heath bar and Bailey's on the rocks for supper. You handle your bad day your way, I'll handle my bad day my way. Don't judge.

There are days I could absolutely crawl up in a corner, assume the fetal position, start sucking my thumb, picking and eating imaginary bugs out of the air. It has nothing to do with Colby directly. I love spending time with him and love taking care of him. His jabbers are the most beautiful noise I've ever heard. But as you all have heard me go on and on and on about, the calls, appointments, supplies, equipment and overall incompetence of others drive me completely nutso. Thank God for my parents and thank God for my friends. They have helped me maintain my sanity (for the most part) over the years. I have the BEST bunch of girlie friends I could ever hope for. When the poop hits the fan, that's when you find out who your TRUE friends are. I'm very proud to say I've kept a lot of TRUE friends over the years. I live a very different life from them, heck different than most people really, but it doesn't matter. They love me, they love Colby, want to help and want the very best for us. What more could I ask for, you know?

Just this past week I've had 3 amazing examples of my friends' unconditional love and ongoing support. Sunday a friend stopped by after church to say hi. We hadn't seen her in forever. I was at work so I missed her, but she came in and hung out with Colby for a bit. She also left me an envelope labeled "just a little love." She knew money has been tight around here lately and wanted to help. I totally wasn't expecting it, and was very humbled by her generosity. Then another friend sends me a text and says, I want to come help you clean, which day is better Monday or Tuesday? I mean really, who does that?! My kind, thoughtful, amazing friend, that's who. She came over Tuesday and helped me clean for 2.5 hours on Tuesday while Colby was at school. We got the Halloween decorations packed away and Thanksgiving decorations out, among other cleaning. I'm sure she was thinking I'm a total goof ball. And the answer is yes, I have decorations for every season/holiday. Don't judge. And to top it all off, my BFF is organizing a fundraiser for us. Just because we need it and because she wants to help. She has taken care of everything. I'm pretty sure all I have to do is show up! I mean wow. Just wow. Can't believe how lucky I am to have these, and many other, thoughtful, kind, sweet, fun, loving, caring women in my life. So THANK YOU to my buds for all you did this week. And thank you to all my friends who have hung in there over with us over the years. It's been a wild, winding, wondrous road travelled, that's for sure, and if I didn't have you by my side I honestly don't think I could do it. Thankful for my BFF's today and every day.  

TWO THINGS I'VE DISCOVERED I NEED - GNO AND HOT WATER!

Who's ready for another Girls' Night Out? I am, I am! Went out with some girlie friends last Thursday. Nothing fancy, just to Buffalo Wild Wings for supper. Note to self, go somewhere else for conversation. That place was loud! But we still had a great time. I've known these chicks forever. I mean we go waaaaaay back, and it's so great we've stayed friends all these years. I haven't spent enough time with friends lately, and I really need to work on that. My friends keep me grounded and positive, and I certainly have needed help in that area lately. Last Friday I ran down to Lexington to visit with another SMA family. They needed to borrow a piece of equipment. We had a nurse so I said hey, I'll bring it to you. It was great visiting with another SMA mommy. We speak the same language, literally, SMA. We can talk about stuff and support each other in a unique way. Plus I got a couple beers and quesadillas out of it. Oh yeah.  

Colby has had an easy school week so far. Monday he was off school. We got to sleep in until 8AM! The nurse and I took him out to a pre-surgery physical here in Louisville. Colby has seen the same pediatrician since his diagnosis. Luckily we haven't had to go out there much in the last couple years. Dr. Lehocky was excited to see Colby. He went on and on about how good Colby looked. He had many compliments for Colby, saying how amazing he is, how far he has come, etc. Made me extremely proud. Tuesday he got to leave school early because it was swimming day at Home of the Innocents. Colby was digging it. Love to see those legs moving through the water. Then later that night we gave him a haircut and bath. He was one tired boy last night. Today his class had a field trip, so I bet he loved not having to learn or work on math, reading, etc.

So do you want to hear another genius move that Apria pulled this week? Or as some of my SMA mommies call it, Crapria (hilarious!) Sure you do. Apparently UPS had been trying to deliver a package here that needed a signature for delivery. After the 3rd attempt, UPS said I had to come pick it up. I had no idea who it was from or what is was. I was like, oh great, I'm probably getting subpoenaed. Then I thought, I bet you anything it's from those dumbasses at Apria. Sure enough. Went to the UPS pick-up site, signed for it, and it was a box from Apria. A box of 14 French red rubber catheters. This is a double shipment, we just got those in a delivery from Apria a couple weeks ago! So now in the last month they've sent us 196 too many CoughAssist filters and 90 too many red rubber catheters. Well guess what, I'm not sending these back. Just won't order them next month.

Our day started out just oh-so lovely. No hot water. None. Last night when we were giving Colby a bath around 6PM I kept having to turn the cold water down. The water was barely warm by the time we got done. Then it was completely out by 8PM. It wasn't an isolated incident - the whole building had no hot water. Finally at 3:15 today we got our hot water back. Good times, gooooood times.

I guess that's about it for now. I'm letting all the piddly, everyday crap get to me around here, and I just need to stop it. There are lots of people around who are in far worse shape than us. I have tons of support from family and friends, and everything is going to be okay. So I just need to pick myself up, suck it up, and move on with it. Life is too short to be sad, stressed or worried all the time. After all, this is the month to remember what we're thankful for, right? 

AM I A MAMA'S GIRL OR A DADDY'S GIRL?

Both! Yes! Thankfully I am both. You know I was on a quest to get the apartment clean. Was slowly getting there, then got that stupid migraine last Sunday. Mom came over Monday while Colby was at school to help me clean. Got under the kitchen sink and items were wet. Paper towels soaked, cardboard containers warped and damp, etc. I was so pissed! I've told the apartment office 2 or 3 other times it's damp/wet under the sink. They come and look at it, but obviously don't fix it. They are a bunch of half-assers around here, and I HATE this place. Called the office, no one answered. I swear they saw my number and didn't answer. My mom was fired up. She said that does it, I'm going over to that office. Holy crap, she's tiny but feisty. So they came over, immediately LOL, and looked. It is fixed now? Who knows. We're hoping among the new dishwasher, new faucet and replacing some piping under the sink, it'll stop leaking. If not, I'll send Mama back over. Thank you, Mom, for helping me clean and for still looking after me when I need it. Mama saves the day!!

Oh, and when the apartment replaced my faucet, they didn't take off and save the little adapter piece thingy for the washing machine. It's my fault because I didn't tell them to take it off and save it. Even though, hello, there is a portable washing machine sitting in the kitchen. Guess they couldn't put 2 and 2 together that I needed to keep the adapter. So I couldn't do laundry until we got a new one, and Colby Michael is a laundry-producing kid for sure. Shit the bed, it's ALWAYS something around here. Dad came over, ran up to the hardware store, and bing bang boom, $6 and one little adapter later, the faucet, adapter and washer are all in working order again. Doing a load of darks right now as a matter of fact. Pop saves the day!!

Took Colby swimming this past Tuesday at Home of the Innocents. It went much smoother this time, and I think he really enjoyed it. There will be 2 Tuesdays this month we can't go, one I have to work and one we'll be at Cincy Children's. Bummer. Really happy we got this arranged for Colby. I think it's good for him physically and mentally.

Let's talk about country ham. More specifically, my adoration for it. Mom and Kenny order it from the Loveless café, and she brought me over a couple of pieces. Oh my, it's very salty and delicious. Warm country ham, a fried egg and mayo. That's heaven on toast, let me tell you. Thinking it will be my breakfast as soon as the laundry is done.  

Hey, I don't know if you've noticed, but it's only November 9th. Tired of the Christmas crap already! And trust me, I love Christmas, but come on, man. There are 2 radio stations that started playing Christmas songs the day after Halloween and that is just messed up. I love Christmas. I love all holidays, but especially Christmas. But I HATE the commercialism that goes with it. So tired of the sales and you have to get out now and by the perfect gifts for everyone or you're a big piece of poo. Can't we do one dang holiday at a time?! I still have all my Halloween decorations piled up on the table waiting to be packed away. Also have a tote of Thanksgiving decorations waiting to be put out. Enough of the Christmas. It's not Christmas time, people, for crap's sake, do you hear me? It's NOT time for Christmas. It's early November. It's not December. It's November, the Turkey Day month. Okay, rant over. But seriously, it's too early to deal with Christmas. Let's get through Thanksgiving first, dammit.   

Time to get a shower. I have to work this weekend. Booooo, but a girl's gotta do what a girl's gotta do. Plus I have country ham to fry. Bye for now.  

TYPICAL SCHOOL DAY

6:50AM - Start saline nebulizer treatment.

7:05-7:40 - Do IPV and CoughAssist treatments. IPV takes 25 minutes, 5 cycles at 5 minutes each. CoughAssist is 4 sets of 5 breaths. Suction nose, mouth and trach as needed. While IPV is running, brush Colby's teeth and wash his face.

7:40-8:00 - Give Colby his medications: Zantac, Zyrtec, Co-A-10, elderberry and MiraLax, along with 6 oz water. Do g-tube site, trach and ear wound care.

8:00 - Nurse gets here. She makes Colby's food for the day. Gets his first feeding ready and puts it in his backpack. While she's doing that, I change Colby's brief, wash him up a little (stinky pits especially!), give him range of motion exercises.  

8:30 - We get Colby dressed - pants, AFO's (ankle/foot orthotics), undershirt. Give him some more range of motion/stretching along the way.

8:50 - Put on Colby's TLSO (back brace) and shirt. Drive wheelchair in Colby's room. Lean it back, open up head support, lift arm supports, fold out laterals.

9:00 - Plop Colby's big butt in his wheelchair. Adjust all supports and laterals, put on seatbelt and chest harness. Drive him to the living room. Hook vent tray on the back. Load on vent, suction machine, CoughAssist and oxygen.

9:10-9:15 - Bus arrives. I walk out and load his backpack and eye gaze. Nurse and Colby follow. Nurse put on Colby's neck brace. They load up and away they go.

And that, my friends, is what it takes to get an SMA kid somewhere. Every--single--day. No skipping steps. No short cuts. When you see someone in a wheelchair, you should appreciate what that individual had to do just to get ready for the day. You really don't have a clue until you're walking the walk and talking the talk. I know I didn't, but I sure do now.

OCTOBER WRAP UP

This will probably be quite a nonsensical update. I was blessed (sarcasm) with a migraine earlier. It's been months, maybe even over a year, since I've had one. I sincerely feel so sorry for people with chronic migraines. I swear I don't know how they function, because I certainly can't. Thank goodness we had nursing today. I took 2 Excedrin Migraine, went in my room with an ice pack on my neck, and slept it off. Headache is gone now, but there's a bit of a hangover effect, so I'm a little off tonight. I little more off than normal that is. I don't even care about the Colts game right now, so you know there's something not right with me.  

Ran my new dishwasher for the first time tonight. They disconnected the old one last Tuesday, leaving a metal coil hose thingy hanging out the cabinet and into the sink. So if I wanted hot water I had to get under the sink and turn on the main hot water knob and let it run from the hose hanging down in the sink. Totally ghetto. Finally on Friday I called and said look, either put in the dishwasher or hook my hot water up properly. They promised me by the end of the day it would be taken care of. It wasn't. But they did install the dishwasher yesterday. I was scared to run it, afraid they jacked it up and there would be suds running out into the living room. But it appears to be okay. So quiet!  

Our Halloween was super duper fun, although it made for a very tired Colby and mama. I found an extra costume in the back of Colby's closet. Yes, we are such Halloween freaks we have extra costumes just lying around. So Colby was a vampire, a mighty cute/scary/handsome vampire I might add, on Wednesday night. Took him to Bass Pro for trick or treating. It was packed! Colby's nurse was a great sport. She was more than willing to participate in the school's Halloween party. As you can see below, we made an awesome trio. Colby ended up winning best costume for the whole school! Well yeah, what other kid had 2 human props?! We didn't go out Halloween night, the weather was too crappy. All our Halloween decorations are on the table. Waiting for my dad to bring over the totes so I can pack them away. Time to move on to Thanksgiving plans now. NOT Christmas for shit's sake. It is NOT December, people. It's November, the month of Thanksgiving. I heard a radio station playing Christmas songs the other day and thought I was going to vomit.

I didn't get as much done around the apartment as I wanted over the weekend, but what else is new. Worked a half day at the hospital yesterday. Did manage to get the kitchen and bathroom clean. Really meant to spend time in my room today changing out summer/winter clothes, changing the bed, etc. But the headache squashed those plans. Guess I'll work on that tomorrow while Colby is at school.  

Okay, seriously, I have typed a zillion typos so far. Fingers and brain not working together. Brain is tired. Getting ready to tuck in Colby and go to bed. Tomorrow will be better, yes?  

     

SHAKE YOUR HEAD, SHAKE IT OFF, AND MOVE ON

Never, and I mean NEVER, a dull moment around here. Wait til you hear how our day has gone.

Remember how I said there were 5 things that needed attention around the apartment? Well I called the leasing office yesterday and reported them. Maintenance came over the same day and replaced the light fixture in the kitchen. Super. Looks great, very modern, gives off lots of light. Love it. This morning the dishwasher was running, very loudly I might add, then it literally died. Just pbbbt, stopped, leaving 2 inches of nasty water in the bottom. Called the office as soon as they opened and told them the dishwasher issue needed to be moved to the top of the priority list. After another phone call in the afternoon, they finally sent someone at 5:00 to look at it. He said yep, the motor is dead. I felt like saying yeah, no shit brainiac, but I didn't. He's coming tomorrow to shop-vac the nasty water out of the old one. The office said a new one should be in within 3 days or so. Lovely way to start the day.

Oh but wait, it gets better. I usually work on Wednesdays, but today I traded so I could be off tomorrow to go on Colby's field trip to the pumpkin patch. My phone rings around 1:45, it's Colby's nurse. Hey Amy, did you put the house key in Colby's backpack this morning? A wave of panic comes over me. No, sure didn't, did you by any chance? No she says. So they were locked out of the apartment. Wonderful. I said no problem. Go to the leasing office and they will let you in. Five minutes later my phone rings again. Big  sign on the office door that they were off the property at a meeting and wouldn't be back until 3:00. I said I'm on my way. We are swamped at work right now, and I hated that I had to leave an hour early. But I hated the fact that my kid was outside stranded more, so I took off out of there like a bullet. Now there is an extra key on the inside pocket of Colby's backpack, and now my dad has a key since he's the one who usually helps the nurse get Colby out of his wheelchair if I'm not home. I'm just thankful it wasn't raining, or freezing cold, or 95 degrees outside.

Another bummer is that Colby didn't get to go swimming today. I had to work. I tried to reschedule it for Friday, but the facility said it couldn't accommodate for us that day. So we'll wait until next Tuesday I guess.

We finally, somehow by the grace of God, got a trach for Colby. I have been on the phone talking to anybody that would listen trying to get this worked out. Finally the local branch called and said they had a trach for us, and they would ship it. I said absolutely not - hold onto it and I'll send someone to pick it up! I swear, I don't even trust them to do a task as simple as mailing a package. They would probably forget the apartment number or send it to the wrong patient, something brilliant like that. Colby's dad went and picked it up, so we're ready for Colby's trach change this Thursday.

So you all know what a persimmon is, right? Actually I'm surprised at the people I've met lately that don't know what it is. Dang city folk. It's a small, brownish/orange fruit that grows on a tree. When they fall to the ground, they're ripe. You pick them up, then pulp them to make bread, pudding, etc. I made a persimmon pudding last night and took it into work. I got lots of compliments on it, which made me happy. I love when I cook something and people enjoy it. Kind of wishing I had brought a piece home with me about right now.   

Colby's dad and stepmom came over tonight and we carved Colby's jack-o-lantern. Before they got here, I let Colby choose the face he wanted. We let him play around in the pumpkin guts, then he drew the face on his pumpkin. He loves that jack-o-lantern. We have it lit back there in his room. Who us? A fire hazard? Nah. I also have a strand of ghost lights and his Spongebob pumpkin hooked up to a switch so he can turn it off and on. He's back there in Halloween heaven right now.

No one, neither ENT or Pulmonary, has called me back from Cincy about rescheduling Colby's appointment for his ML&B and flex bronch. I find this highly annoying, since I called ENT surgery scheduling week before last and called Pulmonary surgery scheduling last week. I'm picking up an extra week's work in November, so I need to know when his appointment is NOW so I can make arrangements or reschedule for December if necessary. Guess that will be my next set of phone calls as soon as I get the chance.  

Going to bed as early as I can tonight. Busy couple of days coming up with Colby's field trip tomorrow and of course Halloween on Thursday. Can't wait to post pics of Colby in his costume! And nope, I'm not giving any hints. You'll just have to wait and see. Bye for now.

 

OUR WEEK IN REVIEW

The nurse will be here at 9AM today, so I'm enjoying a few quiet moments by myself.  Sort of quiet. The dishwasher is running, and that poor thing is on its last leg. Need to go tell the apartment office that it needs fixed/replaced, along with a few other things. Tell you what. Let's take bets. I'll go over Monday morning and tell them what needs done here, and we'll see how long it takes them to actually do it. Here's the to-do list: finish painting in the living room where they hung the new blinds, toilet handle sticks all the time, new faucet and lighting fixture in the kitchen, and now the dishwasher. My guess is 2 months, at least. In other words, they're slow around, and I find it very annoying. Colby is still asleep. I'm enjoying my morning coffee, watching Sportscenter and pecking away on the computer with my black and orange fingernails. Yes, I think it's official, I'm a Halloween freak.  

Monday was an interesting day. While Colby was at school I went and visited with the ex in-laws (the 1st set, haha. ) Hadn't seen them in probably 18 years or so. Had the most wonderful visit. So glad I went. Picked Colby and the nurse up after school so we could take Colby to get his flu shot. That kid is one tough dude, let me tell you. Took him to Kroger because I thought it would be easier/quicker than going to the pediatrician's office. Think again, there were several people in front of us getting their shot, too. Seemed to take forever. Colby did awesome. Didn't cry or whine one bit.  

Kudos to the principal at Colby's school for helping arrange swimming therapy for Colby. They have a pool at his school, but it's not ideal for Colby. It would be difficult getting him in the pool. Plus I could tell the school was leery to have Colby swim there, even if I was there to get in the pool with him, since he has a trach. The principal said, hmmm, we've never had a trached kid swim here before. Yep, leave it to us, we're trailblazers! We were able to make arrangements with the same facility we went to over the summer. They have a beautiful, modern swimming facility which is a much better option for Colby. So on Tuesdays the school bus will take Colby and the nurse to this facility. I'll meet them there and we'll get Colby in the pool. The lady who runs the pool at this facility found a perfect vest for Colby to use. It supports his head and neck, but still allows him to move his arms, hips and legs. Very excited for Colby to get to go swimming.  

Wednesday Colby got in "trouble" at school. He was being a total poop head. He refused to answer his math questions. I mean flat out would not do it. So the teacher gave him 5 problems to do at home. Then he refused to do them at home. He was being beyond difficult that day! So he got no Spongebob until he got his math done. Then I went ahead and tacked on some more time, so no Spongebob until 5:30. I told him the next time I got a report like that from school, it would be 6:00 until he got to watch Spongebob. The next time after that, 6:30, etc. Not sure if he was just having a bad day Wednesday or if the Spongebob threat worked, but he was more cooperative on Thursday and Friday. Stubborn doesn't begin to explain this kid's personality, holy crap.

I would love to tell you that the situation of ordering supplies with Apria has gotten better, but unfortunately it hasn't. I've talked to customer service, the RT that is in charge of Colby's account, and now the branch manager at the local level. I've called the processing center and got the name and direct line of someone who is supposed to be helping me get Colby's trachs. It continues to be a big, fat, horrible, frustrating mess. On the 17th I ordered 8 items. As of today we have received 6 of them. We're allowed 4 CoughAssist filters monthly. They sent 4 alright…4 cases! We have 200 CoughAssist filters sitting in the living room! Freakin' idiots! If it wasn't such a total waste of money, I'd pitch them in the dumpster so I didn't have to mess with it. But I know that's not the right thing to do, so I'll work on returning them. Oh, and Colby's trachs were supposed to be delivered Friday. Of course they weren't. The lady at the processing center said to call her if we didn't receive them. I called her, left her a voice mail message. She didn't return my call. Yep, same old, same old shit there.  

Thursday I had a much-needed girls' night out. We went to the Haunted Hotel. My friend and her sister go every year, and I've gone with them the last 2 years. I kept saying, okay, I'm not going to scream this year. I've done this before, I'm ready. Well forget that. Along with jumping out from the dark shadows and corners, they're allowed to reach out and touch you now. That's just messed up. It was a terrifying blast. So glad I went. Already looking forward to going again next year.     

Okay, I'm getting a little chatty here, so I'll wrap this up for now. The nurse will be here in 15 minutes. If she's on time, of course. That's always a big IF. She'll get Colby up for the day. I'm going to go walk, then start getting ready for work. Yep, my weekend to work 2nd shift on the counter. Simply just can't wait (note the sarcasm in that statement.) Later, taters. Time to get this day started.

CREEPY CREATURE & OTHER BLOGWORTHY NEWS

Check it out! Finally got a pic of that nasty, weirdo albino squirrel. Literally chased the thing around the parking lot. First I saw it on the ramp again, up by our door. Then it was under the van. Then it scurried across over by the pool. Then by this tree and eventually up the tree. I've had a couple people tell me that albino creatures are good luck. In that case, next time I catch it on the ramp, I'm going to capture it and make it our pet! Just kidding, that thing totally weirds me out.

Colby is at it again on his eye gaze. You'll never guess what he said at school the other day: "I want girlfriend." His nurse texted me that and I said oh no he did not! She said absolutely he said it. Lord give me strength. We've been working on how to get Colby to use Facebook through eye gaze. His speech therapist came over Friday and we figured out a few things. Not an easy process to get a kid who isn't able to use a keyboard and mouse on the Internet. But we're not giving up. He sent his first Facebook message, rxrxxrx. I was so stinkin' proud of him! My little high-tech redneck! Can't wait until he can communicate for real with everyone. Tonight around 8:00 he said, "am I tired?" Actually he was acting tired. So, yes Colby, I think you were, haha.  

Colby's nurse had a sore throat this past Monday, so she went to the doctor, just as she should. The rapid test was negative, so she thought cool, no problem. She worked the whole week, 40 hours, taking Colby to school. Then her doctor calls her on Friday and says the throat culture they took came back positive for strep, and they wanted her to start antibiotics. Dammit, can we not catch a break around here? Colby seems fine so far, I think. Thank goodness he's already on an antibiotic. We just finished that today. Although all 3 of his cough treatments were rough today. Had some oxygen drops and I had to stop the IPV, give a set of coughs with the CoughAssist, hook in oxygen etc. You can never be nonchalant with SMA. NEVER, not an option. So I'll be on heightened alert with him over the next couple of days.  

Not much else going on around here. Yesterday I worked. When I got home, the nurse and I got Colby up in his chair. Grandpa came over and we all played a riveting game of Yahtzee. Grandpa won. The nurse left at 5:00, and we didn't have a night nurse. It was very nice to have my sweet boy all to myself. Reminded me of the good old pre-trach days. Just Colby and mama. Don't get me wrong; I'm thankful for the help we have. We have 5 nurses right now, and I'm pleased with all of them. But some days you just need a little space! Today the nurse and I took Colby to pick out his Halloween costume. Nope, I'm not telling what it is. You'll have to wait for the pictures.  Colby seemed to have a good time looking around at all the scary stuff hanging from the ceiling. I was like a kid in a candy store. Did I mention I really, really, really like Halloween?

Okay, look people. The Colts/Broncos game is on, so I'm wrapping this up now. Hope my Colts can hold on to their lead. We've got a pretty busy week ahead, but I'll update when I can.

JUST MINDING MY OWN BUSIN---SQUIRREL!!!!

Things are getting back to normal around here. Well, our normal, which of course is very different than a lot of people's normal. I have to remember that g-tubes, trachs and various pieces of respiratory equipment for an 11-year-old nonverbal child is not considered society's "normal." It just happens to be what we're used to, our perfectly normal lifestyle. Colby went to school both yesterday and today. He had decent days, not great, just decent. The mornings have been rough on him. Once he gets up in his wheelchair and rides the bus, which is pretty much a giant, yellow shaky vest, on top of having extra drainage from his head cold, the secretions are a bit much for him. He's having great afternoons, though, while at school. So I hate to keep him home if it's a matter of just coughing/clearing extra secretions. For the most part he's back to usual jabbering, cute-as-a-freaking-button self. I don't know. It's the never-ending parent dilemma, figuring out what is best for our kiddos. Doesn't it wear you out sometimes?!

I've been able to catch up on a few things around here. I worked over the weekend, so nothing much got done then except for the usual taking care of Colby stuff. I still need to go through the mountain of mail that has accumulated over the last couple of weeks. Of course that's the task I've saved/procrastinated, and now it's on my last nerve. Maybe if I have some time tonight I'll start on it. After the Biggest Loser premiere goes off, of course. Not missing that for anything! Love that show, have never missed an episode. Got out a few Halloween decorations today. More to go up as the week progresses. Only 15 days until Halloween, yippee Skippy! The one day of the year when it's okay to dress up and act like something/somebody you really aren't. Who doesn't love that? Time to carve pumpkins, make applely, cinnamony, pumpkiny, yummy treats, watch scary shows. Oh, and the weather is going to get cooler in the next day or so. Good stuff, love it, really I do! We have to get on the ball so Mr. Colby can pick out his costume. He's already said he wants to be something scary, not funny. I guess the days of being a duck, Elvis or a cowboy are over for him. I think he would make the best vampire ever. Last year I couldn't talk him into it, he was zeroed in on being a zombie. But let's face it, he did make the cutest/scariest, best damn zombie ever.

I was sitting here today at the computer doing something very important. Okay, not really, I was Facebooking probably. When out of the corner of my eye, it caught my attention. Had to do a double take. There is an albino squirrel that hangs around the apartment complex, and it was right outside on the wheelchair ramp. I've been dying to get a picture of that weird thing. And there is was, right there, and I missed it! Couldn't get to my camera fast enough. So there I was, tiptoeing around outside in my sock feet with my camera, looking for the white squirrel. He was long gone, though. I'll get him one day, don't you worry, the creepy little yard rat.

Going to wrap this up for now. I made stuffed peppers for supper. They smell pretty darn tasty, so I better go check them out. Girl gotta eat! Bye for now.

CAMPING TRIPS ROCK - HEAD COLDS BITE

Camping was great. Or at least I think it was. I mean, it was, but it had some moments. Mainly I had some moments. I was sick the entire time we were gone. Woke up Friday feeling yucky, and stayed yucky, and am still yucky a week later. Colby started getting sick Monday. Head colds, both of us. Yeah, I'm over this shit for real. Colby was supposed to have school Wed, Thur and Fri this week. I kept him home Wed, then sent him Thur. This was a mistake. His numbers were crappy while he was gone, and he even cried at school a little. He kept telling his teacher on his eye gaze, "I'm going to tell you how I feel. I am really sick." Then he was picking various body parts, saying they were bleeding or they ached. God love him. Kept him home today. Finally got a doctor to agree to an antibiotic, so we started that today. We've done IPV and CoughAssist treatments around the clock, every 4 to 6 hours, since Monday. He had hit and miss symptoms. He had a mild fever that came and went. One day his oxygen would be low. One day his heart rate would be high. One day his trach secretions would be thin, one day they were thick and yellow. Get the picture? It's been a mess. I've been hacking my head off, practically ODing on plop-plop-fizz-fizz Alka-Seltzer and cough drops, tired from getting up with Colby through the night. Worried about Colby. He has been sick, but a different kind of sick. Usually Colby is either perfectly fine, or sick in the hospital with pneumonia. There is no in-between with this kid, usually. So him being "just" sick with SMA and a cold has thrown me off a bit. But we survived the week somehow, and now I think we're both turning the corner and starting to feel better.

Back to camping. Overall it was fantastic. I loved the opportunity to get Colby out of the apartment for a few days and visit with the family. We had one day of sunny hot weather. A couple of days of rainy weather. One day of cold weather. Just as the saying goes: don't like the weather in southern Indiana? Just stick around, it'll change in 10 minutes. We went for a nice walk. Colby loves to just lie around and watch the campfire. I swear he is totally mesmerized by it. We were able to get in a cookout/picnic between the rain on Saturday with Mom, Kenny, their friends who were camping 2 spots down from us, and my stepbrother and his family. This is really what I wanted to do while camping, so I'm glad we got it in. Colby sat up in his chair and used his eye gaze to communicate with everyone. We did the hot dog/s'mores gig around the fire. We tried to sit around the fire and visit some more, but the rain set in again. We were trying to hurry and get Colby under cover, but his wheelchair got stuck in the wet ground and/or wet leaves. The tires were literally spinning, while I was "giving it gas" and the others were pushing him out. Nice, really nice. It was worth it, though. I loved every second of it. Sunday we stayed in the camper because the weather was for crap. Made Colby watch the Colts game with me. Then he watched Spongebob and I watched more football. We needed to be home Monday at 3:00ish because the wheelchair dude was coming to make some adjustments to Colby's chair. We got up and made a fire so my little pyromaniac could watch the flames. I had a couple s'mores for the road, then we headed home. By the end of the night, Colby's nose was pouring snot and his illness started.

So I think that about catches you up for now. In spite of me feeling like crap on a cracker and the weather not being all that cooperative, the camping trip was still fabulous. I don't know how many more camping trips we'll be able to have in the RV  L Colby is getting too dang big, and so hard for us to get him in and out of the motor home. We'll have to see what next Fall break brings us, I suppose. If there's any way to do it, we'll figure it out. We always do. Going to bed soon, then getting up at midnight for Colby's cough treatment. Have to get this kid well, ASAP. Too much school to be attended and Halloween festivities to do in the next couple of weeks. Now that I'm feeling better, I'll update a little more. I know you've all missed us terribly haha.

 

 

 

BITS OF PIECES OF OUR CRAZY LIVES LATELY

I'm going to make this short and sweet, because I'm tired and want to go to bed. I'm good. Colby is good. Bye.

Just kidding. I have a little more to report than that. I've been busy as crap lately. I said if I could just make it through September I'd be okay. And I did! With training for my new job, picking up a few extra hours at my old job, and working my first official weekend as the new "pharmacy counter technician" I've been a little cra-cra cuckoo. I worked 6 days in a row and took care of all things Colby, so yeah, pretty much running myself ragged. But now my schedule is back to normal, or a new normal I should say.

Colby is doing fabulous. He's had a great week at school. Today they went on a field trip to the zoo. Tomorrow is his last day of school for the week, then he's on Fall break until next Wednesday. I'm hoping now that my schedule has lightened up a little, I can get back to redecorating his room. That just got put on the back burner with everything else I had going on. I also want to get busy putting other/new stuff on his eye gaze. He's using the heck out of it, and I couldn't be more pleased. Time to kick it up a notch. And now for the really good Colby news…drum roll please…he drove his power chair FORWARD this week. Once in gym class, then again up and down the hall at school. Now that's news! It's wonderful that others are finally having expectations for him. That's what he needs, someone else to push him besides his mama.

We're going to spend Fall break camping with Mom and Kenny, and I can't wait. You know what I'm going to do while we're there. Nothing, as little as possible, relax. Visit. Spend QT with my sweet boy. Go for walks. Read The Hobbit to him. Make s'mores. Take naps. Visit some more. I'm not forwarding my home phone to my cell. I'm not taking my daytimer.  I'm not taking the mail to sort. Besides Colby's daily routine, we have no set schedule. I need a few days of R and R. And football. I want to watch lots and lots of football. Colby's nurse helped me get a bunch of stuff together tonight. It's all sitting here in front of the TV, waiting to get packed up tomorrow. It'll take me all day while Colby is at school to get us packed up and ready. Then he'll get home from school. We'll feed him, do a routine trach change. Do his IPV and CoughAssist treatment, and hit the road. Aaaaah, let the mini-vaca begin.

That's about it I guess. I know it's not much detail, but I'm tired and want/need to get in bed. I'll be blogging again soon to report how the camping adventure went. Good night, all. Remember to count your blessings.  

THE "F" WORD

No, not THAT "F" word, get your dang mind out of the gutter. These "F" words:

FOOTBALL - Anyone who knows me knows I get giddy when football season rolls around. Not many sports to watch during the summer - baseball, golf, tennis. Eh, no thanks. Give me touchdowns, helmets, the Colts (they won today by the way), and a TV remote and I'm good for a whole weekend.  

FALL - Happy Fall is Officially Here Day! Absolutely love this time of year, my favorite season by far. Goodbye hot, humid, sticky, nasty weather. Hello crisp, cool temperatures, sweatshirts, Halloween, bonfires (somebody needs to invite me to one just sayin), pumpkin and apple-flavored food and drinks. It all brings me much happiness.

FRIENDS AND FUN - My BFF and I packed up and headed to Lexington (about 80 miles away) yesterday for the Blake Shelton concert. Had an absolute blast. Met some friends for drinks and dinner before the show. They dropped us off at Rupp. It was an awesome concert, Blake put on a good show. Met up with some other friends after the show for more drinks. Got a taxi back to the hotel. Yep, that's right, I left Colby overnight again. Two times in 2.5 months, that's just crazy talk. It was so nice spending time with my bestie. Just the 2 of us, being our usual goofy selves. Ready to do it again soon!

FIVE - The number of days in a week Colby has gone to school the past 2 weeks. All 5 days, Colby you are so awesome. He had a really good week at school this past week. I never thought I'd see the day when he could go to school this much. There are some nights he's definitely tired, but not over-the-top tired/exhausted. Such a big boy. Very, very proud of him. Another F - FUNNY eye gaze story. They were in class one day, and one of Colby's classmates, well, no other way to say it, farted. The kid passed gas right in the middle of class time. Colby looked at his eye gaze and said, "really?" Is that not hilarious?! I said oh he did not, and his nurse said, yep, he certainly did. Never a dull moment in that classroom for sure.  

FORWARD - The direction I wanted Colby to drive his chair today.  As in okay Colby, you are to follow directions and drive straight ahead to the end of the parking lot. What Colby chose to do was right turns, left turns and playing with the recline and leg rest functions. He was told ahead of time, look Colby, you have a choice. Do what's asked of you, drive forward, plain and simple. If you make the choice not to do it, your punishment will be no Spongebob for the rest of the night. Thank goodness Colby's nurse is here because we're kind of making her out to be the bad guy. Colby had 20 or so chances to drive forward, he chose to do the other stuff. Hence, therefore, as a result, no Spongebob for you, little mister. Then on his eye gaze he said, "come, dad, dad, dad, Spongebob." I'm like oh heck no, Colby. There is no going to your daddy and getting out of this one. This is the decision you made, deal with the consequences. This child's stubbornness is wearing this mama out!  

Time for me to get to watching the football game. More in a few days when I get some time or something worth blogging about occurs, haha.

HAPPY DAYS LATELY

I have good news to share. Isn't that a relief?! You can read a nice, peaceful blog update from me for a change.

So I guess in some cases the squeaky wheel really does get the oil. Or in this case, the bitchy mom gets the supplies. After many unpleasant phone calls and stern voicemails, the trachs that I ordered for Colby on August 16th were delivered yesterday. Yep, a full month later. Oh Apria, how I love dealing with your constant screw-ups. But, we do have them in our possession and can use them for Colby's biweekly trach change tomorrow. My mom wants to do his trach change this time, just in case she would ever have to watch Colby in case all 5 nurses were unavailable. Hey, believe me, that has happened. Go Linda, you'll be fine!

There was a screw up getting the saline bullets for Colby's nebulizer and IPV treatments. Insurance didn't approve them, but Passport did, but not for the total number we need monthly. So I was having to buy the remainder out of pocket. Then it seemed like we were getting fewer and fewer paid for. Just a mess. So I called insurance and said yo, what's up, why are you not covering this expense? Stupid ass customer service rep proceeds to tell me sterile saline packaged in 3 mL individual capsules is an over-the-counter medication. What a moron. I simply said, I assure you they are not. I cannot walk into my local Kroger and buy these off the shelves. She continued to argue with me, which only pissed me off royally. I had not only the pulmonary nurse call her back, but also a pharmacist at Kroger to get the crap straight. The crap is now straight J Went to Kroger and picked up 450 saline bullets for the month ahead. Aaaaah, it's the little victories that bring me such joy.

And last but not least, we are now getting Colby's Mepilex Lite covered by insurance. This is a biggie. The stuff is major expensive and Colby uses the crap out of it. But of course it didn't come without several problems, too. Called insurance (you seeing a pattern of how I spend a great deal of my time?) and said hey, is this covered or not? Insurance customer service rep dude says yes, I say great. There was an issue on whether or not we would have to pay co-insurance on it. Another couple of phone calls. Was finally told yes, Mepilex Lite is covered by Colby's insurance, and no, we wouldn't owe anything. Good gravy, finally! Would you just ship the stuff already?! Oh, they sent a shipment…of regular Mepilex, not the Lite. Well shit the bed. Called again, said this isn't correct. They said they would ship out Mepilex Lite. Super duper. The next shipment we got was for Mepilex Lite Border, not just plain Mepilex Lite. I'm not making this crap up, I swear this is exactly what happened. So, 3rd time is a charm, we received a shipment of plain old Mepilex Lite a couple days ago. For the love of corn, how hard can it be?

I've had a great birthday today. Got lots of calls, cards and texts, which all made me smile. I'm surrounded by a lot of people who truly care about and love me. Good grief, what more could I possibly ever want/need? Okay, not going to lie, I bought some lottery tickets, because I want/need money, any form or any amount. Colby's nurse brought me a big birthday cupcake, and my boss at work got me some banana pudding. Went to Smokey Bones with my BFF Kim. Colby gave me a beautiful bracelet and a super big, cool coffee mug. Aaaaah, such a sweet boy. Got a mani/pedi from my dad, and my mom is getting me a much-needed pair of tennis shoes. Mine have had the lick. Oh yeah, and my stepdad took me to Red Lobster the other night for endless shrimp. Me, spoiled? Maybe just a tad. But I'm worth it, dangit.

I'm tired. So tired I'm not even going to stay up and watch Duck Dynasty. Off to bed I go. Must be on my toes for another day of training at the new job tomorrow.  

QUICK UPDATE, CUZ I NEED SLEEP

Why don't I just do blogs every day, or at least every other day? It's so much easier for me that way. I haven't blogged in over a week, so I'm sitting here thinking, what should I talk about? What should I talk about the most? What should I talk about the least? Do I start from last week and work my way forward, or update from today and work my way backward. Yes, this really IS how my brain works. As one of my BFFs put on Facebook a couple weeks ago: sometimes I feel more confused than a mood ring on a schizophrenic chameleon in a bag of Skittles. That cracks me up, it's so me! You know, our lives are so stinking exciting, there's sooooo much to discuss (sarcasm). So here comes an update, in no particular order, no rhyme or reason.

I survived new employee orientation last week. Barely, but I did. It was excruciatingly painful. Anyone who has been forced to go through these stupid things knows exactly what I'm talking about. Nobody, and I mean NOBODY, wants to play get-to-know-you bingo at 7:30 in the morning. But I did it, and now I'm an official employee of the hospital. The best way to summarize my new job is holy shit. Very fast paced, very detail oriented, a lot to learn, and on my feet all day. OMG what have I gotten myself into?

Took Colby to the Center for Courageous Kids camp this past weekend. We love this place. This was our 3rd time going. Honestly, we were this close to not going. Another lovely requirement with my new job was I had to have a Tdap booster shot, which made me feel extremely yucky for about 36 hours. Flu-like symptoms and very lethargic. I thought there is no way I can get this kid to camp. Plus my BFF Kim was going with us, as she has all the other times, and she had to work later than expected. But we rallied. Loaded up the van and headed to Scottsville, KY for camp. It's a major amount of work, but it was so worth it. On Saturday, Colby got to visit with friends. We went to arts and crafts where he made a Spongebob sponge character. How fitting for him, huh? Then we off to horseback riding. This was also Colby's 3rd time for that, but I'm telling you, it's nerve-wracking. He did great though. Then it was off to the lodge for lunch, then nap time. Any camp that has a built-in nap time is okie-dokie by me! After siesta Colby had his 1st fishing adventure. Look at the fish he/we caught! Then we went bowling. Headed back to the lodge for supper. They had a movie night afterward, but we were just to pooped to pop. We went to bed instead. Got up the next morning, had breakfast at the lodge. Colby played his 1st game of Yahtzee. Then we packed up and headed out, got home about 4:00. It was a busy, exhausting weekend, but it was AWESOME. Colby did so well. Can't wait for next year's camp to roll around.  

Okay, it's after 11:00 and I'm tired. Very tired. And 5:45 will be rolling around before I know it. G'nite, chaps, and toodles for now.

 

MONDAY'S MEMO

Going to try and do an update. Forgive me if I'm even more scatterbrained than usual. Actually even a good bit nervous at the moment. More about that later, though.

Our weekend was decent. Nothing earth shattering. I worked Saturday during the day. My brother, sis-in-law, nephew and niece were in town for my nephew's cross country meet, so they stopped by for a visit. This was a perfect opportunity for Colby to use his eye gaze. They had never seen him use it before. I was encouraging Colby to say conversation-appropriate things on the eye gaze - what's up, hi, how are you, etc. He didn't really do a lot of that, but he did use it, and that was just fine with me. All in good time, I'm convinced.

Sunday I had Colby all to myself. Aaaaaaah, peace and quiet, my FAVORITE times nowadays, Colby and Mama time. Colby's dad was out of town, so he wasn't here for his weekly 3-hour visit with Colby. I told the nursing agency, no need for a nurse either. He has been gunky as all get out lately. He's at the end of taking his antibiotic, so you would think he'd be all better. I came to the conclusion that it was time to start the Robinol back. Oh boy, here we go again. But I really didn't have a choice. He has been struggling to sit up without choking, and his secretions are everywhere. So I'm starting out a very small dosage, 0.5 mL 4x daily, and we'll see how it goes. Just can't find that balance between drying up Colby's oral secretions and not drying up Colby's trach secretions. The fun never ends around here.

Today I worked. Nothing like laboring on Labor Day I suppose. Then the night nurse and I gave Colby a bath. Can't have him stinky you know. Tomorrow I start a new adventure. Here's where the nervous part comes into play. I'm starting a new job at the hospital. Not giving up my part time pre-pack job. This is in addition. Super excited about it, yet super nervous at the same time. As long as Colby stays healthy enough, I'll be able to do it. All day tomorrow and Wednesday I have orientation. Yuck. I mean super yuck. I went through it 5 years ago when I was hired for the pre-pack technician job. It's super sucky. But I'm not looking at it that way. I'm going into this with a good attitude. First of all, I'm getting paid for going to orientation. Second of all, this is a very good step in the right direction to make a better life for Colby and me. Thirdly, I'm getting paid for going to orientation. I can do this! New adventure, here I come! Send some good luck vibes my way if you have time. I'll let you know how it goes.

QUICK EYE GAZE STORY

Lately we've been sure that Colby uses his eye gaze more. Actually we've just put it in front of him more. That way if he wants to explore or "talk" on it, he can. So today he was watching a Spongebob DVD and it started sticking, so I stopped the DVD player and turned off the TV. Colby is perfectly capable of turning the TV off and on, along with changing the channels and turning the volume up and down. I was in the bathroom getting ready to go out for dinner (yes, I actually had plans; no, I didn't have a date, just out with my BFF Pam.) I hear Colby in there whining. Unacceptable. So I went in there and said look Colby, can the crap, stop crying. You're not helpless here, kiddo. Either turn on the TV with your eye gaze, or use it to tell us you need help, and we'll help you. After that he said, "about-Spongebob-help-help-Spongebob." My child is brilliant I tell you, a freaking genius! So I said see, that's exactly what you needed to do. Then I turned on Nickelodeon, Spongebob was on, and all was right with the world once again. Looking forward to the day when he is able to fully communicate his thoughts and needs. Go Colby, go Colby, get your eye gaze on. This is one proud mama here reporting, over and out good buddies.