HOW HAPPY ARE WE RIGHT NOW? VERY, VERY

We are just as happy as can be around here. All is well and right in this mama and sweet boy's worlds. Last week we hosted Thanksgiving. I think there were 20 of us. No way we could have ever gotten half that many in our former apartment. Guests included my parents, aunt, cousin and his family, brother and his family, longtime friends of the family and a couple of Mormons (long story.) The food was delicious and the company was fabulous, too. I was so glad to be able to host a holiday at our home instead of having to pack up all of Colby's stuff and travel with him. So much easier on Colby and me if everyone comes to us. We divided the cooking chores among ourselves. Only thing I had to make was my famous, super yummy carrot cake. Somehow we ended up with a ton of extra turkey. Guess my dad should have only fried up one and not two! Oh well, don't think I didn't Ziploc baggie up the extra and throw it in the freezer, because I most certainly did. I would love to learn how to make yeast rolls between now and next Turkey Day. We'll see. Not like I can't find enough stuff on any given day to keep me busy and practically cra-cra. Still don't have everything right where it needs to be. Took me forever to find the potato masher on Thursday. But eventually it showed up, just like my checkbook did after being MIA for over a week. I'll be very glad when things are a little more settled and organized around here. We've made leaps and bounds in those categories, just need to keep pressing forward until it's all done.

And, as of today, I am officially a homeowner again! After almost 9 years of being in an apartment, I am now the proud owner and mortgage payer to the most perfect and beautiful home for Colby and me. The original plan was to put Colby on the bus at 9:15. Nancy and Darrell were going to pick me up at 9:30 and we were going to ride together to the closing. Nope, NEW PLAN! Colby's nurse called off sick today, so he wasn't able to go to school. Called Nancy and Darrell and said hey, guess what, kid is going to the closing with us! No problem. They were very helpful in loading Colby's equipment and getting Colby into his wheelchair. The closing was a breeze. All the papers were drawn up. Everybody knew what was expected and bing-bang-boom, 20 minutes later I had signed the mortgage papers. Also got my homeowner's insurance all lined up and an amortization schedule for payments. Hopefully I'll be able to pay some extra towards the principle here and there. That's my hope anyways. Talk about Santa coming early. I bought a house! I had thoughtful, generous, caring people to help me get it upfront, along with tons of donations of goods and labor to get all the work done, but yes, I'm a homeowner again and man, does it feel awesome. Colby and I are truly blessed beyond words to have this opportunity.

I was trying to get Colby to watch Supergirl. I thought he would like it. You know, cute girl in a cape flying through the sky saving people. Nope. I can hear him down there fussing like crazy. Better go change the channel before he sets off his high heart rate alarm! More soon. Again, please, please know that if you donated to our house fund in any way, how very much it's appreciated. I love this house. Absolutely love everything about it. Colby and I are so happy here. Thank you, THANK YOU, THANK YOU to everyone who took an interest and helped along the way. Every time I look around the house, I am reminded of how much help we received to get us where we are today. I am feeling the love, that's for sure.  

Last Wednesday, Colby was helping me make carrot cake by using his switch to run the mixer. 

The gang's all here. Turkey Day 2015.

 

 

 

 

 

 

 

 

 

 

 

Signing the mortgage for our house today! 

 

 

 

ANYBODY ELSE GOT THE MONDAY BLAHS??

Well, I should be going through this mountain of mail that has piled up over the last couple of weeks. It looks daunting, indeed. Instead I've been goofing around on Facebook and totally not doing what I should be doing. Imagine that!

Sent Colby to school today. He is better, not back to 100%, but much better. His secretions are still yellowish but he seems to act like he feels fine. A big determining factor for how Colby is doing is how well he tolerates sitting up. Saturday he sat up for 2 hours and yesterday he sat up for a little over an hour, both times with no problems. So I thought he would do okay at school today. When the nurse was doing his CoughAssist treatment, Colby coughed up a large hunk of something. His oxygen dipped down to 49. Yes, it happens that quickly! But then as soon as the nurse suctioned his trach and removed it, his oxygen stabilized. Since then he's been just dandy. I assume an oxygen drop like that wears Colby out, so I strongly encouraged him to take a nap today. In other words, I turned off the TV and lights, scooted him over in his bed, and curled up next to him. I don't care if he's 13 years old, you're never too old to snuggle up with your mama! We had 25 minutes before his afternoon respiratory treatment was due. Perfect for a quick nap. Nope, not that kid.

Had a follow-up endocrinology appt today. I had my blood drawn at my dr appt last month with my family doctor. Of course they were supposed to send the results to my endocrinologist. But did they?! Noooooo. Family doctor had called to say my levels were high and to cut back on my levothyroxine dosage. Uh no, I'll follow my endocrinologist's advice, thank you. So as soon as she gets the results, she'll call and let me know if we need to make any changes. Seems like we've been constantly changing my dosage since having my thyroid removed. I just want my energy level to return halfway to normal. Tired of being tired all the time. Need to get more focused on taking better care of myself. Yeah sure, I'll squeeze that right in. Eventually it's going to have to be a priority, but I swear, right now I can't handle the thought of one more thing to keep track of and/or do.

They came today and finished hooking up/turning on the whole house generator. Oh my goodness, I'm so relieved to have something like this as a backup for Colby. With all of Colby's medical needs, a backup generator is pretty much a necessity. At the apartment, if it started storming or icing, our backup plan was plug everything up and just pray the electric stayed on. The generator was paid for by the Molly Johnson Foundation, and Corrigan Electric donated the labor for getting it installed and up and running. What piece of mind we'll have if the electric goes out! This has greatly approved our quality of life and is much appreciated.

I'm at the kitchen table typing this, listening to Colby's nurse talking to a new nurse who is training/shadowing here. Yes, I agreed to letting yet another nurse come here and help with Colby. Honestly, it's against my better judgment. I counted it up. In the last 12 months, we've had 14 nurses come to our home to take care of Colby. And of those 14, do you know how many are still with us? The original 2 we had at this time last year. Holy shit on a shingle, are you freaking kidding me?! I don't know if she'll work out of not. Honestly, I'm just not in the mood to deal with someone else taking care of Colby at the present time. Blah. If there wasn't so much to get done around here, I'd probably tell the nursing agency to stick it where the sun don't shine.

We'll be scheduling the house closing very soon! In a matter of a couple of weeks, I'll be a homeowner again. So exciting! I'm in the process of shopping around for homeowner's insurance. We'll also get the utilities changed over to my name sometime this week. Baby steps. Slowly get there, but we are getting closer to being moved, settled and officially homeowners!

Okay, now that I've wasted some time blogging, think I'll go watch some of the Bengals game. Maybe at halftime I'll get some mail sorted. Looking doubtful! Very doubtful. But you never know, I may get a burst of energy to get something done. Bye for now.

LONG UPDATE - LIFE IS GOOD - CRAZY AS $&*! - BUT REALLY GOOD

Wow oh wow! The last week sure has been a total whirlwind for us. I've experienced every emotion you can imagine lately. I've been happy, stressed, worried, overjoyed, exhausted, exhilarated, thrilled, amazed, humbled, glad, and the list goes on and on. My brain is churning with thoughts and emotions lately. Let's see if I can sort some of them out.

The big news is...we are moved! Today marks the 8^th day Colby and I have been in our spacious, well-lit, functional, beautiful new home. And yes, I'm a little on the biased side, it is absolutely beautiful. Sometimes I have to remind myself this is our new residence! It's like we're on vacation or house sitting or something. The move went very smoothly. Since we moved only 3 miles down the road, we were able to take things over here and there as they were ready, so I tried get packing done ahead of time. Sorted through drawers and closets and get rid of things we didn't need. I had 8 people help me Thursday before last move the first load of big stuff. I had help in setting up my new kitchen. Friday before last, more packing, moving boxes and some small furniture. The shelving company that installed Colby's unit came, uninstalled the shelving, brought it over and put it up in Colby's new room. Oh my, that sweet boy has soooooo many supplies! Then last Saturday was the BIG day. We got most everything else out of the apartment, and most importantly, got Colby's hospital bed moved. Let me tell you, that was a challenge! I knew it would be. We tried to keep it as assembled as possible. It took 5 men to move the columns and motor into the house. But they did it, and Colby and I were able to spend the first night in our new home last Saturday. Then last Sunday some of us went back over to the apartment and got every last item out. At that point, there was no organization, just throw the crap into boxes and let's get out of here. Are we totally moved in, unpacked, organized with pictures on the walls and a place for everything and everything in its place? Don't be ridiculous! Of course not! Colby has what he needs and that is what's most important. The rest can happen slowly, which it is. Seems like daily we get a couple more boxes unpacked, figure out better logistics for something, etc. Time to get ready for the holidays you know! Colby and I are hosting Thanksgiving and I can't wait to have my family here to share our new home. I might be serving turkey from the deli sandwiches and Stove Top. I'll figure out something! Having the family here will be so much easier on Colby. I feel thankful for every day I have with Colby, my family and friends, but of course this year will be extra special for us here in the new abode. I turned in the apartment keys last Thursday, and man, that was an excellent feeling. So long old, cramped, dim, yucky apartment. Sure won't miss you one bit!

Then came along the green snot and camera crew! Whaaaaat?! Colby is trying to get sick. No, no, NO! Could be the change in his environment, could be the change from warm to cooler weather. Who knows. They had to do an emergency trach change at school last Wednesday. I left work early to pick Colby and his one-on-one nurse up after that. And oh yeah, I'm pretty sure I had a panic attack in the parking garage at work. Those just are no fun at all. His trach secretions were so thick, dry, almost nonexistent, and that ain't good. Then the next day, it was like a switch. Colby's secretions were everywhere! I don't know the last time I wiped and suctioned the child's nose that much. Secretions went from thin and clear to thick and yellow, then started seeing some green and also a tinge of blood in his trach. Time to initiate sick-kid protocol! Got up through the night and gave him an extra IPV and CoughAssist treatments. Kept him home from school Friday and took him to the pediatrician's office. He's doing a round on Omnicef, and hopefully we've caught this whatever-it-is early. Can't have my sweet boy sick around the holidays. No, no, NO!

Then I get a call from the couple who helped us get the house that WAVE3 news wants to come out and do a Feel Good Friday story on us. About how they helped us get the house, all the donations we've received, etc. OMG you have got to be kidding me?! On top of moving and all the details of that, along with Colby getting sick, a TV station wants to get all up in here and film us?! At first I made it very clear I didn't want to do it, especially with Colby not feeling well. But then I figured what the heck. At the very least I was hoping to bring awareness to SMA. And if we received extra donations for the house, that would be hunky-dorry, too. So we did it. Got home from the pediatrician's office Friday and had 3 hours to get the house looking better, get Colby and me “camera ready.” Holy crap on a cracker, we've been so busy lately! My advice to you, if you come over anytime soon, would be don't open any closet doors, as you are at great risk of something falling on your head for sure. I was slinging stuff in closets like somebody was paying me to do it! The newsman wanted that “just moved in” look for the article. Well, no problem there, because we just moved in for crap's sake. We don't even have TV's hooked up yet. They interviewed Colby and me, then Nancy and Darrell, the generous, wonderful, sweet, caring, giving, amazing couple that has helped us not only get this house, but also all the in's and out's of redoing it. That dude interviewed me for 30 minutes. I teared up ONE TIME, for about 3 sentences, and of course that was what he chose to use in the piece. Ugh. Whatever. I'm just glad it's over. I was a nervous wreck.

Yesterday was Colby's D (diagnosis) day. It was 13 years ago yesterday that I was told Colby probably had SMA Type I. I was also told he would die by the time he was 2 and that there was no cure or treatment for his disorder. The shithead neurologist told us there was no hope and there was nothing we could do. No matter how hard I try, or no matter what other wonderful things we have going on at the time, November 14 creeps up every year and bites me right in the butt. Every emotion you can imagine was in full force yesterday. I tried to stay busy, tried to think of the good. But at times those overwhelmingly sad and fearful emotions came flooding back. Obviously that craphead neurologist (still can't stand him to this day) didn't know us very well, did he? Within 2 weeks of Colby's diagnosis, we were scheduled with the wonderful doctors at Cincinnati Children's, who had options for us instead of hopelessness. We also met an amazing SMA family here in Kentucky who lived close. They showed us how to not only survive SMA, but live a meaningful, happy life in spite of the odds and diagnosis. Colby has certainly come a long way. For that I'm extremely grateful. I really don't take anything for granted. Not Colby's health, not my health, not my parents' health and never-ending love, and not the unwavering love and support of countless family and friends. Thank you to everyone who has helped us, loved us, said a prayer for us, and supported us all these years. We sure keep it interesting, don't we? Time to inhale, exhale, just breathe, and make the next year the best one ever. Somehow I just know the months ahead will be fantastic for Colby and me. Bring it! We'll savor every moment and make many happy memories in our new home, I'm quite sure. Signing off now – time to get sweet boy up and ready for the day.

NEW HOME - ARE WE THERE YET?! ALMOST!!

Quick update while I watch the Broncos/Packers game and the World Series. Also watched the Bellarmine/U of L basketball game earlier. Ah yes, it's the most wonderful time of the year! Baseball is ending, football is in full swing, and basketball is starting up. Makes me happier than a pig in slop.

Monday I had to pick Colby up early from school. He was having trouble keeping his oxygen above 93/94 and his heart rate was higher than normal. That's no good. Plus his secretions were thick and stringy. Also not good. For the next couple of days, we gave him and extra IPV treatment each day. Tuesday it was cold, damp and rainy out, so I decided against taking Colby swimming. I'm sure he didn't agree with this decision, but I had to do what's best to keep him healthy. His speech therapist came over instead. She found him some games he could play through his eye gaze. He didn't seem to thrilled about playing them. I mean really? What 13-year-old boy doesn't like to play video games?! That would be mine.

Then the doozy came yesterday. I could tell when I was giving Colby his IPV and CoughAssist treatments something was up. I felt resistance when I suctioned Colby's trach. He was having trouble again keeping his numbers at average. Long story short, my mom and I ended up doing an emergency trach change for Colby. It's very seldom his oxygen drops dangerously low like it used to back in the “pre-trach” days. Saturday is dipped down to 31. Thank goodness it was only for a few seconds, although when that's happening, it seems like an eternity. There was a big plug on the end of Colby's trach. I thought oh hell, he's getting sick. Although his secretions were not discolored. Long story longer, his humidifier hadn't been plugged up for a couple days. Guess that explains the plug, huh? He's been fine since we fixed the problems yesterday. Sweet boy will keep me on my toes, for sure.

Notice I didn't say the nurse and I changed out Colby's trach. Probably shouldn't surprise you to hear this, but we've had another nurse quit. The nursing agency called and said she gave her notice. Not a 2-week notice, just notice she was leaving the agency. Perfect, just perfect. She was scheduled to work next weekend when we're supposed to be moving. I counted it up. We've had 14 nurses in our home in the last 12 months. Of those 14, we have 2 remaining. And those 2 have been with us the longest! One has worked here part time for over 2 years and the other one is our only full-time nurse. He has been with us about a year and a half. Makes me sick how these home health nurses have been. I'll deal with hiring and training a new nurse after our move. We'll just have to make due between now and then.

What about the house? We're getting so, so, so, so close to being ready to move! Last week was busy, busy. We painted the basement and scrubbed the floor down there. Appliances were installed. Fireplace was hooked up. Towel rods, door stops and toilet paper holders were hung. Lighting fixtures were installed. Flooring was installed. Counter tops were installed. Very productive week! I've been packing and organizing like a crazy fool around this apartment. Dishwasher needs to be installed, then it'll be time for the final inspections. Then once we pass those, which surely to goodness we will, we can start moving! We've also been working on building a temporary ramp to get Colby inside. Our deck and ramp won't be built until later in the month, and uh yeah, we sorta need a way to get Colby in the house.

Thank you to everyone who checked on Colby through the week. I thought he was getting sick. Then later in the week I started feeling icky. Not a full-blown cold, just super tired with itchy throat and a bit of a cough. I wasted no time. Started taking Emergen-C and diffused my OnGuard doTERRA oil. Drank more water and took my vitamins. I feel fine now. Tired of course, but I'll be that way until we're moved and settled.

Colby had trick-or-treat at his school on Thursday. No way could he wear the same Halloween costume twice! Oh no, that just wouldn't do around here. K-Mart had costumes half off, so I found Colby this one. It's called Soul Taker, but I told Colby since we were reading Harry Potter, we'd tell people he was a Death Eater. We didn't go out and do anything for trick-or-treat last night. Colby had had the choking incident and I was tired and groggy from taking sinus meds, so I was a lame mom and didn't take Colby out. Thought it would be best if we both stayed in out of the damp and rested. LAME-O! No use worrying about it now. It's over and done. Next Halloween I'll make sure I make it up to Colby.

Here are some pics. I'm getting in bed. I'll keep you posted on the moving situation. Hopefully it will be sooner and not later. We're so ready! 

 Love this little Death Eater to pieces!

Not to brag, but isn't our house looking amazingly gorgeous?!