TGIF AND HAPPY MARCH MADNESS

Trying to play catch-up today. I'd been doing so good on exercising regularly, then starting a couple weeks ago that changed. Trying to get back on track. Walked 40 minutes this morning. Not exactly marathon training but hey, 40 minutes is better than 0 minutes. Laundry, it never ends! There are only 2 of us in this house. How can we have so---much---laundry! Did a load yesterday, on my 2^nd load today, and have a load waiting. Bleh to sorting, pretreating, washing, drying, folding and putting away clothes. I swear if they made disposable clothes I would buy them! Now for blogging! Haven't blogged in a while and feel it's much overdue. So here's what's new in our little corner of the planet.

Colby was having some high heart rate issues. I don't mean off-the-charts high, but rather, he was not sleeping well. When he is sleeping, his HR should be in the 70's, sometimes even the 60's. For several nights in a row, Colby's HR was averaging 115 throughout the night. I know many SMA kiddos wake up through the night needing to be turned, suctioned, etc. Luckily that just has never been Colby. He usually sleeps through the night. But recently, he would sleep fine, then at various times of the night set off his HR alarm. Sometimes it would beep a few times and be done. Other times his HR was up and would stay up for well over an hour, despite me trying all my mama tricks to settle him down. This high HR stuff was freaking me the freak out! I mean I hit total panic mode. We went through several nights where either of us got much sleep at all. With SMA and Colby being nonverbal, you just never know what to do. I didn't want to overreact but then again, I certainly didn't want to under-react. I was at my wit's end. Long story short, he seems to be fine now. He has slept well the last few nights. We have started setting his high HR alarm at 100. That way I'll know right away if he's waking up and/or having issues. Hoping that mess is over and done!

So, with interrupted sleep and added stress and worry, my migraines paid me a visit. With a vengeance. I felt like absolute hell for a couple of days. A frazzled zombie with a screaming headache, that was me! Once I realized Colby's HR was high only at night, that took away a lot of worry. I can deal with sleep issues, but not cardiac issues. You just NEVER KNOW with SMA. You can't ignore any symptom or change in behavior with our kiddos. They are simply just too medically fragile. I've been watching and hovering over that kid more than usual! If he could reach up and throat punch me, I'm sure he would! Now that he seems to be over whatever it was he had going on, and we've been able to get more solid sleep, my migraines have gone bye-bye.

Funny eye gaze story. The principal at Colby's school paid his classroom a visit. So what does Colby do? Looks at his eye gaze and says, “shut the front door.” Yes, I put that saying on there trying to encourage Colby to use his eye gaze more. But Colby, really, did you have to wait and say that when the principal is in your classroom?! He said it not once, but 3 times. Yes, that child is mine. No doubt. Good thing I've never programmed cuss words on that thing!

We still absolutely love, love, love our new home. Love it! We moved in back in November. Did the initial unpacking, put stuff on the walls, etc. Now comes the 2^nd wave. We're having an open house soon. We want all those who donated to our home to come see how beautifully it turned out. Our super-fine, world's greatest carpenter is working on a few items. Getting the garage finished is the biggie on the list before open house. We still have the original, broke, uglyass garage doors on the garage. Plan is to remove the concrete support in the middle, take out the 2 old doors and replace it with a single, bigger new door. So of course there's framing and construction that has to be done before the big door can be hung. So Charlie (world's best carpenter ever and my super hero) has been getting the framing ready. The door has been ordered and that project should be done by open house. Also trying to do some further decorating, patching the yard where the grass didn't come up, etc. If we didn't do a single thing, the house is still beautiful and everyone will be amazed at the transformation. But you know, I'm a chick and you know how we can be. Everything needs to be just so for the open house. As long as kid sleeps and the migraines stay away, I should be able to get some stuff done in the next couple of weeks. Around watching basketball games, of course. Nothing is getting in the way of my March Madness.

Speaking of which, time to wrap up this blog and get to watching b-ball. Go my Hoosiers go!!!!

TUESDAY'S TALES

Colby is getting his 9PM IPV and CoughAssist treatment. I'm on the cough watching my Hoosiers, trying not to cuss excessively. Trying, not succeeding. Go my Hoosiers, go!

The past week was pretty darn good for us. We are finally starting to get back to something of a normal schedule. Well, our “normal” schedule. The new school nurse is working out well. I stayed in the school building last Monday, just in case they needed me. Then last Thursday I stayed within one mile of the school in case they needed me. Hey, what can I say, I have to make sure my sweet boy is okay and safe at school. But yesterday I just let it rip. New school nurse and Colby got on the bus and I was like, bye, see you after school. Last Tuesday we took Colby to pick up his new glasses, then we were finally able to take Colby swimming. First time in 4 weeks I think. Of course Colby loved it. It's his thing. Last Wednesday we took Colby for a PT assessment at The Kids Center. We currently don't have a PT for Colby, and with his complex diagnosis, we kind of really need one. I was impressed with the facility and really liked the PT who evaluated Colby. Colby will be casted for new AFO's next Monday. Next step after that will be get his power chair evaluated and fixed. As Colby is driving the chair forward, it gradually starts to veer off. Usually it's not as issue since Colby could care less about driving forward anyways. But lately he has shown interest and has been trying to drive correctly, so we definitely need to get his chair fixed for him. We finished up the week with Colby getting a haircut at Great Clips on Friday afternoon. Then on Sunday we took Colby up to the local pet shop to pick out a couple of fish. Hey, I'm very proud to say we haven't killed a fish in several months! We currently have 8 little fish swimming around in harmony in Colby's tank. Hope our luck holds out. I always feel badly when I have to give a little fishie the big flush.

Yes, we still love our new house. Actually I think I love it more all the time. It really is perfect for us, exactly what we need. We're having an open house in April. We want all the people who donated and worked on the house to come see the finished project. So there are several things to do before the big day. Went shopping over the weekend to choose fabric for Roman shades in the kitchen. Slowly starting to get the garage cleaned out. It's shocking how quickly you can accumulate stuff! Our biggie to get done is the garage doors. We still have the nasty, broken, old doors on the garage. We're waiting to hear from the world's greatest carpenter. He's going to fix the structure so we can remove the concrete from the middle and have one large door instead of 2 smaller garage doors. Just makes sense with the van, getting Colby out from the side, my inability to back the van up. Plus a few other things to do, then we'll have a big old party to celebrate our beautiful new home. Not sure I'm ready to have 100 or so people traipsing through here, but I'm really excited to see everyone who contributed to the house and thank them in person.

Going to watch the rest of the IU game and then go to bed. Just wanted to let everyone in Blogland know we're doing well. Colby is still the sweetest stinker I've ever seen. Last Friday his teacher asked him how he was feeling. Colby looked at his eye gaze and said bored. Yep, that's my kid. Then today the day nurse was giving the night nurse report in Colby's room. I guess he didn't want to hear it because he said out. Then the day nurse was telling the night nurse how Colby was mad because he made him stay up on his left side for almost an hour. Not Colby's favorite side. Colby looked at his eye gaze and said whatever. OMG it was too funny. He's a hot mess for sure. But he's my hot mess, and I sure do love him. More blogging soon. Peace.

NURSING NEWS - NEVER GOOD IT SEEMS

Yes, it's been forever since I've blogged. Can't say that there's really a specific reason for it. We've been busy, as always. Haven't really been in the mood I suppose. Honestly, I don't know why I haven't blogged too much. I just haven't. Going to fix that now.

Let's talk about one of my least favorite subjects today: nursing. Seriously, I thought a few weeks ago nurses were certainly leading me to a nervous breakdown. Being 100% open here, I went into a “funk” for a couple of weeks. Not really sure if I was depressed, or overwhelmed, or had a case of the winter blahs, but there was certainly something going on with my emotional well being. We were having serious issues with BOTH the home health nurses AND the school nurses. Honestly, the phone calls back and forth to both agencies and the constant worrying I've had about finding new nurses, keeping the nurses we have, training new nurses only to have them quit, etc has been completely exhausting and has been going on for months. So not even worth the effort up until recently. I don't like to admit when I feel defeated and/or unable to find a solution to a problem, but I was definitely there emotionally for a couple of weeks. Family and friends would ask hey how's the nursing going, and I was like, please, I can't even discuss it! Every bad emotion you could have, I had it. Angry at the nursing agencies for not being able to recruit enough nurses. Furious with the nursing agencies when they sent out a nurse to train who ended up being incapable or a total fucking moron. Worried about having new nurses in our home, exposing Colby to them and how they would take care of Colby. Upset that my son qualifies for 16 hours of skilled nursing care per day in the first place. To summarize, it's been rough in the Colby nursing area lately. I started calling around to other home health companies to see if they could take Colby's case. Turns out in our area there apparently is a nursing shortage. Of the 3 agencies I called, only one seemed confident they could staff Colby's case. At least the other 2 were honest with me and said they didn't have enough nurses instead of taking on Colby's case only to under staff it. However, I stuck with the same nursing agency we've been using for over 3 years now, and it's slowly starting to get better, thank goodness! Honestly don't think I can take many more nursing issues. One day I will flip out and fire all of them in one sweep. Then where will we be? Nurseless and pissed off I suppose.

I'm at Colby's school today hanging out in the teachers' lounge, so you know what that means. Yep, training another school nurse. Going to school with Colby is very tricky. You have to know how to drive his power chair. Colby is maybe more likely to have a choking episode when sitting up and tires easily. Basically you have to be more alert with the kid when at school. We had an excellent nurse going to school with him 2 days a week, then another nurse (who is also one of our home nurses and excellent) going to school with him the other 2 days. The school nurse quit to take another job. Her last day with Colby was Jan 7, and we are just now getting the school nursing worked out! It is a never-ending battle! We had another school nurse start with Colby. After 2 days she quit. She said it was because she wouldn't be getting enough hours. Ummm, I'm sorry, didn't you know how many hours this job would be BEFORE you took it?! Such a waste of everybody's time. However, for the most part I believe things happen for a reason. Turns out the school nurse we're training now wants to cut back to part time hours. So maybe she'll be a good fit for Colby. She has caught on to Colby's routine very quickly. She's nice, professional, and doesn't seem to be carrying around a 10-gallon bucket of cra-cra. Fingers crossed this school nurse works out!

The home nursing situation hasn't been much better. We had a former nurse come back to work for us, only to have her quit 5 weeks later. One nurse they sent out here to shadow just wasn't a good fit for our home. In other words, we all thought she was nuttier than a fruitcake. They had 3 nurses “in the pipeline” to work with Colby. Great, fantastic, maybe things will get better. Oh my, don't be ridiculous! Of the 3, one quit the nursing agency completely. Said he got his “dream job” and after being hired, going through orientation and setting up a meet-and-greet with him, he quits the agency completely. Perfect. Just fabulous. Then they had another nurse with trach and vent experience in mind to work with Colby. You'll like her, they said. We think she'll be a good fit for your home, they said. Well, she never made it here because apparently she has some sort of torrid past and once the nursing agency got her background check, they wouldn't hire her. Even better! So that's strike 2. Then they call and say oh, we have a great nurse for Colby. He has worked for us for 5 years and has missed only 2 days of work. He “never” calls off. So he worked here days and guess what?! Oh yeah, you bet your sweet ass it happened, he called off for the next 3 days he was scheduled to work here due to a cold. Now of course I don't want anyone sick coming near Colby. Isn't just so odd that the dude who “never” misses work missed work during Week #1 of being in our home? Somehow I think the nursing agency needs to double check his attendance over the years. Jerkoffs.

But as of today, February 22, 2016, both of these new nurses are showing up and still working for us. I've gotten to the point where no excuse or reason a nurse gives for quitting Colby's case surprises me anymore. And yes, I know there are far bigger problems out here in this big bad world to have. I really do know that. Colby could be sick and in the hospital and we wouldn't need nursing. Or even worse, I wouldn't have Colby and none of this nursing stuff would be an issue at all. So of course I'll take the nursing problems over the alternatives. But for the love of corn, can we just catch a break and find a couple decent nurses who want to work, who aren't crazy and who will show up for their scheduled shifts with Colby?! Am I really asking too much?

Okay, I just had to vent and get all this negative nursing bullcrap out of the way. No more blogging about this stupid shit. Just praying that both the school and home nurses we currently have will stick it out for a while. My next blog will be more pleasant, more positive and about a totally different topic. Any other topic besides nursing, I promise.

FUNDRAISER WRAP-UP

Couldn't hit the hay without saying THANK YOU SO VERY MUCH to everyone to made our fundraiser a success last night. The Women of the Moose, what can I say, you all have always worked so hard to help us over the years. You ladies are awesomely awesome. Thank you to all who donated items. Thank you to those who mailed in donations. Thank you to auctioneer Todd Coleman for stepping in at the last minute when our original auctioneer fell ill. Thank you to all who attended and made the evening really fun. Thank you for spending your Tuesday evening with us and donating to our “get-us-out-of-a-dumpy-apartment-and-into-a-functional-house” fund. Almost $3000 was raised at this benefit – that's amazing! All proceeds from last night's auction and comedy show are going towards the materials needed to get our deck and ramp built. Thank you to Rolan Whitt and Mike Armstrong for making many of us laugh harder than we have laughed in a really long time.

Colby and I are lucky to have so many generous, thoughtful, caring people in our lives. Again, thank you to everyone for your continued support. And the great news is, I can blog about something different now besides the benefit! Not tonight, this mama is too sleepy. But soon. Good night everyone, and again, I sincerely want to say THANK YOU to those who have supported us through the years and especially through this incredible house journey over the last year. Good night.

FUNDRAISER REMINDER AND DETAILS - COME JOIN US

BENEFIT COMEDY SHOW AND AUCTION FOR AMY & COLBY

Tuesday, January 12, 2016

Action starts at 5:30pm

Comedy show starts at 7:30pm

Sellersburg Moose Family Center

1040 S. Indiana Avenue

Sellersburg, Indiana

COMEDY SHOW FEATURING ROLAN WHITT AND MIKE ARMSTRONG

Tickets are $12.00 each

If you are unable to attend, but would like to make a donation, please send to:

Amy & Colby’s House Fund

c/o Darrell & Nancy Shelton

919 Audubon Parkway

Louisville, KY 40213

Yes, I know it's cold outside. That's okay - the comedians will have you laughing so hard you'll warm right up! Yes, I know the fundraiser is on a weeknight. It was the only time we could get the comedy team booked unless we wanted to wait until spring. But what better way to break up a long work week than to join us on Tuesday night!

Just a little background information to explain why we're having this fundraiser: My son, Colby, was diagnosed with Spinal Muscular Atrophy (SMA) Type I, when he was four months old. SMA is a rare neuromuscular disorder that weakens his abilities to walk, speak, swallow and most of all breathe. Colby requires complete assistance with all activities of daily living. However, his brain is not impacted by SMA. Colby is a bright boy who enjoys socializing with others. Recently we purchased a fixer-upper house to get out of the tiny apartment we had lived in for 8 years. Over the last year, the house has gone through a complete transformation. It was gutted and redesigned to accommodate Colby's needs with items such as a roll-in shower, open floor plan, ramp to get into the house, whole house generator, wood laminate flooring and other amenities to improve Colby's quality of life. This benefit will help offset the nearly $50,000 in out-of-pocket costs needed to make the once rundown, old house into our beautiful, functional home.

These two comedians are well-known and perform across the country. Mike Armstrong was raised in Louisville. He gets a lot of his material from his experiences as a cop and from raising 5 children. He is a repeat guest on the Bob and Tom Show. I've seen him firsthand and trust me, this guy is hilarious. Rolan Whitt is also a Louisville native. He has worked with some of the biggest names in the business, including working as a writer for the former host of The Tonight Show, Jay Leno. While stand-up is his forte, he is a versatile performer who also does improvisation and hypnosis, apart from his comedy.

We're still collecting auction items if you have something you would like to donate. We've collected many great items so far, but my computer isn't cooperating and currently won't upload photos! I'll try again tomorrow. 

Thanks to everyone who has donated and thanks to everyone who is planning to attend on Tuesday. See you then! 

FUNDRAISER DETAILS - PLEASE JOIN US IF YOU CAN! IT'LL BE A GREAT NIGHT!

BENEFIT COMEDY SHOW AND AUCTION FOR AMY & COLBY

Tuesday, January 12, 2016

Action starts at 5:30pm

Comedy show starts at 7:30pm

Sellersburg Moose Family Center

1040 S. Indiana Avenue

Sellersburg, Indiana

COMEDY SHOW FEATURING

ROLAN WHITT AND MIKE ARMSTRONG

Tickets are $12.00 each

If you are unable to attend, but would like to contribute a monetary donation, please send to:

Amy & Colby’s House Fund

c/o Darrell & Nancy Shelton

919 Audubon Parkway

Louisville, KY 40213

Colby and I have a longstanding history with the Sellersburg Moose Family Center. My dad/Colby's grandpa has been a Moose member since 1984. The Moose has held several fundraisers for us since Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type I, when he was four months old. SMA is a brutal, rare neuromuscular disorder that affects Colby's abilities to walk or even sit up, speak, swallow and most of all breathe. Colby requires complete assistance with all activities of daily living. However, his brain is not impacted by SMA. Colby is a bright, yet stubborn, young man who enjoys socializing with others. Recently we purchased a fixer-upper, as-is house. Over the last year, the house has gone through a complete transformation. It was gutted and redesigned to accommodate Colby's needs, including a roll-in shower, open floor plan, ramp to get into the house, whole house generator, wood laminate flooring and other amenities to improve Colby's quality of life. Donations from this benefit will help offset the nearly $50,000 in out-of-pocket costs needed to make the once rundown, old house into a beautiful, functional home for us.

Mike Armstrong will have you laughing so hard you'll be crying! He is a very kind and generous man who also happens to be hysterically funny! This is Mike's second fundraiser for us at the Moose, and we are so grateful to him for agreeing to help again. He is a local boy, raised in Louisville. He gets a lot of his material from his experiences as a cop and from raising 5 children. He is a repeat guest on the Bob and Tom Show, and he performs all over the country. We are very lucky and excited to have Mike participating in our fundraiser this month! Rolan Whitt is also a Louisville native and a comic national headliner. He plays rooms all over the country and draws some of the most enthusiastic crowds you’ll see. He is now based out of Sin City, Las Vegas. He has worked with some of the biggest names in the business, including work as a writer for the former host of The Tonight Show, Jay Leno. While stand-up is his forte, he is a versatile performer who also does improvisation and hypnosis, apart from his comedy.

Please join us on January 12. These comedians will help you beat the winter blues for sure. And who knows, you just might find that special item you didn't get for Christmas at the auction. Hope to see you then!

LIFTS, LIGHTS, LOVING THIS HOUSE

My absolute favorite trim carpenter/handyman got some major stuff done around here through the week. The living room TV and sound bar are now mounted above the fireplace. Beautiful. He also framed out and installed the side door to the garage. We still need the 2 big garage doors replaced, but at the moment there is too much stuff in the way! My mom and I have spent numerous days and hours working in the garage trying to get it cleaned out and better organized. We're pretty close. I think a couple more hours and it'll be ready for Cunningham Door to come and install the new doors. The biggie to get done is the deck and ramp. Yep, this project is still not done. I'm not sure what went wrong at the company that said they would donate the deck and ramp. First we were told it would be done mid-August/September. Then we were told the job would be done before we moved in mid-November. Well, it's still not done. Just not happening with this company I guess. I can't get mad though, when I think of all the materials and labor that were donated and did actually happen. As a matter of fact, we have another organization that has offered to do the deck and ramp. That's exciting news! Not getting my hopes too high, but it sounds like they want to get started soon. Hoping to meet with them here at the house on Monday to talk about it all, and we'll take it from there. Fingers crossed it actually happens this time!

The other biggie that did get done this past Wednesday - we got the ceiling lift system installed in Colby's room. Oh boy, oh boy, oh boy! It's wonderful!! Fantastic! Freakin' awesome! See pic below. It has made transferring Colby in and out of bed to the wheelchair and the shower sooooo much easier. Love it, absolutely love it! We made do at the apartment, but this house has opened new, easier ways for us to take care of Colby, and I'm so very grateful for that. It just gets better and better around here as our to-do list for the house gets smaller and smaller. Hoping to get all the biggies done by the end of the year.

Let me tell you what my sweet, yet sometimes rotten, child did. I got a text from his school nurse Friday saying Colby's heart rate was high. Like 140. That's waaaay too high. They put him on the changing table and let him rest. Tried to get him back up in his wheelchair. HR went up again to 120-130. Then the nurse text and said Colby was crying. So of course I'm thinking he's sick, maybe a headache or maybe working on a plug. Hard to know really. But I couldn't let me sweet boy at school with a high heart rate and crying. So, right in the middle of working on the garage, I left to pick up Colby and the nurse. The nurse said the moment he told Colby I was coming to pick them up, the tears stopped and his HR went down to normal. Are---you---kidding---me?! So basically Colby played all of us Friday with his fake high HR and fake crying. Of course he was fine the rest of the day. No problems whatsoever. We took him to Great Clips for a haircut, no problems. Gave him a shower, no problems. He is such a stinker sometimes! I didn't know whether to laugh at him or get mad. I just shook my head and went on.

We're watching Elf. Every line of that movie is my favorite line! “The best way to spread Christmas cheer is singing loud for all to hear.” “We elves try to stick to the four main food groups-candy, candy canes, candy corns and syrup.” “You're a cotton-headed ninnymuggins.” I could go on and on. I took Colby out around dusk for a walk to look at some Christmas lights in the neighborhood. We love where we live! We're so happy here. I know I've mentioned that a time or two, but this house is truly wonderful and a perfect fit for us.

Better get going. Colby is looking sleepy and still needs trach care and teeth brushed. And I want to watch the rest of the Iowa/Michigan State game. Hopefully tomorrow I can find some time to drag out some Christmas decorations. 

This lift system makes transferring Colby much safer and easier. It's the bees' knees!