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.

COLBY AND HOUSE - What else would I be blogging about?!

You already know what I'm going to say. Sorry it's been a while since I've blogged, been really busy. Well, it's true! Going to get in this blog update before hitting the hay. To use a friend's quote, I am one tired tater!

Sweet Boy: Colby got his Zometa infusion last week. Luckily we can do it here at home instead of having to go to Cincinnati Children's. He had 2 side effects from the infusion, fatigue and low potassium. He actually took some naps last week, which is very unlike him. The day he got the infusion he took a 3.5-hour nap, wow! Actually his potassium was a bit low to begin with. The low-end range is 3.5, Colby's was 3.3. Going to have to figure this out. But then his labs after his infusion showed his potassium went down to 3.2, then to 3.0. We have him on a potassium supplement and they will come draw labs again next week. Not liking this development at all. He acts okay, but I'm a bit freaked out about it. The kid has enough to deal with, and I want to get this potassium issue resolved for good.

Colby started back to school yesterday. He has been on homebound schooling since the first week of January. I pulled him out of school because of the flu and cold weather. We started out slowly, just Thursday and Friday this week. He did awesome! He jabbered, and jabbered, and jabbered yesterday from the time he got up until the time he went to sleep, so I think he was super excited to get back to school. Probably super happy to put some distance between him and me. Can't really blame him. I do have a tendency to hover around him and kiss on him 1000x daily. Can you blame me? Have you seen that child's beautiful, cute, sweet, handsome face?!

Mi Casa: Since the big demo, everyone has been asking what's new with the house. Lately the weather hasn't exactly been cooperative. Last week we got a foot of snow and this week lots of rain. But we have done a few things. Went and picked out the color for the new roof. Red, by the way. After demo, we noticed another layer on the kitchen floor. Are you freaking kidding me? Well, it's gone now. We took off a layer of subflooring stuff, then there were green and cream colored tiles, then some masonite layer under that. Then finally we got down to the original hard wood floors. We did have professionals come in and take out the chimney from the top down to the roof line. Now it's up to us ordinary, non-construction type people to get down the rest of it. Hey, guess what, bricks are heavy! About 5 or 6 of those in a bucket and that's enough to haul out to the dumpster. We'll work more on that over the weekend. Still working on finalizing a floor plan. Met with the contractor this week and feel much better about some things. I've been working on a grant that will hopefully pay for an overhead motorized lift system for transferring Colby. This would make a huge difference for us if we can get this fancy-schmancy lift installed, both for Colby and for his caregivers. It would make all our lives easier. So fingers crossed I can schmooze/convince the review committee to give us this grant, because if not I certainly don't have an extra $14,000 right now to get one installed!

Little ole me: I had a cold for 2 days last week. I was smart, not stubborn like the last time I started feeling ill, and started taking care of it immediately. Went and spent $34 at Kroger on Zicam, Emergen-C, DayQuil, NiteQuil and cough drops. Tried to drink extra water and rest the best I could. I was scared to death of giving it to Colby. I had no choice but to be near him. Because of the snow, we went a day without nursing. So when I was in Colby's room I wore gloves and a mask. Went on a sanitizing frenzy. Luckily he didn't get sick, and I was able to kick it fairly quickly. I think when Colby's at school it's much harder on me than it is on him. I miss him terribly when he isn't here. The apartment is so quiet it's almost scary. No vent running, no jabbers, no Spongebob on TV, no nurse doing stuff or making chit chat. Just me, myself and I. Alone with my thoughts. That's never good, haha.

Okay, that's a quick wrap-up of what's been going on around here. More when I have time. Gotta get those bricks in the dumpster first!

HOUSE PICS

Before and after demo pics

Living Room:
Before

 After

Dining Room and Hallway:
Before

After:

Kitchen:
Before

After

My bedroom:
Before

Colby's End: Bedroom, Bathroom, Bedroom
Before

After: This is my bedroom, a bedroom, the bathroom, and the other bedroom.

Half Bathroom:
Before

After

DEMO IS A DONE DEAL

How can I summarize the gratitude, thankfulness and pure joy I'm feeling right now? I can't. I honestly can't find the words to describe the overwhelming emotions I've been having the last few weeks, and especially the last 2 days. This house thing is REALLY happening. I told a friend last week it still doesn't seem real, that the work and plans we've all been doing are for someone else's house, not ours. But it is for Colby and me, and I'm truly feeling loved and blessed and lucky and overwhelmed with happiness to the moon and back.

As of 3:50PM, Sunday, March 1, demolition was DONE!! Do you hear me? Are you reading this? As in every wall AND ceiling has been stripped down to the studs. All the flooring has been taken up. Tub, sinks and toilets, removed. And it has all been hauled out of the house. Do you have any idea how huge of an accomplishment this is?! We filled 2 dumpsters, and we're waiting for the 2^nd dumpster to be picked up and a 3^rd dumpster to be delivered. There is a giant pile of wood and lathe in the front yard, and every bucket and trash can we have over there is stuffed full of debris, sitting on the front porch waiting for the dumpster. That's an incredible amount of work for a group of people to get done in 14 hours. I've never seen anything like it - it was amazing to watch. We had on the average 15 or so people in the house at one time working together. Family, friends, high school students, friends of friends, quite an eclectic group of people. I think every age group and level of demolition experience was represented. To watch everyone work together was so awesome. And I mean people WORKED THEIR FANNIES OFF! People were willing to get dirty, take direction and do whatever it took to get the job done. I couldn't have asked for anything better. The whole demolition process went smoothly. No huge surprises and no major injuries, thank God. I'm still trying to absorb it all. To say our house will be built from love is an understatement!

I'll have pics soon. Just wanted to let everyone know things are moving along quickly and nicely on the house. A huge THANK YOU to every person who had anything to do with our successful demotion weekend. To say thanks doesn't seem like enough. I'm truly grateful to anyone and everyone who helped us get to this point. Today is a much-needed catch up day. Laundry, go through mail, order some supplies for Colby. He is getting labs drawn in the next hour or so. New nurse needs to get comped on equipment so he can start working here. Pretty sure Colby's high school buddies are coming over after school. Got to run.

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.