LIFTS, LIGHTS, LOVING THIS HOUSE

My absolute favorite trim carpenter/handyman got some major stuff done around here through the week. The living room TV and sound bar are now mounted above the fireplace. Beautiful. He also framed out and installed the side door to the garage. We still need the 2 big garage doors replaced, but at the moment there is too much stuff in the way! My mom and I have spent numerous days and hours working in the garage trying to get it cleaned out and better organized. We're pretty close. I think a couple more hours and it'll be ready for Cunningham Door to come and install the new doors. The biggie to get done is the deck and ramp. Yep, this project is still not done. I'm not sure what went wrong at the company that said they would donate the deck and ramp. First we were told it would be done mid-August/September. Then we were told the job would be done before we moved in mid-November. Well, it's still not done. Just not happening with this company I guess. I can't get mad though, when I think of all the materials and labor that were donated and did actually happen. As a matter of fact, we have another organization that has offered to do the deck and ramp. That's exciting news! Not getting my hopes too high, but it sounds like they want to get started soon. Hoping to meet with them here at the house on Monday to talk about it all, and we'll take it from there. Fingers crossed it actually happens this time!

The other biggie that did get done this past Wednesday - we got the ceiling lift system installed in Colby's room. Oh boy, oh boy, oh boy! It's wonderful!! Fantastic! Freakin' awesome! See pic below. It has made transferring Colby in and out of bed to the wheelchair and the shower sooooo much easier. Love it, absolutely love it! We made do at the apartment, but this house has opened new, easier ways for us to take care of Colby, and I'm so very grateful for that. It just gets better and better around here as our to-do list for the house gets smaller and smaller. Hoping to get all the biggies done by the end of the year.

Let me tell you what my sweet, yet sometimes rotten, child did. I got a text from his school nurse Friday saying Colby's heart rate was high. Like 140. That's waaaay too high. They put him on the changing table and let him rest. Tried to get him back up in his wheelchair. HR went up again to 120-130. Then the nurse text and said Colby was crying. So of course I'm thinking he's sick, maybe a headache or maybe working on a plug. Hard to know really. But I couldn't let me sweet boy at school with a high heart rate and crying. So, right in the middle of working on the garage, I left to pick up Colby and the nurse. The nurse said the moment he told Colby I was coming to pick them up, the tears stopped and his HR went down to normal. Are---you---kidding---me?! So basically Colby played all of us Friday with his fake high HR and fake crying. Of course he was fine the rest of the day. No problems whatsoever. We took him to Great Clips for a haircut, no problems. Gave him a shower, no problems. He is such a stinker sometimes! I didn't know whether to laugh at him or get mad. I just shook my head and went on.

We're watching Elf. Every line of that movie is my favorite line! “The best way to spread Christmas cheer is singing loud for all to hear.” “We elves try to stick to the four main food groups-candy, candy canes, candy corns and syrup.” “You're a cotton-headed ninnymuggins.” I could go on and on. I took Colby out around dusk for a walk to look at some Christmas lights in the neighborhood. We love where we live! We're so happy here. I know I've mentioned that a time or two, but this house is truly wonderful and a perfect fit for us.

Better get going. Colby is looking sleepy and still needs trach care and teeth brushed. And I want to watch the rest of the Iowa/Michigan State game. Hopefully tomorrow I can find some time to drag out some Christmas decorations. 

This lift system makes transferring Colby much safer and easier. It's the bees' knees!

HOW HAPPY ARE WE RIGHT NOW? VERY, VERY

We are just as happy as can be around here. All is well and right in this mama and sweet boy's worlds. Last week we hosted Thanksgiving. I think there were 20 of us. No way we could have ever gotten half that many in our former apartment. Guests included my parents, aunt, cousin and his family, brother and his family, longtime friends of the family and a couple of Mormons (long story.) The food was delicious and the company was fabulous, too. I was so glad to be able to host a holiday at our home instead of having to pack up all of Colby's stuff and travel with him. So much easier on Colby and me if everyone comes to us. We divided the cooking chores among ourselves. Only thing I had to make was my famous, super yummy carrot cake. Somehow we ended up with a ton of extra turkey. Guess my dad should have only fried up one and not two! Oh well, don't think I didn't Ziploc baggie up the extra and throw it in the freezer, because I most certainly did. I would love to learn how to make yeast rolls between now and next Turkey Day. We'll see. Not like I can't find enough stuff on any given day to keep me busy and practically cra-cra. Still don't have everything right where it needs to be. Took me forever to find the potato masher on Thursday. But eventually it showed up, just like my checkbook did after being MIA for over a week. I'll be very glad when things are a little more settled and organized around here. We've made leaps and bounds in those categories, just need to keep pressing forward until it's all done.

And, as of today, I am officially a homeowner again! After almost 9 years of being in an apartment, I am now the proud owner and mortgage payer to the most perfect and beautiful home for Colby and me. The original plan was to put Colby on the bus at 9:15. Nancy and Darrell were going to pick me up at 9:30 and we were going to ride together to the closing. Nope, NEW PLAN! Colby's nurse called off sick today, so he wasn't able to go to school. Called Nancy and Darrell and said hey, guess what, kid is going to the closing with us! No problem. They were very helpful in loading Colby's equipment and getting Colby into his wheelchair. The closing was a breeze. All the papers were drawn up. Everybody knew what was expected and bing-bang-boom, 20 minutes later I had signed the mortgage papers. Also got my homeowner's insurance all lined up and an amortization schedule for payments. Hopefully I'll be able to pay some extra towards the principle here and there. That's my hope anyways. Talk about Santa coming early. I bought a house! I had thoughtful, generous, caring people to help me get it upfront, along with tons of donations of goods and labor to get all the work done, but yes, I'm a homeowner again and man, does it feel awesome. Colby and I are truly blessed beyond words to have this opportunity.

I was trying to get Colby to watch Supergirl. I thought he would like it. You know, cute girl in a cape flying through the sky saving people. Nope. I can hear him down there fussing like crazy. Better go change the channel before he sets off his high heart rate alarm! More soon. Again, please, please know that if you donated to our house fund in any way, how very much it's appreciated. I love this house. Absolutely love everything about it. Colby and I are so happy here. Thank you, THANK YOU, THANK YOU to everyone who took an interest and helped along the way. Every time I look around the house, I am reminded of how much help we received to get us where we are today. I am feeling the love, that's for sure.  

Last Wednesday, Colby was helping me make carrot cake by using his switch to run the mixer. 

The gang's all here. Turkey Day 2015.

 

 

 

 

 

 

 

 

 

 

 

Signing the mortgage for our house today! 

 

 

 

ANYBODY ELSE GOT THE MONDAY BLAHS??

Well, I should be going through this mountain of mail that has piled up over the last couple of weeks. It looks daunting, indeed. Instead I've been goofing around on Facebook and totally not doing what I should be doing. Imagine that!

Sent Colby to school today. He is better, not back to 100%, but much better. His secretions are still yellowish but he seems to act like he feels fine. A big determining factor for how Colby is doing is how well he tolerates sitting up. Saturday he sat up for 2 hours and yesterday he sat up for a little over an hour, both times with no problems. So I thought he would do okay at school today. When the nurse was doing his CoughAssist treatment, Colby coughed up a large hunk of something. His oxygen dipped down to 49. Yes, it happens that quickly! But then as soon as the nurse suctioned his trach and removed it, his oxygen stabilized. Since then he's been just dandy. I assume an oxygen drop like that wears Colby out, so I strongly encouraged him to take a nap today. In other words, I turned off the TV and lights, scooted him over in his bed, and curled up next to him. I don't care if he's 13 years old, you're never too old to snuggle up with your mama! We had 25 minutes before his afternoon respiratory treatment was due. Perfect for a quick nap. Nope, not that kid.

Had a follow-up endocrinology appt today. I had my blood drawn at my dr appt last month with my family doctor. Of course they were supposed to send the results to my endocrinologist. But did they?! Noooooo. Family doctor had called to say my levels were high and to cut back on my levothyroxine dosage. Uh no, I'll follow my endocrinologist's advice, thank you. So as soon as she gets the results, she'll call and let me know if we need to make any changes. Seems like we've been constantly changing my dosage since having my thyroid removed. I just want my energy level to return halfway to normal. Tired of being tired all the time. Need to get more focused on taking better care of myself. Yeah sure, I'll squeeze that right in. Eventually it's going to have to be a priority, but I swear, right now I can't handle the thought of one more thing to keep track of and/or do.

They came today and finished hooking up/turning on the whole house generator. Oh my goodness, I'm so relieved to have something like this as a backup for Colby. With all of Colby's medical needs, a backup generator is pretty much a necessity. At the apartment, if it started storming or icing, our backup plan was plug everything up and just pray the electric stayed on. The generator was paid for by the Molly Johnson Foundation, and Corrigan Electric donated the labor for getting it installed and up and running. What piece of mind we'll have if the electric goes out! This has greatly approved our quality of life and is much appreciated.

I'm at the kitchen table typing this, listening to Colby's nurse talking to a new nurse who is training/shadowing here. Yes, I agreed to letting yet another nurse come here and help with Colby. Honestly, it's against my better judgment. I counted it up. In the last 12 months, we've had 14 nurses come to our home to take care of Colby. And of those 14, do you know how many are still with us? The original 2 we had at this time last year. Holy shit on a shingle, are you freaking kidding me?! I don't know if she'll work out of not. Honestly, I'm just not in the mood to deal with someone else taking care of Colby at the present time. Blah. If there wasn't so much to get done around here, I'd probably tell the nursing agency to stick it where the sun don't shine.

We'll be scheduling the house closing very soon! In a matter of a couple of weeks, I'll be a homeowner again. So exciting! I'm in the process of shopping around for homeowner's insurance. We'll also get the utilities changed over to my name sometime this week. Baby steps. Slowly get there, but we are getting closer to being moved, settled and officially homeowners!

Okay, now that I've wasted some time blogging, think I'll go watch some of the Bengals game. Maybe at halftime I'll get some mail sorted. Looking doubtful! Very doubtful. But you never know, I may get a burst of energy to get something done. Bye for now.

LONG UPDATE - LIFE IS GOOD - CRAZY AS $&*! - BUT REALLY GOOD

Wow oh wow! The last week sure has been a total whirlwind for us. I've experienced every emotion you can imagine lately. I've been happy, stressed, worried, overjoyed, exhausted, exhilarated, thrilled, amazed, humbled, glad, and the list goes on and on. My brain is churning with thoughts and emotions lately. Let's see if I can sort some of them out.

The big news is...we are moved! Today marks the 8^th day Colby and I have been in our spacious, well-lit, functional, beautiful new home. And yes, I'm a little on the biased side, it is absolutely beautiful. Sometimes I have to remind myself this is our new residence! It's like we're on vacation or house sitting or something. The move went very smoothly. Since we moved only 3 miles down the road, we were able to take things over here and there as they were ready, so I tried get packing done ahead of time. Sorted through drawers and closets and get rid of things we didn't need. I had 8 people help me Thursday before last move the first load of big stuff. I had help in setting up my new kitchen. Friday before last, more packing, moving boxes and some small furniture. The shelving company that installed Colby's unit came, uninstalled the shelving, brought it over and put it up in Colby's new room. Oh my, that sweet boy has soooooo many supplies! Then last Saturday was the BIG day. We got most everything else out of the apartment, and most importantly, got Colby's hospital bed moved. Let me tell you, that was a challenge! I knew it would be. We tried to keep it as assembled as possible. It took 5 men to move the columns and motor into the house. But they did it, and Colby and I were able to spend the first night in our new home last Saturday. Then last Sunday some of us went back over to the apartment and got every last item out. At that point, there was no organization, just throw the crap into boxes and let's get out of here. Are we totally moved in, unpacked, organized with pictures on the walls and a place for everything and everything in its place? Don't be ridiculous! Of course not! Colby has what he needs and that is what's most important. The rest can happen slowly, which it is. Seems like daily we get a couple more boxes unpacked, figure out better logistics for something, etc. Time to get ready for the holidays you know! Colby and I are hosting Thanksgiving and I can't wait to have my family here to share our new home. I might be serving turkey from the deli sandwiches and Stove Top. I'll figure out something! Having the family here will be so much easier on Colby. I feel thankful for every day I have with Colby, my family and friends, but of course this year will be extra special for us here in the new abode. I turned in the apartment keys last Thursday, and man, that was an excellent feeling. So long old, cramped, dim, yucky apartment. Sure won't miss you one bit!

Then came along the green snot and camera crew! Whaaaaat?! Colby is trying to get sick. No, no, NO! Could be the change in his environment, could be the change from warm to cooler weather. Who knows. They had to do an emergency trach change at school last Wednesday. I left work early to pick Colby and his one-on-one nurse up after that. And oh yeah, I'm pretty sure I had a panic attack in the parking garage at work. Those just are no fun at all. His trach secretions were so thick, dry, almost nonexistent, and that ain't good. Then the next day, it was like a switch. Colby's secretions were everywhere! I don't know the last time I wiped and suctioned the child's nose that much. Secretions went from thin and clear to thick and yellow, then started seeing some green and also a tinge of blood in his trach. Time to initiate sick-kid protocol! Got up through the night and gave him an extra IPV and CoughAssist treatments. Kept him home from school Friday and took him to the pediatrician's office. He's doing a round on Omnicef, and hopefully we've caught this whatever-it-is early. Can't have my sweet boy sick around the holidays. No, no, NO!

Then I get a call from the couple who helped us get the house that WAVE3 news wants to come out and do a Feel Good Friday story on us. About how they helped us get the house, all the donations we've received, etc. OMG you have got to be kidding me?! On top of moving and all the details of that, along with Colby getting sick, a TV station wants to get all up in here and film us?! At first I made it very clear I didn't want to do it, especially with Colby not feeling well. But then I figured what the heck. At the very least I was hoping to bring awareness to SMA. And if we received extra donations for the house, that would be hunky-dorry, too. So we did it. Got home from the pediatrician's office Friday and had 3 hours to get the house looking better, get Colby and me “camera ready.” Holy crap on a cracker, we've been so busy lately! My advice to you, if you come over anytime soon, would be don't open any closet doors, as you are at great risk of something falling on your head for sure. I was slinging stuff in closets like somebody was paying me to do it! The newsman wanted that “just moved in” look for the article. Well, no problem there, because we just moved in for crap's sake. We don't even have TV's hooked up yet. They interviewed Colby and me, then Nancy and Darrell, the generous, wonderful, sweet, caring, giving, amazing couple that has helped us not only get this house, but also all the in's and out's of redoing it. That dude interviewed me for 30 minutes. I teared up ONE TIME, for about 3 sentences, and of course that was what he chose to use in the piece. Ugh. Whatever. I'm just glad it's over. I was a nervous wreck.

Yesterday was Colby's D (diagnosis) day. It was 13 years ago yesterday that I was told Colby probably had SMA Type I. I was also told he would die by the time he was 2 and that there was no cure or treatment for his disorder. The shithead neurologist told us there was no hope and there was nothing we could do. No matter how hard I try, or no matter what other wonderful things we have going on at the time, November 14 creeps up every year and bites me right in the butt. Every emotion you can imagine was in full force yesterday. I tried to stay busy, tried to think of the good. But at times those overwhelmingly sad and fearful emotions came flooding back. Obviously that craphead neurologist (still can't stand him to this day) didn't know us very well, did he? Within 2 weeks of Colby's diagnosis, we were scheduled with the wonderful doctors at Cincinnati Children's, who had options for us instead of hopelessness. We also met an amazing SMA family here in Kentucky who lived close. They showed us how to not only survive SMA, but live a meaningful, happy life in spite of the odds and diagnosis. Colby has certainly come a long way. For that I'm extremely grateful. I really don't take anything for granted. Not Colby's health, not my health, not my parents' health and never-ending love, and not the unwavering love and support of countless family and friends. Thank you to everyone who has helped us, loved us, said a prayer for us, and supported us all these years. We sure keep it interesting, don't we? Time to inhale, exhale, just breathe, and make the next year the best one ever. Somehow I just know the months ahead will be fantastic for Colby and me. Bring it! We'll savor every moment and make many happy memories in our new home, I'm quite sure. Signing off now – time to get sweet boy up and ready for the day.

NEW HOME - ARE WE THERE YET?! ALMOST!!

Quick update while I watch the Broncos/Packers game and the World Series. Also watched the Bellarmine/U of L basketball game earlier. Ah yes, it's the most wonderful time of the year! Baseball is ending, football is in full swing, and basketball is starting up. Makes me happier than a pig in slop.

Monday I had to pick Colby up early from school. He was having trouble keeping his oxygen above 93/94 and his heart rate was higher than normal. That's no good. Plus his secretions were thick and stringy. Also not good. For the next couple of days, we gave him and extra IPV treatment each day. Tuesday it was cold, damp and rainy out, so I decided against taking Colby swimming. I'm sure he didn't agree with this decision, but I had to do what's best to keep him healthy. His speech therapist came over instead. She found him some games he could play through his eye gaze. He didn't seem to thrilled about playing them. I mean really? What 13-year-old boy doesn't like to play video games?! That would be mine.

Then the doozy came yesterday. I could tell when I was giving Colby his IPV and CoughAssist treatments something was up. I felt resistance when I suctioned Colby's trach. He was having trouble again keeping his numbers at average. Long story short, my mom and I ended up doing an emergency trach change for Colby. It's very seldom his oxygen drops dangerously low like it used to back in the “pre-trach” days. Saturday is dipped down to 31. Thank goodness it was only for a few seconds, although when that's happening, it seems like an eternity. There was a big plug on the end of Colby's trach. I thought oh hell, he's getting sick. Although his secretions were not discolored. Long story longer, his humidifier hadn't been plugged up for a couple days. Guess that explains the plug, huh? He's been fine since we fixed the problems yesterday. Sweet boy will keep me on my toes, for sure.

Notice I didn't say the nurse and I changed out Colby's trach. Probably shouldn't surprise you to hear this, but we've had another nurse quit. The nursing agency called and said she gave her notice. Not a 2-week notice, just notice she was leaving the agency. Perfect, just perfect. She was scheduled to work next weekend when we're supposed to be moving. I counted it up. We've had 14 nurses in our home in the last 12 months. Of those 14, we have 2 remaining. And those 2 have been with us the longest! One has worked here part time for over 2 years and the other one is our only full-time nurse. He has been with us about a year and a half. Makes me sick how these home health nurses have been. I'll deal with hiring and training a new nurse after our move. We'll just have to make due between now and then.

What about the house? We're getting so, so, so, so close to being ready to move! Last week was busy, busy. We painted the basement and scrubbed the floor down there. Appliances were installed. Fireplace was hooked up. Towel rods, door stops and toilet paper holders were hung. Lighting fixtures were installed. Flooring was installed. Counter tops were installed. Very productive week! I've been packing and organizing like a crazy fool around this apartment. Dishwasher needs to be installed, then it'll be time for the final inspections. Then once we pass those, which surely to goodness we will, we can start moving! We've also been working on building a temporary ramp to get Colby inside. Our deck and ramp won't be built until later in the month, and uh yeah, we sorta need a way to get Colby in the house.

Thank you to everyone who checked on Colby through the week. I thought he was getting sick. Then later in the week I started feeling icky. Not a full-blown cold, just super tired with itchy throat and a bit of a cough. I wasted no time. Started taking Emergen-C and diffused my OnGuard doTERRA oil. Drank more water and took my vitamins. I feel fine now. Tired of course, but I'll be that way until we're moved and settled.

Colby had trick-or-treat at his school on Thursday. No way could he wear the same Halloween costume twice! Oh no, that just wouldn't do around here. K-Mart had costumes half off, so I found Colby this one. It's called Soul Taker, but I told Colby since we were reading Harry Potter, we'd tell people he was a Death Eater. We didn't go out and do anything for trick-or-treat last night. Colby had had the choking incident and I was tired and groggy from taking sinus meds, so I was a lame mom and didn't take Colby out. Thought it would be best if we both stayed in out of the damp and rested. LAME-O! No use worrying about it now. It's over and done. Next Halloween I'll make sure I make it up to Colby.

Here are some pics. I'm getting in bed. I'll keep you posted on the moving situation. Hopefully it will be sooner and not later. We're so ready! 

 Love this little Death Eater to pieces!

Not to brag, but isn't our house looking amazingly gorgeous?!

HAVE I MENTIONED WE'RE WANTING TO MOVE?!

You know our story. We've been busy. We've had some good and some bad things happen over the last week. So let me summarize.

Unfortunately, I had to fire another nurse this past Tuesday. Trust me, I didn't want to. Long story short, his attendance and work performance have been crappy since July. He was a no call/no show for his shift on Tuesday. So bye-bye undependable nurse. I'm so disappointed, frustrated and upset. Another one bites the dust. Someone please explain to me why people can't show up for their jobs. I just don't get it.

Thursday we were putting Colby on the bus. Keep in mind, we have been putting Colby on the bus four days a week since August. From 9:15am-9:30am on Mon, Wed, Thurs and Fri, Colby is boarding the bus for school. It's not rocket science. So this jerkoff who has lived here for quite some time tries to back out around the bus. He ends up backing into the bus crossbar on the front, not once, but twice. Didn't even realize he did it. Then starts to pull off. So I run after him and get him to stop. I proceeded to tell him what he did. He then had the balls to say to me that he didn't have time to wait for us, we took up the whole parking lot and he had things he needed to get done. Oh no, you did NOT just say all that to me young man?! Let's just say it got ugly from there, and I'm pretty sure he won't be trying to back out around the bus again. So rude! Seriously, we can't move soon enough.

We (my dad, the nurse and I) took Colby to his ophthalmology appt. Colby wanted no part of any of it. The whole day he had a high heart rate. He wasn't exactly cooperative with the ophthalmologist. “Colby, open your eyes, buddy. Colby, I need you to open your eyes. Hey Colby, look here at the light, ok?” I know it stinks to have your eyes dilated, but seriously? Of ALL the stuff that Colby goes through, he gets a little freaked out about the eye dr? Crazy kid. His prescription was a little worse last year and is a bit worse this year, so we got a prescription and will be getting kid some new glasses soon. Took us a while to get back home, but overall it was a fairly easy day and I'm glad that's over for another year. I'm sure Colby is really glad that's over for a year.

Work is buzzing along on the house. The next two weeks are absolutely CRUNCH TIME! Our priorities for the weekend were first pick up everything off the floors, then sweep and shopvac the floors in preparation for the wood laminate flooring and carpet to be installed. How freaking exciting is that?! Floors!! They installed the teeny tiny floor in the half bathroom upstairs, I guess so the plumbers could go ahead and work in there. Tomorrow is going to be cra-cra busy at the house. The counter top is being delivered and installed. The appliances are being delivered, along with the flooring installation is starting. We're also trying to get the basement painted before we move in. What a difference some scraping and white paint can make! We should be able to finish that up tomorrow night.

I'd better get to bed. Need to get up and get me ready. Then get Colby up and ready for school. Then run a couple errands. Then off to the house to check out the progress throughout the day! We're still hoping to move on the weekend of Nov 7-8. That's our plan, and we're sticking to it. Could it be that two weeks from tonight, we'll be sleeping in our new, beautiful home? Oh my, I certainly hope so.

I went over to the house and took pics and video tonight. Will post some on Facebook and on this blog when I get a chance. Thanks to all you have followed along and supported us during our house journey. Starting to see the light at the end of the tunnel, and man, it sure looks good!

GETTING BETTER AND BETTER AROUND HERE

Hi everyone! In order to keep you in the loop of all things Amy and Colby, here's a wrap up of our week. Oh my, there's lots going on! Most of it ranging from good to down-right freakin' fantastic!

Colby has kept busy. Due to nursing issues, we haven't been able to go swimming lately. This was his first Tuesday getting back in 5 weeks I think. Of course he loved it, and I love taking him. Sometimes I have right shoulder and neck pain, and I swear getting in that therapy temp water helps with it. He also went to school the other 4 days. I think we finally have the school nursing worked out now also. I'm very excited to report that it has been over a year since my sweet boy has been in the hospital, and oh my goodness, am I thankful for that. Our lives are about to get very cra-cra very soon. We don't have time for illnesses! Not that we ever have time for lengthy hospital stays, but we really, really, really don't have time for them currently. We'll be heading up to Colby's ophthalmology appt this Friday. Luckily we are scheduled at the northern Ky location of Cincinnati Children's for this. Cuts about 15-20 minutes off our drive time each way. We'll take it!

I absolutely love this time of year, and this year is particularly special. With any luck, we will be moving soon! Like 21 days from now soon! Holy crap on a cracker, it's finally almost here! I'm thrilled, excited, stressed, worried, elated and overwhelmed all at the same time. We are sooooo close to finally, finally getting out of our apartment and into our beautiful, new, handicap accessible home! Work at the house was moving along. Not at a record fast pace, but things were getting done, so I was happy. Then we got an e-mail from the contractor and apparently he has the rest of this project all lined out. Well alrighty then! The trim carpenter, Charlie, is hustling to get his part done, along with many extra little to-do's that we've noticed need attention. Look at the work he did on our fireplace – it's absolutely beautiful. Everything he has done in our house has been A++, amazing, beautiful work. He's a one-man show and semi-retired, but it absolutely 100% has been worth the wait. Then the painter, Mark, follows behind Charlie and is finishing up the painting and staining. Come on fellas, trim, trim, trim, paint, paint, paint!

So here's the plan. This Thursday and Friday the laminate flooring and carpet will be installed, hopefully. Next Monday, Oct 26, the counter top is being delivered and installed in the AM, hopefully. In the PM, appliances are to be delivered, hopefully. You catching my drift on the hopefully stuff? Everything and everybody needs to fall right into place and stay on schedule. Then the next 2 days, the “big dogs” come back in and do their thing to finish up – HVAC, electricians and plumbers. Final inspections on Oct 29 and 30, then bing bang boom, we can start moving. We've given ourselves a few days cushion just in case something doesn't go exactly as planned. We also have to assemble a temporary ramp for Colby, as our deck and ramp aren't going to be done until November.

Now then, who is available the first week of November to help us move?! I'm starting to pack up some things around here as I have time to hopefully prevent insanity and exhaustion from setting in come Nov 1. We shall see. Really don't want to spend the money to to hire movers, so we absolutely are now taking volunteers to help us get moved. Like I said, I'm trying to get busy now and do what I can to prevent cra-craziness in the near future. Is that even possible?

Going to bed now. Good luck to me on getting my brain to shut down. Inhale, exhale. It's all going to be okay. It's all going to work out just fine. And, we're moving soon! There aren't enough exclamation marks to put after that sentence. So excited I can barely stand it. 

Told you it was beautiful. Every time I walk in the front door of that house, I think wow, is this really ours?! Colby is going to love, love, love this fireplace. 

 

 

 

Took Colby to the Halloween parade this past Friday. What can I say, we're adorable. Great parade, we'll definitely go again. We do love us some Halloween, that's for sure. 

HOUSE UPDATE - AMAZING!!

Lately the question(s) for me have been, how's the house coming along? When do you all anticipate moving? Well, these are all really good questions. Usually my answers are, coming along nicely and I'm note sure. We have made tremendous progress on our soon-to-be home. The property is going through a complete transformation. Before and after pics are amazing, and the house is unrecognizable from where we started. The work that has been done so far is amazing. The fact that I've somehow kept my sanity over the last 9 months is amazing. Now if we can just get through this final push, get the house DONE, and get us moved! Once we move, I'm sure it will all be very amazing, haha.

So what's left to do? Another really good question. We're in the final push. Down to the nitty gritty. Everything, inside and outside, is shaping up nicely. Exterior has been pressure washed and painted. We painted the house a cream color to match the brick accents on the front porch. Compatible cream - SW 6387 - as a matter of fact. And I must say, I absolutely love the color. We had landscaping donated, and so far the company has killed the grass. Guess they'll be coming to do more work soon. The interior is where the house is really looking fabulous. I knew this house would turn out “nice” and “pretty” buy Oh My Gosh!! It's absolutely beautiful!! And I'm not saying that because it's mine (ours, you know what I mean). I'm saying it because it really is BEAUTIFUL! Anyone that has seen it lately says the same thing. It has far exceeded any thoughts or visuals I had of how the final product would look. Yes, it looks amazing! All the tile work is done – bathrooms and fireplace. Kitchen cabinets are installed. Bathroom vanities are installed. Basement waterproofing was completed last week. Donated hot water heater installed. Whole house generator delivered and ready to go. Donated shelving has been installed in the closets. I'd say about 80% of the painting is done. The last few weeks have been a picking/choosing frenzy! We've picked out paint colors for all rooms and the exterior, faucets, carpet for my bedroom and the upstairs, lighting, house numbers, pedestal sink, figured out the shelving logistics, and several other details I can't even remember right now. The carpenter is finishing up the trim, then the painter can come back and finish painting and stain the steps going upstairs. Once the faucets come in, the plumbers can come back over and hook them up, along with the toilets. For the love of all that is good and holy, can we just get a working toilet in the house already?! We'll call the lighting company tomorrow and give the final light fixture decisions. Still need to pick out stuff like cabinet hardware, but I'm thinking around 95% of the choosing/coordinating/envisioning is done. Thank goodness, that was super hard on my little brain. I even had tons of help, and it was still taxing on my poor brain.

When are we moving? That seems to be the $64,000,000 question. Technically our apartment lease is up October 31. So that means a big crapload of work has to happen in the next couple of weeks, along with getting Colby's huge shelving unit moved from the apartment to the house, getting the duct work cleaned, AND packing us and actually moving. We currently have 2 big hold-ups. The counter tops are going to take longer to get in than we had hoped. Actually, if that's the only thing stopping us from moving, I say let's go for it and we'll go counter topless for a couple of weeks. However, we're also waiting on the deck and ramp to be built, and that's the biggie we of course can't be without. The time line for this was originally mid-August to mid-September. Now the company is saying sometime in November is the earliest they can get to it. Hmmmm, not exactly what I wanted to hear, especially since we need a ramp to oh, I don't know, get Colby into the house! The deck and ramp are being generously donated, so beggars can't be choosers, right? We're looking into renting a portable ramp for November in the hopes that if the deck and ramp are the only items we're waiting on the last week of October, we could still move. But honestly, I just don't know right now. The stars are going to have to align perfectly and some major work needs to be coordinated and finished to get us moved by October 31. I can rent month-to-month, so if we're stuck in this horrible, dingy, stupid ass apartment for a couple weeks longer, so be it. Not what I want of course, but it's not exactly something I can control either. I'm very grateful and we're incredibly blessed to be having somewhere to go soon, and I try to keep that perspective. But you can't blame me for wanting to hurry up and move into our new, larger, more functional, beautiful house. It's going to be what it's going to be, and I've had to talk myself into being able to accept the outcome. Bottom line, Colby and I have a beautiful new house waiting for us, soon. I didn't think this dream would ever come true, but it has, and it's been a wonderful, although stressful at times, experience I wouldn't trade for anything.

That's the scoop on the house. More updates soon. Can't wait to blog and say we're packing!

 Looking from the kitchen into the dining room, living room, hallway - February

Looking from the kitchen into the house now - October

February.

October. Is this even the same house?!

KID UPDATE

Overall Colby is great - freaking fabulous really. I never take Colby's health for granted, NEVER. I'm very grateful he is doing as well as he is. However, everything around Colby had been a bit of a mess over the last month, but is now getting better. I know this will shock you, but we've had some nursing issues. Can you believe it?! (Insert long sigh and eye roll.) We've been short 56 home nursing hours/week for 3 weeks. Now listen, I'm NOT complaining. I love taking care of sweet boy all by myself. And he might not admit it, but I think Colby prefers it, too. I'm simply stating the facts here. And it has been rather bad timing with as much stuff as we've had going on at the house recently. Yes, I'll be blogging about the house in another blog very soon. Our one full-time nurse went on paternity leave. Now he wants to move his schedule around, working longer shifts and being here fewer days. Ok, we can accommodate that I think. Another home nurse who worked 4 nights/week went down to 2 nights/week. And I went to school with Colby and another new nurse through the school system's agency for several days to get her trained to ride the bus and attend school with Colby. She is very good, and I think she'll do just fine with Colby and the school gig. She reminds me of the awesome nurse Alli we had a couple years ago. I'm just thankful nursing is getting back to normal. For how long, who knows, but it's looking pretty good right now.

Then there is the never-ending bullshit problems with ordering Colby's respiratory supplies. We are in the process of transitioning to another DME company. It's not as easy as you might think. You can't just pick up the phone, call and say hey, we'd like you to get all Colby's equipment and supplies now. It takes time. I had to sign release forms. Then the new company, James Medical, has to get orders, i.e. settings and pressures from the doctors. They also have to get the template form from Cincinnati ENT to order Colby's custom trachs. All kinds of stuff like that. They ordered an IPV machine for Colby, and lo and behold, it was the wrong one. SMH. They ordered the big honkin' green monster machine instead of the smaller, more portable IPV-HC model. We're slowly but surely getting there though. So far they've been a wonderful company to work with. Just hoping that trend continues.

Colby is out of school this week to get his Zometa infusion. He gets this medication 2x yearly to help with his low bone density. We're lucky that he tolerates the infusion well enough that we can do it at home instead of having to go to Cincy. I kept him home from school Monday so Walgreen's Infusion could come out and draw his pre-infusion labs. Tuesday the infusion nurse came out and gave kid the Zometa, along with a large saline bolus. Then it's best to keep him home for a couple of days and keep a close eye on him. There is a possibility the infusion would cause flu-like side effects. Colby has had a few episodes of high heart rate, but ibuprofen tackles it nicely. Friday starts his Fall break, so basically he's out of school all this week. He's really bummed about it, NOT.

Here is a recently pic of my sweet boy. As you can see, the last time I cut his hair we went back to a faux hawk style. He got his school pictures taken a couple weeks ago, but we decided to do more of a mature, laid-down hairdo. He looked incredibly handsome in his button down shirt. Can't wait to see the school pics proofs. 

Ok, I need to wrap this up. No nurse until 5:30 tonight. The infusion nurse will be here in 1.5 hours to draw Colby's labs. I'm still in my nightgown and haven't started Colby's morning routine yet. More blog updates soon. Be watching.

KID, HOUSE, FUNDRAISING - this is my life

COLBY:  Doing great, thank goodness. Although I must say, since turning 13 a couple of weeks ago he does seem to have a bit more P&V to his attitude. I notice more eye rolling, more disgusted-you're-such-a-dork Mom looks. He's still my sweet boy though and always will be. And that's not a typo. Colby Michael is now 13 years old! I can scarcely believe it. We didn't have a big blowout family party this year. On his actual bday we took him to see Ant Man (that's what he chose.) Week before last we took him to a play, Peter Pan. Then last week I arranged for his high school buddies to go bowling with him. I was pleasantly surprised that all 4 of them wanted to go! They are wonderful young men, very good with Colby. Every time it was Colby's turn to bowl, all 4 of them got up and helped him. It was awesome to watch for sure. Colby starts school tomorrow. Don't think he's overly thrilled about it, but that's tough crapola. We're going to try to extend his school day this year an extra 25 minutes. This will help compensate for him missing school on Tuesdays for swimming. We'll see, all we can do is try. Might be too hard on him and he might get too tired.

HOUSE:  Happy to report good forward progress on the "get us out of this stupid tiny apartment and into a beautiful new house" project! It has been a flurry of activity at the house over the last week or so. Outside work includes siding and soffits repaired, new gutters hung and most of the old ramp removed to make room for a new deck and ramp. There were only 2 of us working on the ramp demo. I don't know how much help I was, but hey I tried. We worked 3 hours and were able to get all the boards taken down and hauled in the dumpster, along with taking out 3 of the 9 posts that are set in concrete. Super hard, put your back into it, sweaty work, but well worth it. Now if we can come up with an easier way to remove those posts, we'll be in business to start work on the new deck and ramp. Inside work recently is foam insulation sprayed, fireplace installed and hopefully, fingers and toes crossed, drywall starts this week! I've also been picking out paint colors, tile colors and patterns, etc. You know, the girly fun stuff. I want the drywall started so badly I can hardly stand it. Come on fellas, let's get 'er done over there.

FUNDRAISING:  And of course we continue with our fundraising efforts to pay for this beautiful new home for Colby and me. I'm excited to be hosting a doTERRA essential oils class/fundraiser this Thursday at 7PM. This is a 1-hour class to educate you on the benefits of incorporating essential oils in your life. One hour, that's it. Show up, learn about these wonderful products, have dessert, socialize a bit. Order if you want. My BFF Christina is a doTERRA consultant and she is donating 100% of her proceeds from this class to our house fund. Very generous of her, and I appreciate it so much. If you can make it Thursday, can't wait to see you! If you can't make it but are interested in placing an order or want more information on the fantastic-ness of essential oils, let me know.

Time to take kid swimming. He didn't get to go last Tuesday because I had to work. So I know he's chomping at the bit to get in that pool. More soon. Peace out, bros.

TUESDAY'S TALK - it is Tuesday, right?!

Colby only has 8 more days until he starts back to school. What the what?! Many school systems in this area have been back for well over a week now. Those people are probably like, shut up chick, we started school in July! I feel like Colby hasn't had much of a summer. Much of it had to do with the weather. It was either pouring down rain or so humid it put his breathing in danger, so that left the walking bridge, zoo, other outdoor activites out of the equation. Plus I have worked several extra days this summer. Gotta make that money, money, baby needs a new pair of closet doors! I'm working Sun, Mon, Tues and Wed this week while my boss is frolicking on her Hawaiian vaca. But I'm not jealous or bitter or anything like that. While she's hiking, sunbathing and having dinner dates, there's nothing I'd rather be doing than an extremely mind-numbing, monotonous, pill-packing job in the basement of a hospital parking garage. Actually it hasn't been that bad. My boss also happens to be my BFF, and I'm really happy she gets this vacation. She has been working full time and going back to school full time to get her degree for the last couple of years now. She deserves this R&R. Once we get moved and settled into the house, I'm going to start saving for some type of vaca for Colby and me. Everyone needs a change in scenery sometimes.

I haven't talked much about the house lately because there hasn't been much going on. I understand why and that this is how construction works. But I'm still frustrated. I couldn't even get up there much to do anything. I recently fired a nurse, leaving many open shifts, leaving me unable to go up there. Colby can't be in the house right now. There are boards, HVAC stuff, other various construction materials lying around everywhere. And, there's a big ole fireplace sitting right in the middle of the living room floor. That fireplace does not fit in the fireplace hole the framer made. (insert pissed-off-looking emoji). The GOOD NEWS is that the insulation starts today. Hooray!! That's progress, wonderful, forward progress. After that of course we can move on to drywall. Then the house will really start taking shape, and I'll be able to chill out a bit. Kitchen cabinets and counter tops were ordered last week. We're going this week to pick out bathroom vanities. Time to get the ball rolling and get this house done so we can move ASAP.

And geez, I can't imagine why I would want to move. A few weeks ago I turned on the ceiling fan/light above the kitchen table and smoke started rolling out. Literally, it started smoking. Maintenance came and fixed that. Yesterday and today we have no hot water. Cold water, yes, hot water, none. According to the memo they sent out, there was a “boiler emergency” and they have to wait for parts. Should be fixed sometime today. Soooo, how am I supposed to get ready for work? Guess I can heat up some water and wash up in the bathroom sink. Who am I, Laura Ingalls? Where am I, Walnut Grove, Minnesota? Geez. But the best, the absolute best, was when our AC went out last month. I called them on a Tuesday. Took them 3 attempts and 6 days to get it fixed. They brought over some old, stinky window unit for us to use that weekend. It had no knobs so you had to use a pair of pliers to use the knobs. Don't get me wrong, I was thankful to have it. But it was freezing cold in Colby's room and stuffy and warm in the rest of the apartment. Yeah, I'm really going to miss this place when we move. NOT!!!!

Don't forget about our fundraisers! Basically we're doing new construction on the house and man, ain't nothing cheap! If you are interested in essential oils and how they can improve your overall health, I encourage you to contact me about the doTERRA essential oil class/fundraiser I'm having next week. My friend Christina is a doTERRA consultant and is donating 100% of the proceeds from this fundraiser to our house fund. 100%! So if you use oils and are running low, we can set you up with a reorder. If you're wondering about what all the buzz is about with the recent essential oil craze, come to this class. I love my doTERRA oils, and you will, too.

We're also having a yard sale in late September/early October. Start saving your junk, I mean treasures for us. We'll come pick up your stuff! Taking donations now! We're pricing items as they come in so we won't be so rushed and crazy right before the yard sale.

Day nurse isn't getting here until 1:00 today, so I need to start getting Colby up for the day. Happy Tuesday everyone. Learn from yesterday, live for today, hope for tomorrow.

DOING BETTER - I GOT THIS – I THINK

Yes, I've been a little down lately. Down, but NOT defeated. So how has this week been you ask? Pretty darn busy. That's how I usually say all our weeks are, but it's oh so true. Monday I worked. Tuesday we took Colby swimming. Tuesdays are bath night, too. Wednesday we took Colby to the matinee at Derby Dinner Playhouse to see Peter Pan as part of his birthday present. Neither of us had ever been. It was good, I think Colby liked the play. But man, that is a long day. We ate lunch, then there were 2 intermissions during the play. We didn't get home until 4:00. Thursday was a more laid back day, housework for me. Friday the nurse and I took Colby for a “real” hair cut at Great Clips. I mean come on, he's a teenager now and needs something better than the hack job I've been doing on his head for the last couple of years. Not much going on today. We have a new nurse here now. She's doing pretty good, but so help me, if she calls my son Cody one more time, there just might be some throat punching go down.

August is SMA Awareness Month. So, for the next 31 days I'll be sharing various crappy facts and lots of information on SMA. My family and close circle of friends have been familiarized with this sucky disorder to some extent for quite some time now. Know me, know SMA. But maybe I can teach somebody something new. Any information I share may convince someone to donate to research, which hopefully soon will lead to an effective treatment or even better, a CURE. Look at the green fact below - 1 out of 40 people carry the recessive gene that causes SMA. Think about that the next time you're at a ballgame, or church, or the movies, or anywhere there is a crowd of people. Start counting heads, and count to 40. In that group, 1 of those people has the SMA gene. Count another 40 people, again, 1 person in that group is an SMA carrier. And so on and so forth. YOU could be a carrier and not know it. I certainly didn't know I was. Colby's dad didn't know he was. He has 3 other perfectly healthy children older than Colby. Not trying to scare you - just something to think about. More fascinating SMA facts to come. 

UPCOMING FUNDRAISERS

doTERRA Essential Oils ClassTHURSDAY, AUGUST 13TH
My apartment - 7PM
This is a 1-hour class to educate you on the benefits essential oils can bring to your life. Essential oils are becoming more and more popular and have many different uses. Whether you're new to essential oils and want to learn, or you've used essential oils and want to expand your collection, this class is for you. I've been using essential oils on Colby and myself for several months now and can attest to their effectiveness and quality. My friend Christina is a doTERRA wellness advocate and is donating 100% of her commission to this fundraiser. We're taking orders NOW, so if you want more information, let me know. 



YARD SALE, DATE PENDING, EITHER SEPTEMBER 19, SEPTEMBER 26 OR OCTOBER 3

We hope this will be a big money-making event, as this will be one of the last fundraisers we have before moving into our house! We are collecting items NOW. We need HELP to make certain this event is successful. Do you have some treasures you would like to donate to the cause? There is always a buyer for anything you want to get rid of, in other words, we'll take it! We're pricing and storing items from now until the yard sale. Let me know if have anything to donate. Also, we need volunteers to go get items people are donating and of course need workers the night before and day of the yard sale. More details to come.

CONFESSIONS OF A STRESSED OUT SINGLE MAMA

I saw this on Facebook and it spoke to me. I have this Origami Owl charm that says "find joy in the journey." I try very hard to live my life this way. I believe life is short, and there are no rewinds. I think we should all find and grab happiness when and where we can. My mom has influenced me with her "at least" mentality.  Anytime I start whining about a situation, she'll at least me. Now Amy, at least...and she'll start telling me how much worse it can be. And usually I agree with her. It could be worse, much worse. And as they say, this too shall pass. But then again...

Sometimes life is hard. Really, really hard. Or maybe it just seems that way, and I'm not thinking clearly. I don't know. But I think it's okay to say I'm tired. Physically and emotionally drained, to be exact. Trying to find joy in my current journey. Some days it's there, and some days it's not. And that's alright, right?

So I'm going to say something I very seldom say or even let myself think. Raising a kid is tough sometimes. Raising a kid by myself can get really tough sometimes. Raising a special needs kid by myself gets really, really freakin' tough sometimes. There, I said it. It doesn't mean I don't love my sweet boy with all my heart. I treasure every moment with him and have never regretted being by Colby's side to help him fight this ugly, horrible, unfair disorder called SMA. However, SMA is all consuming and ever changing. It brings a lot of unknowns and stress into our lives. Some days I don't think I can take much more. I watch Colby's muscles get weaker as time goes on. I hear of another beautiful SMA child passing away and it's like a stab in the heart. So I just do what I know to do, keep moving forward. Keep pressing on. Keep trying. Keep hoping. That's what Colby does. He's the most laid back, amazing person I've ever known, even though he's the one with the illness. He's the one who needs help with every aspect of his life. Helping him along and pushing myself to do better for him is the least I can do.

The house has me a little freaked out lately, too. I know getting this house will be life-changing for Colby and me. I know it's one of the best opportunities that will ever be given to me. Ever. I know that I've had a tremendous amount of help and generosity to get this house done. I know much of the work being done at the house is on a donation basis, so it will take longer to get done. I know the people who helped me buy the house have been a tremendous help to me through this renovation process. I knew nothing about this sort of stuff when we got the house 7 months ago. I've learned so much and if they hadn't been there to help guide me, I'd be completely lost. I know this house will be beautiful and so much better than this stinking, tiny, cluttered, dumpy apartment. I know all these things, yet I still get wigged out about it. Again, I want to find joy in this journey. I need to calm my brain down. I'm worried we won't get in the house before our lease is up October 31. I have so many decisions to make for the house in the near future. I'm ready, so ready, yet worried I'll make the wrong decisions about something.

See, I'm a mess. How can you love and be so excited about something (Colby and house), yet be so totally freaked out and worried about both of them?! Good grief, I need to slow this brain down before I snap. Easier said than done, but I'll figure it out. I hope. And soon.