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.

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.