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.

HOUSE INFO - PART 1

I'm sure there are people who are curious about Colby and me getting a house. Some people are wondering out of care, concern and happiness for us. For those people I'm grateful. And then some people are just too stinking nosy for their own good. And that's fine, it's to be expected I suppose. I'm okay with both. So I want to share the story on how our house came to be.

It's no secret I've been trying to get a house for years. I have wanted a house so badly for Colby and me. Apartment life is not for us, for many reasons. I tried on my own to buy a house several years ago. It fell through during the home inspection process. I cried for days. Literally I cried and cried and cried. I was devastated and felt defeated. I couldn't see it at the time, but God had another plan for us. A much better plan for Colby and me to have a beautiful, handicapped accessible home. Fast forward to 2015.

It's also no secret that I'm, shall we say, financially limited. I'm a single mom raising a special needs child and am only able to work a very part time job for crap's sake. Do the math. If it wasn't for fundraisers over the years, I don't know how Colby and I would survive financially. It's not easy to admit that, but it's the cold hard truth. A couple of years ago I decided come heck or high water, we were getting a house. I didn't know how. I didn't know when, but I had that little voice telling me to keep at it. With the help of many caring, helpful, loving family and friends, I've had several fundraisers the last couple of years to start a “house fund” for Colby and me. I was trying to come up with enough money for a down payment, closing costs, repairs and/or handicap modifications to the house, and also enough money to pay for the mortgage on the house while working on it and still living in the apartment. That's a heck of a lot of money, but I figured slowly but surely, we'd get there somehow. Oh, and then there's finding the right house of course. The right floor plan, the right price, the right location. I had my work cut out for me. The work, stress and worry of it all was overwhelming, but my desire to have a home for us far exceeded all of that, so I just kept plugging away. I fit in holding fundraisers, storing money back in our house fund and looking for a possible house while raising Colby, running the apartment and working part time. Yes, I stay busy.

Then the most amazing thing happened. The most unreal, surprising, wonderful, caring, truly amazing event happened in our lives. Colby was in the hospital at Cincinnati Children's back in October getting over pneumonia and a collapsed lung. I got a text from a friend saying she and her husband wanted to help us get a house. I thought oh how wonderful, they want to give a donation to our house fund. Uh no, they had something else in mind. This thoughtful, incredibly kind couple offered to buy a house for us. Ummmmm hello, was I reading these texts correctly? Was my lack of sleep from being in the hospital with Colby affecting my ability to read and process words?! The more she text, the more I understood what they wanted to do. I couldn't believe it. I still can't believe it. We've been working on the house since January and I still can't believe it's really going to be for Colby and me. Amazing how your life can change for the worse, or in this case for the better, just like that, isn't it?

Here's how it's going to work. I knew I wanted to get a fixer upper. No sense in getting a remodeled house with nice new bathrooms or carpet when the first thing we would do is rip all of it out in order to make handicap modifications for Colby. I knew the area I wanted to live. And I swear, like a gift wrapped up with a pretty red bow from God, the perfect house came along in December. As soon as I saw the floor plan, I knew it would work for Colby. I loved the location. I could see it. As I walked through the house, I could literally picture Colby and me living there. If you've ever spent a lot of time house hunting, you know the feeling. The feeling of YES, this is absolutely the house we were meant to be in. We looked at it on a Saturday and made an offer two days later. By Wednesday the next week we had an accepted offer. From that moment on, our lives changed for the better. I cannot wait to call this place home.

The house needs a lot of work. I mean like seriously, A LOT of work. Complete overhaul. We are trying to do some work ourselves, like the demolition phase, to save money. We are reaching out to companies for donations of materials and/or labor. We're filling out grants and looking for organizations that will help pay for the handicap modifications for sweet boy Colby. When it's all said and done and we move, I will buy the house from my friends. No, I will not be paying rent. I will own the house. Basically they will be my bank, like buying a house on contact. The purchase price will include what they paid for the house and any money we spend for repairs and modifications. It will all be done legal-like with a real estate lawyer. When the time comes, we'll decide on the length of the loan based on what I can afford to pay, something comparable to what I pay now in rent. Pretty sweet deal, huh?

So that's why we're asking for donations and volunteers to help with the house, to keep my eventual payment down at an affordable amount for me. We're going to be having some fundraisers in the near future, and I'll also be posting a gofundme page as a way of fundraising also. If you've ever donated a dime to us, or even if you've sent loving prayers and thoughts or way that we would someday get out of this apartment and into a house, THANK YOU. The couple helping me has asked to remain anonymous, and I will certainly do that. I've tried to thank them with thank you cards, telling them in person how much this means to me, etc. But I feel I always fall short. How in the world could I ever thank them enough for stepping up and helping us like this? This house project proves that there are still sweet, caring, generous, amazingly thoughtful, helpful people in this world. Colby and I are damn lucky to have many of these people in our lives. I feel so blessed that all this is actually happening. Truly, a dream come true.

Ok, I know this blog is really long, but I wanted to share how all this house stuff came along for us. We don't have a nurse this morning, per my request. I need to some time just kid and me. It's time to start getting him up, so I'll wrap up for now. More fantastic house news and updates are coming soon. Be watching!

GOOD STUFF

It's not all gloom and doom around here. I know there are many people going through many worse things than an ear infection or incorrect credit card charges. I've had a lot of people show their support the last couple of days. It means a lot to me to know people really do care about our well being. There are many wonderful things happening in our lives, and I'm more than happy to share/blog about those, too. So here's a much better update than Monday's.

Colby's ear infection is better, but he's not completely over this illness yet. We pulled one heck of a nasty green booger out when doing his trach change tonight. TMI? He's half done with his antibiotics. Guessing maybe he's having sinus drainage along with the ear infection? He's been fever free since Friday. Going to try and send him to school tomorrow. He only has 9 days left in the school year. I hate that he has missed. We'll see what happens. If he does lousy, he can stay home again on Friday.

The credit card fiasco has gotten a little better. The credit card company has done their part. They took the Apria charges off and my balance is back to normal. Now comes the ridiculous, time consuming, frustrating battle with Apria's billing department. No way are they getting away with this. They have had my credit card number of file for years. And suddenly someone gets a wild hair up their ass and authorizes $10,000 worth of charges to that credit card bill. Nu-uh. No way, Jose. I asked them to send me a detailed statement of all charges, and I'll start there. I will argue every dime they have charged Colby's account, if necessary. If we owe them some money, then fine. Couldn't be over a couple hundred dollars, if any. It's Apria's fault. They aren't billing correctly. Freakin' morons.

I had a girls' day out to Churchill Downs this past Saturday. I felt a little weird leaving Colby. But he had started his antibiotic the day before. And I figured he wasn't much in the mood to sit up or do anything anyways. I think he was perfectly content on hanging out in bed watching his SBSP. I arranged for 8 of us wild and crazy gals to go to the track weeks ago. I didn't want to back out at the last minute. I told the nurse, repeatedly, if Colby needs me for any reason, call me, I can be home in 15 minutes. Colby was fine. My girlie friends and I had so much fun! It was one of those days where your face ends up hurting because you've laughed so much. I have the best, most fun group of friends. So glad I decided to go. Hoping we can all get together and do it again next year!

Now I have the most wonderful news to share. I got an e-mail from the contractor yesterday. They are going to start framing our house on Friday!! OMGosh, I'm so excited and happy I can hardly stand it. This is really, really great news. The house has been down to the studs since the first of March. We've gotten several things done at the house, and now I guess it's time to really start moving forward. Seriously, I couldn't be happier. Amazing how your life can go from crappy to stupendous in a matter of 24 hours. Tomorrow before I go to work I need to get copies of the floor plans made and run them up to the house for the framers. I'm so ready for this! Bring on the framers! Let's do this!

Time for me to get to bed. Colby has school and I'm working tomorrow, so we'll both be up early. Four days down, 2 to go for working at the hospital. I can do this. Saturday will hopefully be sleep in and get caught up on rest day. Bye for now. So glad to share some good news with everyone. Who knows what the next blog update will hold?! You never know around here, that's for sure.

BAD STUFF

Okay, tonight I'm going to gripe, moan and blog about all the crap that's wrong around here. Let me do it. Just give me this moment. Then tomorrow I'll blog about all that is right, good and wonderful in our little corner of the world. But right now, I need to vent. Complain. Unwind. Frustrated to the nth degree.

Last Thursday Colby was whiny and crying at school. Well, we know that's not all that unusual lately. However, he continued to cry and fuss after getting home from school. Then his heart rate started to go up, up, up. Not good. Yep, sweet boy had a fever. Got up to 101 that night. He was miserable, which made me miserable. Colby was crying and looked so pitiful, just broke my heart. We took him to the pediatrician's office on Friday. His regular doctor wasn't in the office and we had to see someone new. Actually I was just thankful because we got an appointment and were in and out of there in 40 minutes. Double ear infection. Are you freaking kidding me?! I don't think Colby has ever had an ear infection. Started a 10-day course of Augmentin and started alternating Tylenol and Motrin. You know what comes after starting an antibiotic, yep, diarrhea. My guess is it's from the pool. Time for cotton and ear plugs. Figures. The one thing Colby truly loves and looks forward to manages to make him sick. Kept him home from school today, too. He's just not quite ready. Blah.

So last night I go to pay my credit card bill. I use my credit card, but I'm a good girl and pay it off every month. Imagine my surprise when I saw that my balance was way more than I was expecting - $10, 675.38 more to be exact. OMG the most sickening feeling came over me. I didn't know whether to laugh, cry, vomit or shit my britches. Upon a little investigation, I discovered Apria, the most inept, incompetent, stupid, worthless, pathetic loser DME company in the universe, has put 5 charges on my credit card, unbeknownst to me. I spent approximately 3 hours on the phone today with my credit card and the Apria idiots trying to get things worked out. Ridiculous. Awful. Pisses me off to no end.

And to top it all off, I have to work all week. Sure, you're probably sitting there saying well big deal, I work all week every week. Well, good for you, I don't. My full time job is taking care of Colby and all things Colby related. I'm at work today, worried about how Colby is feeling. Feeling guilty as hell that I'm away from him. Worried about my freaking credit card statement. Worried about the house and how things aren't getting done at the pace I want. Worried about having too many worries. I can only imagine how awful, tired, haggard and stressed my face looked today. Ah well who cares. Tomorrow will be better. I said it will be better so by golly, it will be. As long as some stupid crap or person doesn't come along and screw it up. I don't want to go to work. I don't want to leave Colby. He needs his mama, or actually his mama needs him. I don't want to deal with these idiots at Apria. I can't handle their stupidity anymore. DONE with those morons. What I really want to do is crawl in bed and cry myself to sleep. But honestly, I'm too tired for that. So I'll read some Harry Potter to Colby instead. End my day on a good note. I'll do what I do when times are a little rough. Suck it up, Buttercup! Deal with it. Things will get better, they always do.