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?