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.

YOU KNOW WHAT THIS IS ABOUT - COLBY AND HOUSE

Let me take a moment to brag, Colby has done very well at school the last couple of days. Meaning he hasn't cried. You know how factories have those signs, we've gone 50 days in a row without an accident? Well, we started that for Colby and his crying at school. One week we were able to say, Colby has gone 3 days in a row without crying/whining. If he makes it through the day without whining and crying, then the day has been a success! Today he also drove his power chair forward quite a distance in gym class. As many of you know, Colby has a propensity for driving his chair in circles. Lots and lots of circles, continuous circles. So it was nice to hear he actually drove forward today. Tomorrow, however, could be a whole different story. And he could whine and cry for no apparent reason, drive in circles and/or not drive at all. Never know with that boy.

We hooked up Colby's Supersoaker gun so he could use it. First you have to tape down the trigger to the on position. Gotta love duck tape! Then put a battery interrupter on the negative end of one of the batteries. Then make sure the batteries stay put in the battery compartment. More duck tape, please. Then hook Colby's switch into the battery interrupter. Then he's ready to shoot! We hid him around the corner in the hall when his high school buddies came over on Monday. He soaked both of them! Yeah! Then his other high school buddies were over today. So we hooked up the Supersoaker again and went outside. One of the boys drove Colby around in his chair, and Colby was having a ball shooting all of us. That Supersoaker has some range, I'm telling you!

How's the house coming along? What's new with the house? What else have you gotten done at the house? I hear these questions quite often. The answers are, in order, slowly, not much, and very little. We do have beautiful new steps. Can you see how much better the pitch is on the before and after pics? They are also wider, so now my life won't be in danger when I go upstairs and come back down. Redid the steps going down to the basement, too, as they were a little shaky. Literally. The roof was supposed to go on 2 Saturdays ago, but it rained. That is rescheduled for this Saturday. Praying to Mother Nature, please no rain this Saturday. Then they will leave the dumpster at the house for a few days so we can load up the boards and concrete removed when doing the steps. So that's something, yes? We do have a final floor plan. That's something, too, right? There may be a couple little tweaks here and there, but for the most part, it's done. And absolutely beautiful, I might add. It took several meetings and discussions to get it where we need it so there is enough room for Colby to get through the house easily in his wheelchair. Dear Lord baby Jesus, lyin' there in your ghost manger, I hope we've done it correctly! Never completely redone a house before, and certainly never tried to make a house handicapped accessible before! Now we're getting bids for a ramp and deck. Also we have dug up some nasty, ugly bushes and planted a tulip poplar in the front yard. Sweet! So I can't say we haven't been doing anything at/with the house, it's just kinda slow-go right now.

Oh, and fundraising. Need to get working on that, too. We've had some materials and labor for the house donated, but are in need of many more items. Like I said, Colby and house. House and Colby. That's pretty much how I roll these days. Okay, wrapping this up for now. Peace and love, everyone.

 BEFORE: Very steep, dangerous steps. 

AFTER: Beautiful, perfectly pitched steps. 

Nurse and I took Colby to the Pegasus Parade. It was windy and brisk, but we hung in there. 

It was a beautiful night to plant our tulip poplar. May Day 2015.

HERE IT IS - A MUCH NEEDED UPDATE

What's the easiest way to update you on what we've been up to? I have no idea. I'll just start typing and if this blog seems choppy or all over the place, sorry. That's fitting, since that's how my brain usually works anyway.

Today Colby had a visit from pet therapy, a sweet little doggie named Luna. Oh, to watch Colby with animals is such a joy. I know pets - besides hermit crabs and fish - take time, money and patience that honestly I probably don't have. But there's no way I'm not getting my sweet boy a pet when we move. I've seen other SMA kiddos that have pets, and there's such a bond and companionship. Cat or dog, don't know yet. Colby seems to love both. We'll have a fenced yard at the house, so a dog is a possibility. But of course cats are less maintenance. Guess I'll let Colby decide when we move.

And when will we be moving? Don't know, stop asking. Our apartment lease isn't up until October 31, so technically we have 6 months to get the renovations done. However, I'm Jonesing to GET OUT of this apartment. I'm keeping my fingers crossed we can bust out of here sometime over the summer. Would love to be moved before Colby starts school in August. Only time will tell. Windows have been delivered. Not installed, but delivered. The carpenter is finishing up the stairs, both going upstairs and going down to the basement. The new roof was supposed to be put on today, but do to the shitty rain, it has been rescheduled for May 9. We've had several meetings with an interior designer and the contractor, figuring out the best configuration for Colby's suite, closets, having consistent flow in the house to get Colby's wheelchair through easily, etc. The interior designer is amazing! He has listened to what we need, thrown in a couple of his own ideas, and has developed a beautiful floor plan for the house. We'll meet with the contractor one more time (hopefully) to make sure the recent floor plan changes are a go. Then maybe we can get down to some serious work.

Colby has been crying at school. Why? I'm not sure, but I don't think anything is really wrong. My guess is he's bored or just doesn't want to do anything related to schoolwork. He cries at different times of the day, in different classes, doing different activities. So yeah, I think he's “going through a phase” as they say. A pre-teen, I don't want to do what you want me to do phase. Get over it, kid. You're going to school. End of discussion. I told him the boy who cried wolf story. I told him, what happens one day when something really is wrong. You're uncomfortable or have a headache, etc. Then if you start crying nobody will believe you. He wasn't impressed with my story. And then of course I encouraged him to TELL US on his eye gaze why he was crying at school. He wasn't impressed with that idea either. Somebody pass the vodka, please.

Colby and house. House and Colby. That's my life right now, and I love it! I did buy a push mower a couple weeks ago. That was exciting. My dad mowed the front grass at the house, then a few days later I tackled the back. I haven't mowed grass in a decade or so, but I managed. Next purchase, weed eater. And a gas can. I have absolutely no yard work related items. Left them behind when Colby and I moved out. What the heck would I do with that stuff in an apartment? Time to start over and get back in the outside work groove.

Here are some recent pics:

We have windows!

Last Saturday was perfect weather, so we hit the zoo. Thank goodness somebody gave us passes. When did the zoo become so dang expensive?

Colby and sweet Luna during pet therapy. She's a camera ham, Colby not so much.

EASTER AND SPRING BREAK AND PICS AND STUFF

We had a fabulous Easter weekend. Colby's dad and stepmom came over Saturday morning to color eggs with him. We headed out to Grandma and Grandpa Kenny's at 2:30ish. Started unpacking the van and getting us settled for the weekend. Hadn't been there 15 minutes and I realized I forgot something. I could have crapped my britches. I NEVER forget Colby's important stuff. Never. That's why I have a list for the love of corn! I remembered to bring the humidifier for Colby's vent, yet somehow it didn't have a water chamber attached to it, meaning it was completely useless the way it was. Uuuugh. Poor Mom and Kenny had to drive over to the apartment and get the chamber, and I stayed at their house with Colby. I'm still kicking myself in the pants. After that fiasco was over, we made a bunny cake and hung out the rest of the night. Their house is not exactly accessibility friendly (steps to get inside, sunken living room, narrow hallways) but we managed. Barely, but we managed. I think all of us need IcyHot patches, massages and muscle relaxers after moving Colby's big butt around for two days.

Sunday morning we were up, ready and at Easter church service 10 miles from Mom and Kenny's at 10:30! We rock! Even got there a few minutes early. My stepbrother and his family were there, too. Church was “crowded” this year, 22 of us. That's a huge attendance for their church. Of course 8 people were our family, but that's beside the point. After church was Easter lunch. Ham, potato salad, side dishes, bunny cake. Colby got to spend some time with his cousins. Grandpa started teaching us to play Rummikub. Colby thought better of it and was napping within 10 minutes of us starting to play. He was zonked. Heart rate was in the low 60's and he had one eye half open. A sure sign he was sleeping peacefully. Okay then, we'll just continue playing Rummikub without you, sleepy boy. After lunch was egg hunting time. My sister-in-law had tons of plastic eggs filled with candy. Good stuff – Jolly Ranchers, Laffy Taffy, Twix, Rolos. She hid them all around the yard for the girls, and for Colby she hid them up and down the driveway so he could drive to them in his chair. Well, that was our theory anyways. He wouldn't do it. Simply would NOT do it. He would drive his chair forward a few inches, stop. Turn right for a bit. Stop. Go backwards for a few inches. Stop. You get the idea. No matter who encouraged him or what we said, Colby would not drive towards those Easter eggs. Seriously, if Laffy Taffy doesn't get you motivated to do something, nothing will. So his cousins collected his eggs for him. Pitiful, Colby, just pitiful.

Spent the night again Sunday, and came home Monday around 2:30. Mom followed us over and helped me get Colby out of his chair and unpacked. The packing and unpacking for Colby is a pretty big job. Okay, actually it's a huge job, and I really appreciate my mom helping me get settled once we got back here. My boss at work had called out sick. Apparently there is a nasty virus going around the pharmacy, and one other coworker has tested for flu. The flu?! In April?! Good grief. So when the night nurse got here to stay with Colby, I went in and worked for a while. Wasn't too thrilled with it, but I'll be glad next week when I get my paycheck. Colby is on spring break this week. I had envisioned all these fun things we were going to do here at home. Clean out his toy box. Use adaptable switches and get them all working for him. Use eye gaze for fun stuff like playing games on the internet. Want to load some pics and videos on eye gaze so Colby can show his friends. Well, haven't gotten to any of that quite yet. And I'm working today so it's doubtful much extra will get done. All work and no play...

We did take Colby swimming yesterday, which of course he loves. That was fun and enjoyable for him. Gave him a bath last night. I went up to the house and took some pictures in the basement. We have some water leaking in during heavy rains. I'm thinking once we get the gutters fixed and cleaned out, that will help with the water situation considerably. But we also want to go ahead and somehow waterproof the basement. My friend took the pics and is going to talk to a waterproofing company to maybe get it donated or at a discounted price. It never hurts to ask!

The nurse will be here in 10-15 minutes, and I need to finish getting ready for work. Here are some recent pics. Sure do love my new camera. I've become quite the shutterbug. More soon, peeps. 

Colby's ear looking great:

Colby's ear looking shitty 3 days after above pic was taken. So frustrating:

I really don't think he could get any more handsome. Easter Sunday 2015.

Bunny cake, after we made it and I did surgery on it. First attempt looked a little creepy. 

Grandpa teaching us to play Rummikub:

Beautiful tulips at our beautiful house. I want to move so very badly! Can't happen soon enough!

NORMAL STUFF AROUND HERE

Looks as if I've been a little lacking in the blogging department. Guess I'll remedy that now. Get ready for an earth-shattering blog update.

Just kidding. Not much around here to report really. Colby is doing his thing - school 4 days a week, swimming once a week and visits with his high school friends 2 days a week. Little stinker stays pretty busy. I was looking at my calendar for the rest of the year and realized there were no upcoming appointments for Colby at Cincinnati Children's. I knew that couldn't be right! So I called the Concierge Department there and they helped me schedule follow-up appointments. Scheduled 8 appointments as a matter of fact: orthopaedics, ENT, pulmonary, cardiology, neurology, wound care, endocrinology and ophthalmology. These are spread out in June, July and October. Just thankful we aren't scheduling pre-op and surgery dates. This time last year we were starting to prepare for Colby's spinal fusion surgery. So very thankful we have no Colby surgery to deal with, prepare for and schedule. Totally nerve wracking.

I've been watching a lot of basketball lately. A LOT of basketball. I do love the madness of March. Tried to get Colby to watch some games with me. Yeah, that went over like a lead balloon. He did, however, watch the last 20 minutes of Hoosiers with me the other day. I'll take it. Close enough to watching basketball with Mama.

Proud Mama moment – my friend Jimmy came over for supper the other night. Colby was sitting up in his wheelchair and his eye gaze was hooked up. I told Colby he needed to tell Jimmy hi, and he did! Not only that, after he said hi he said, “My name is Colby” and then hit the button to say, “this is my talker. I use it to communicate by using my eyes.” It was priceless. Colby was actually using his eye gaze to say something appropriate. I'm still smiling about it. Then yesterday my dad came over and Colby said on eye gaze, “Let's play Uno.” So of course Grandpa agreed to play. And Grandpa showed no mercy. Beat Colby 2 out of 3 games. Bet you it might be a while before Colby asks Grandpa to play Uno again!

I won't bore you with the details, but last week was very difficult trying to get Colby's supplies ordered and other various phone calls. To the point I was in tears by the end of the day on Wednesday. Usually I refuse to let these assholes get to me, but I had just had enough. Enough with the errors. Enough with the delays. Enough with somebody else needing something else from me. Thank God nursing is going okay right now or seriously, I don't think I could handle it. Something has to give. It has to get better/easier, something. And soon.

Not much going on with the house. The contractor was out of town last week. This week supposed to meet with an interior designer to see his ideas for a floor plan. I, and several others, worked our fannies off on a grant application. Applied for a grant to help with handicap accessible home modifications, specifically to reinforce the ceiling, purchase and install an overhead motorized lift system for Colby to be transferred from his bed to his wheelchair or shower chair easily. It's due April 1^st but I delivered that sucker last Friday. I was so glad to get it done and out of here. We won't hear anything until mid-June. That will drive me crazy cuckoo, but not much I can do about it I suppose. Praying to the grant gods we get this grant. A ceiling lift system would make all of our lives easier and would make transferring Colby much safer.

Okay, I guess that's it. My eyeballs are sticking together from my dry contacts and I keep making typos. Time to watch the rest of Castle and go to bed. More soon. Promise it won't be so long until my next blog.