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.

UPDATE - FINALLY, RIGHT?!

Good morning blog readers! Yes, it's been forever since I've done an update. I thought my life was crazy busy before, then I got a fixer-upper house and holy crap, busy doesn't begin to explain it. So let's jump right into it for a quick update before I head into work today.

Hard to believe it has been over a year since Colby had his spinal fusion surgery. June 25 was the 1-year mark. What a difference one little year can make! Not only is Colby seriously kicking SMA's butt, he continues to thrive and beat the odds every single day. AND, we'll soon move into our beautiful, handicap accessible home. Wow, amazing. We recently had various follow-up appts at Cincinnati Children's. On the 19^th we did an “up and back” to meet with the ortho surgeon and ENT. Colby needed x-rays, sitting up, with no back/support on the stool (insert wide-eyed, scared-looking emojicon). But the nurse and I managed. Ortho surgeon said Colby's spine and back looked wonderful and he'll see us in 6 months. Next appt was ENT. The doc said Colby's trach site looked “impeccable.” I'll give credit for that to a little luck and a lot of diligence and care on our part (nurses and myself.) I am meticulous about trach care, and that seems to be paying off in Colby's care.

Last Wednesday and Thursday were exhausting, no other way to put it. Colby is such a trooper, he never cried or whined one time while we were gone to Cincy. Such an easy-going, sweet boy! And super funny and handsome to boot. So proud to be his mama! We went up on the 24^th for some testing – PT evaluation, pulmonary to test his vent settings and function, then an Echo and EKG. Drove to the hotel, unpacked everything out of the van. Got rested up, loaded up everything back into the van the next morning and headed back to the hospital for follow-up appts with Neurology, Pulmonary and Cardiology. Let me tell you something, Cincinnati Children's has it going on! They put us in a room and then all the docs come to us. Wonderful! So much easier than transferring Colby in and out of his wheelchair who knows how many times and traveling all over that germy hospital. Again, all good reports for Mr. Colby. The only thing is he has lost a little weight. I was very surprised to hear this. So we've adjusted his diet and we'll see how the new formula recipe works. Other than that, the doctors had excellent things to say about Colby's health and care. That made me feel good. We have an up and back in July also, but after that we're clear from Cincy appts until October. Shew, grateful to get all that craziness done.

The house is coming along. Slowly but surely, little by little, we're getting there. The replacement windows were installed last week, and they look fantastic. Next outside work will be gutter replacement and soffit repair. As far as donations go, it's been a one step forward, one step back; two steps forward, one step back; one step forward, two steps back kind of thing. I am extremely grateful to the companies and individuals that have donated labor and materials or given us a discount. There is no way I could ever afford to have all this work done to the house without such amazing generosity. So the latest wonderful news is the materials and labor for a deck and ramp have been 100% donated. They can't start on it until late August or early September, but that's fine. The latest not-so-wonderful news is there was a problem or miscommunication with the kitchen cabinets. We were told by the contractor early on that a company was donating them. Now the company is back pedaling and saying they never said that. Well, isn't that special?! So we've been scrambling around asking other companies for donations or discounts for the cabinets because that's a huge expense! For crap's sake, they are just large boxes that mount to the wall to hold dishes and food, WHY are cabinets so expensive, in my opinion. The other bad news, really bad news, is that we did NOT receive our grant for the overhead track system in Colby's room. This is a major bummer and a huge blow to our budget. The quote for the track system and installation is $14,000 (insert crying, hysterical emojicon.) I have no idea how we're going to offset this expense. Again, we're contacting other businesses and other organizations that might donate money or labor in the hopes that we can get some assistance with this much-needed item for Colby's room.

With this being said, please, please continue to share our gofundme page. To everyone who has donated and shared so far, thank you so very much. We have reached our 10% goal and I'm very pleased with that. We're planning other fundraisers, too, but I just haven't had much time to work on them or post/blog about them. Here is the link if you are interested in donating to help us move out of this tiny apartment and into our beautiful, handicap accessible home: http://www.gofundme.com/amyandcolby

I have to get going now. Nurse will be here in 15 minutes and I still need to do hair and makeup and make a grocery list before heading to work. More updates soon! Adios for now, amigos.

STARTING SUMMER VACA OUT RIGHT

School's out! School's out! I'm so happy I just might shout! Not sure who is more excited about the school year being over, Colby or me. His last day was yesterday. He had a good school year. I wouldn't call it great, just good. The last couple of weeks, Colby had been crying/whining at school. At first, of course, we were all concerned. There was no particular pattern – he would cry during different activities, different times of the day, etc. It was obvious he was not in any real respiratory distress. By the last week of school we were like, knock it off kid. I told Colby, look, if you are truly having respiratory issues, I'll come pick you up from school in a heartbeat. If not, then straighten up. Such a mean mama!

Some of it might have been Colby has been fighting off a double ear infection. Yeah, that might make you a little grumpy, huh? First he did a round of Augmentin. And just like I told the pediatrician, it wasn't enough. Took him back to the doctor 2 weeks later, and Colby had some nasty, thick, yellow/green gunk coming out his trach. Uuuuuugh! Then Colby started Omnicef and Ciprodex drops in his trach. That has worked I do believe. Turns his poop a lovely brick red color, too. Wait a second, I believe that's TMI?!

I've been talking to Colby about what we're going to be doing over the summer. I want to find a nice balance between going places, doing things and just chilling, resting. I think both are very important. We've found a new massage therapist. Colby hasn't had massage since December, so he'll have that once or twice a month. During the school year we were having trouble getting speech therapy here at home scheduled. So hopefully Colby will have speech weekly now. He and his speech therapist are tight, they have a very special relationship. And there's swimming of course. Looks like Peter Pan at Derby Dinner with friends is now in the works. I'm also thinking a visit or two to the zoo and the walking bridge are in order. A lot will depend on the weather because we don't do hazy, hot and humid. And of course we have follow-up appts at Cincinnati Children's – 3 days this month and 1 day next month I believe.

Colby has had an excellent first day of summer vacation. Today Colby had pet therapy. Here's a pic of Colby “walking” Luna with her owner, Ann. They visit us every other Saturday, and Colby loves it. We also went to a Louisville Bats game. Super fun! Friends invited us to a suite to watch the game, and let me tell you, it was sweet! I thought Colby might last an inning or two, then he'd get tired or whiny and we'd go home. Uh, no, he loved it! I was pleasantly surprised, and he seemed to be having a great time. The game started at 6:05, and at 8:15 I was saying, Colby, we have to go, you need your treatment at 9:00. I swear he didn't want to leave. The friends who invited us arranged for Buddy the Bat to come into the suite and see Colby. It was awesome. See pics for evidence.

There has been much progress made on our house over the last couple of weeks! The framing is more than half done, probably closer to 80-90% done. Looks like the plumbing is done unless there's something little, but for the most part, done. The electricians start next week. I'm starting to think about finishes. Went to look at flooring. Very soon we will need to go look at cabinets and counter tops. There was something going on with the house every day this week. I was either meeting with the contractor, meeting with someone to look at work and give me quotes, going to look at/pick out stuff, etc. Loving every second of it! Hopefully now that school is over, I'll be able to give more time to all things house related. Can't happen soon enough!! Come on house, get done!!

We've been fortunate to have many materials and labor donated to our house project. We have an excellent contractor on our side. Don Langan and his son, Clayton, of Karzen Langan Construction, have been involved with our house since we bought it. They are overseeing the renovations. I provided Don with a letter explaining our circumstances and pics of Colby and me. He took the information and contacted a lot of his subcontractors. Turns out there are many generous, caring businesses here in Louisville who wanted to help us get into a house. We are forever grateful for all the items and services that have been donated. HOWEVER, we still have a loooooong way to go. The best we estimate, we still need about $50,000 worth of materials and labor to complete renovation. That's a lot of freakin' money! So along with fixing up the house comes fundraising for the house. But I'm on it! Recently I published a gofundme page on the web. In July we hope to have a fundraiser at a local restaurant. And in August we're going to have a mega big, super awesome yard sale. I'll forward all the details for these wonderful events as they get scheduled. If you are interested in contributing to our “get us out of this tiny apartment and into a beautiful house” fund, you can check out our gofundme page here: http://www.gofundme.com/amyandcolby. Any donation is greatly appreciated, please know that. You're helping us get one step closer to completing our house and getting us out of this apartment!

Okay, my little baseball fan is tucked in, and I'm not far behind. Not sure what we're doing tomorrow, resting probably. It'll be hard to top today, that's for sure. Bye for now. 

 

Colby taking Luna for a walk.

My sweet boy was looking fresh for the last day of school. 

Colby with Buddy Bat at the game tonight.