EVERYTHING UPDATE

Colby: Here he is, sweet, adorable and stubborn as always. We didn't get to go swimming on Tuesday. Too much snow, ice and slush in the parking lot still. I think he was upset about it, but that's just tough cookies. I wasn't about to get out there and chip away at that mess. We finally got his power chair working so he can practice driving once it warms up and he gets back in school. It took months for a new switch mount to come in, and we've been experimenting with a couple different switches. We took him outside for a total of 12 minutes yesterday. I know because I timed it. Seven minutes the first time to let him try out the switch, then 5 minutes the second time so he could show his buddies how he drives. Of course this morning he had a bucket of snot coming out his nose. It was worth it, though. I'm sure Colby has cabin fever in the worst way, and I'm sure he wanted to show his friends how he can activate his chair by himself.

We're gearing up for Colby's zoledronic acid infusion next week. We give him extra calcium for 7 days before the infusion. He will get labs drawn on Monday and if his levels are okay, he'll get the infusion here at home on Tuesday. This will be the 2^nd time we've done the infusion at home. Praying the 2^nd goes as well as the 1^st and that Colby has no weird reaction to the medication or bad side effects. He'll also get labs done 2 days and 7 days post infusion to check his calcium, potassium and magnesium levels. This infusion can make these levels go wonky. If necessary, we'll give supplements to get his levels back on track. 

Love those PJ's. Yes, his glasses match.

Colby and his buddies playing Boom-Boom-Balloon. 

House: The BIG demolition weekend is now just 24 hours away! I'm so excited I can hardly stand it, seriously! We've all been very busy gearing up for it. In the past week, we've knocked out several walls (plaster and wood lathe – so dirty and dusty), removed the kitchen cabinets, taken up the linoleum in the kitchen. Also been recruiting people to come help, making a “schedule” of sorts so we don't have too many or too few workers in the house at once. Yesterday a port-a-can was delivered and set up (woo hoo) and the electric and water has been shut off to the main part of the house. We'll still have water and electric in the basement so we can run cords for power tools, heaters, etc. I cannot believe our big demolition is finally here. Seems like we've been working toward this weekend for a long, long time. Can't wait to see it at the end of the day on Sunday. So if you're coming to help over the weekend, here it is. All the plaster crumbs sitting around in buckets and on the floor has to be taken out to the dumpster. The garage is full of old carpet, drywall, strips of wood lathe, all needing to be taken to the dumpster. 

See those full buckets? See all that mess in the floor? It all has to go in the dumpster. More walls coming down, too.

Peek-a-boo. I see through you. This is looking through 2 bedrooms into the bathroom. We've been busy! 

Me: Well, you can see how I've been spending my time. Colby and house. House and Colby. Not much else. Still working my part-time job. I've fallen off the wagon from that whole fitness/eat healthier kick I was on for a while. Yes, I know I should give myself and my health as much priority as I give these other things in my life. Just haven't been doing it. Whatever. But then again, swinging a hammer at plaster is exercise, yes? Just shouldn't eat a sausage egg biscuit on the way up there to do it, haha.

Okay, need to put in some laundry. I have 2 meetings today. Colby's homebound teacher will be here at 4:00. And I think Colby and I will make some cookies tonight to take to the workers this weekend. We'll see how my energy holds up. Bye for now. Can't wait to share more house pics soon!

HOUSE UPDATE

Well, it might not look like much to you, but I'm loving this house more and more each day. I'm shocked at the amount of work just a few of us have been able to do in a short amount of time. We have soooooo much to do, trying to get some of the demo out of the way before our BIG demo weekend on Feb 28 and March 1. Still need volunteers to come help us tear up some crap, by the way. Don't be shy, step right up and volunteer. All levels of demolition wanted and appreciated. Even if you think you couldn't be of help, I guarantee you could. 

So what have we been up to? A picture is worth 1000 words:

The living room and the 3 bedrooms had these nasty carpet squares. Once those were peeled off, we had to scrape off this sometimes spongy, sometimes dry rotted backing. It was awful. My least favorite demo task so far. But it's DONE now, all 4 rooms, making me very pleased. 

We took out the wall/hallway from the dining room leading back to the bedrooms. This gives us 3 feet more open space. Before:

After:

Bedroom #2: We now have this closet knocked out and the trim and baseboards removed. That is the original house behind the drywall.

Bedroom #3: Closet now bye-bye. Yep, that's the original exterior of the house underneath the drywall.

Living room: drop ceiling, gone. Trim and baseboards, gone. Much happiness.

COLBY UPDATE

We weren't able to go swimming today, with there being 8 or so inches of snow in the parking lot and all. That's a bummer, because Colby sure does love his swimming. If only he had half that much enthusiasm with school/academics. I'm telling you folks, that child flat out does not give 2 flying flips about anything related to school. He doesn't want to learn new vocab words. He doesn't care to learn math. Doesn't even try to send e-mails or pay attention during a science experiment. He completely shuts down whether it's at school, here at home with a homebound teacher or me. He simply ISN'T going to do schoolwork. His IEP meeting is coming up soon and I'm just going to say, yeah, keep the same old goals we had last year. Swimming to Colby, super fun. Schoolwork to Colby, pure torture.

As I've blogged before, Colby has been having some skin issues. In particular his left ear and his bottom. We'd taken him to Cincy Children's to Wound Care to see what they had to say about these problems. Last week I was so excited. I thought Duoderm was going to be the solution for the sore on Colby's ear. It looked 95% better for several days, and then boom. The next day his ear busted open and was bloody again. Rage. Fury. Irritation. Overall it's better, but still not healed. His bottom looks much, much better. We've been lathering on barrier cream with every brief change. Also every hour turning him up on his left side, then onto his back, then to the right side, then to his back. Repeat. We're flipping that boy like a pancake, and it's working. Now if we could just find the solution to that ear!

Want to hear the good news about nursing? Too bad, I don't have any. We've had yet another nurse quit. This one gave one whole week's notice. I know this is an ongoing problem with many, many other SMA families. I hear about it all the time on Facebook. It's just so frustrating. The nursing agency was quick to find a replacement. We'll see how it goes. Actually Colby and I have had the best time the last couple of days with no nursing. The bad weather caused the nurses to call off, and that was just fine by us. I got to sleep in until 7:30 both yesterday and today. Aaaaah, sweet, wonderful sleep. Colby and I spent the whole day yesterday in our pajamas. I got him up in his wheelchair on my own using the Hoyer lift. Made him work on his vocab words for school. That was a waste of 20 minutes. Both days I'd give him his meds at 8AM then cuddle up beside him for a few minutes. It was so wonderful. Just a few precious, sweet, quiet moments with my sweet boy that we don't seem to get very often.

Colby's high school friends came over last week and educated us on all things Star Wars. I'm clueless about such matters, but these boys are all into it. So next time they come over, we'll be having movie day so they can watch Star Wars with Colby and tell him all about it. I have no idea which movie. Doesn't matter to me, it's not my thing. But I loved watching them talk to Colby about something teenage boyish. They were telling Colby their favorite characters, showing him pictures. I have no idea if Colby will like the movie or not. We'll see. Time for Mama to pop up some popcorn and make cookies for movie day!

That sums up what's new with kid lately. I'm getting sleepy and have to work tomorrow. More blogging soon.

IS THAT A HAMMER IN YOUR POCKET, OR ARE YOU JUST HAPPY TO SEE ME

HERE YE, HERE YE, LISTEN UP - DEMO DATE HAS BEEN SET!!

Or I should say, Demo Weekend has been set! Grab your hammers, work gloves, buckets and probably some ibuprofen and join us SATURDAY – FEBRUARY 28 and SUNDAY – MARCH 1. A few friends, my dad and I have been chipping away at projects around the house, but Feb 28 and March 1 is the BIG demo weekend. Among other tasks, we will be gutting 3 bedrooms and 2 bathrooms. We also need to gut the ceilings in Colby's area to allow for the installation of a handicap ceiling track system. If the weather cooperates, the gutters need a good cleaning out also. LOTS of work for both novice and experienced folks who want to help get this project going.

You can't wait to jump right in and help us demolition this dirty old house, right? I'm trying to come up with a “schedule” because we don't want too few or too many people in the house at once. Asking volunteers to work a 4-hour “shift” either from 9A to 1P or 1P to 5P on either Saturday or Sunday. That way hopefully nobody gets too tired. Wanting about 10-15 people on each “shift.” So, look at your calendar and let me know what works for you. Again, all levels of demolition experience are wanted and appreciated.

If you are busy that weekend but still want to help, seriously, that is not a problem! There is lots and lots, and lots and lots, of work to do. Someone is working at the house pretty much every day. So if you have some extra time and energy, let me know when you're available to come demo. I'll make sure you get your chance to be a part of our “project” (as most people call it when they walk in and look around.) I call it a vision in progress. I have no doubt in my mind this house will become a beautiful, functional home for Colby and me. Lots and lots, and lots and lots, of work to get there, but we'll get there.

Please contact me if you want/can help. I appreciate everyone's interest and willingness to help us get 'er done.

BUSY - GOING TO GET BUSIER. NEED COFFEE - AND VODKA

How have we been for the last week? Pretty darn busy. Colby is staying healthy and I'm staying sane, barely, which are the main priorities. With buying this “fixer upper” my life went from crazy busy to over-the-top incredibly, keeping me up at night busy. But never fear, Super Mama is here. I got this. I have an Origami Owl charm that says “Find Joy in the Journey” and I believe there is a lot of truth to that. I've waited years for the opportunity to have a handicap accessible home for Colby. No sense freaking out about it. Is there a ton of work to do, yes. Do I have a clue on how to do any of it, no. But I have people who want to help, and will help, so it's all going to work out wonderfully. I've already had my coffee this morning, can't you tell?

Today is swimming day for Colby. He was so stinking cute in the pool last week. Sometimes I have to remind him, Colby, this is swim/exercise time, not float around the pool/spa time. Last Tuesday he was “swimming” like nobody's business. He was moving those legs as much as he possibly could. I was even seeing some movement from his hands and elbows. Hoping today brings more of the same. Then tonight the nurse and I are giving him a much-needed hair cut and bath. He also has speech this morning and we have a supervisor meeting with the nursing agency. Crazy busy Tuesday.

Hey guess what! We've had no heat since last Wednesday. Isn't that super fabulous? Yep, the furnace went out in the apartment last week and as of 8:32 today, it's not fixed yet. Maintenance looked at it last Wednesday and said he fixed it. Uh no, no he most certainly did not fix it. Came back over on Thursday, said he had to order a part. Brought us some space heaters, which constantly trip the breakers. Oh yeah, that's really a solution, Jackhole. Went over to the office yesterday and said seriously, FIX THE FREAKING FURNACE. The part is supposed to be in today and we will be “first on the list” to get something fixed today. Yeah, we'll see.

Met with the contractor last week and we are getting closer and closer to a final floor plan for the house! That's wonderful, thrilling, fantastic news! I'm going to blog more about that in a couple days. Just know that if you have said you can/would love to help with the house, you'll be contacted in the next week or so. We're getting ready to do some serious demolition. So excited I can hardly stand it.

This past Saturday I worked. They have moved our office to a new location in the pharmacy. I was totally discombobulated, and probably will be the next several times I work. I only walked back toward my old office 3 times. Later that night we went and had dinner with family. Had to stop by my mom's first and pick up the aluminum folding wheelchair ramp. Had to move 2 vehicles and try 2 doors to get Colby inside, but we managed. It was a great evening. Sunday I showed the house to some friends. It's so funny how everyone has different opinions and ideas. I'm taking it all in stride. I have no experience in redoing a fixer upper, so I've listened, made mental notes, and tried to sort it all out. It's all going to fall into place, I just know it is. We may have to go to Plans B, C, D and E, but we'll get there. Make take lots of band-aids and tears, but months from now, we'll look back and say wow, look how far this beautiful house has come. Makes me tear up thinking about it.

I need to get going. I've had a shower but put my pj's back on. Need to at least get dressed before people start showing up for Colby's appointments. Time to get this busy day a-goin'. More soon.