MINI VACA ROCKED! READY TO RETURN!

Sweet boy out on the lake.

We had the best mini-vaca ever this past weekend! My BFF, Amy, Colby and I headed to Lake Barkley to visit my other BFF Kim and her hubbie Philip for a long weekend. We left as soon as Amy got off work on Thursday and we could get loaded up and on the road. Colby did really well on the 3-hour drive there and back. Basically we ate, drank, visited, took boat rides, played games, napped, went for drives and overall just had the best time! Kim, Philip and Kizmo (their morkie) have a beautiful home right on the lake. They spoiled us rotten – we never had to want for anything! Amy and Kim were great at helping me with Colby as much as they could. Philip helped out around the house a lot so Kim could visit with us. The weather was disgustingly hot, but hey, what you gonna do? We are already planning our next trip down there. Can't wait! Here are some pics of our fun-filled Barkleyfest vaca:

This was our view for the trip. Beautiful, peaceful Lake Barkley. Aaaaaah, heavenly. 

 

 

 

 

 

 

 

There was some intense Yahtzee!-ing and Trouble-ing going on between boat rides.

  

Took a drive to the Land Between the Lakes Elk and Bison Prairie. It was like we called ahead and said we were coming! Animals were out and feeding. Beautiful creatures.

Check out this beast! He was right outside the van. Just hanging out, on the side of the road, waiting for us to come along and show Colby. 

Group shot! Philip (captain), Colby (co-captain), and the 3 Amigos (me, Amy and Kimmie)

TUESDAY'S TALK

Sunday we did what I said we'd do. Got up at the buttcrack of dawn. Got me ready, got Colby ready. The nurse got here at 8am. We loaded Colby up and went and had breakfast with Dad/Grandpa at the Moose Lodge. My goal was to get there at 9:30 – we got there at 9:38. Not bad. The food was delicious as always. It's really neat what they do. On Mother's Day, the men make breakfast for the women. On Father's Day, the women make breakfast for the men. Then we delivered a couple of cards to other father-like menfolk in our lives. The rest of the day, not much. I've started watching the new season of OITNB. By myself, Colby isn't watching. He may be a teenager, but I don't think he's quite ready for “all that” just sayin'.

I'm not going to sugarcoat it, yesterday pretty much sucked. The house kept getting hotter and hotter. It was 85 miserable degrees in here. Awful. Colby's nurse looked like she was going to pass out at any minute. I was literally in tears it was so hot. I told you, I don't do heat. First phone call of the day was to the company that supposedly “fixed” the AC last week. I said, uh yeah, you didn't fix it. They came out about 2 hours later. They weren't here 5 minutes and said ok, it should work now. Seriously?! I don't know what they did. Don't care, because the air kicked on and immediately started cooling the house down. Thank goodness. But now I'm totally freaking out again. The thermostat is set for 73, but it's 75 in here. That's a big red flag to me that the air is going out again. OMG I'm so over it. I've got quotes from 3 different companies. So if I wake up in the morning and it's any hotter in here, screw it. I'm not messing with this old unit anymore. I'll just have to bit the bullet and get a new unit.

We were tucking in Colby last night. I looked up and said holy crap, where did all the water in Colby's fish tank go?! I guess a third of the water was gone from the tank. I about shit by pants. So, 10:30 at night the nurse and I are in there soaking up nasty, poopy fish water, trying not the get electrocuted. Figured out what happened, and oh yeah, I'm the biggest total freakin' dork on the planet. Nurse David helped me clean out Colby's tank this past Friday. He has 3 tanks and is really into that sort of stuff, so he was more than happy to help. Ok, actually he didn't “help” he did all the work. Then he told me, don't forget to change out the filter in a couple days. It's going to need it. Ummmmm, well, ummmmm, I forgot. The filter got clogged (what is it with clogged filters around here) and the water wasn't running through the pump properly. Hence, therefore, hitherto, water spilled out the top. I swear.

We did take Colby swimming today as promised. As usual, he loved it. Jabbered the whole way there. Started packing for our mini-vacation. We're going to have to get some extra storage for the van. Racks on top to hold a hardtop storage container, or a hitch to pull a small trailer, something. We're going to be absolutely crammed in there. But as I always say, for Sweet Boy, I shall prevail! My BFF Amy is going with us. I told her she can only take what she can pack in a shoe box. Haha. She thinks I'm kidding, wink-wink. Mentally ready to go. Physically I still have a buttload of packing and organizing to do. Oh, and laundry. Need to do some of that before we leave.

That's the update for today. I've been reprimanded recently for not blogging enough. Oh yeah, because I have so much extra time to do that! Just kidding. I totally have time. Getting ready to get kid tucked in for the night. Fingers crossed tank is full and fish are swimming, not floating! More soon.

THIS TOO SHALL PASS

Pop quiz! What's the one item we didn't replace/get new when we rehabbed the house? That would be the air conditioner unit because we were told we didn't need a new one. Well I'm here to tell you, I beg to differ. Wrong, wrong, WRONG! Our AC has been out since last Saturday. It was working, just wasn't working well/keeping up. But we could run it and and least cool the house down enough to still be comfortable. Started getting quotes from companies for a new unit. Then one company says oh, you don't need a new unit. You just need freon, only $195 for the service call and to fix the AC. Fantastic, I'm thinking, since a new AC unit will run anywhere between $3500-$6100. Well guess what? They were also wrong, wrong, WRONG! Now the AC isn't working at all. It's was 82 lovely degrees in the house earlier. We do have 3 nice ceiling fans so we're not totally miserable just yet. If we can survive one more day, first thing Monday morning I need to call one more company and get a quote. From there I'll decide the best unit with the best price and warranty and get this taken care of! I'm not complaining, just telling the story of what's been going on. I know this is part of home ownership. Shit happens. Actually I'm handling this all very well. Anyone who knows me knows, I don't do heat. Especially miserable, stuffy, humid heat. And I worry about Colby's respiratory status when it's this stinking hot. But he's handling it all very well. There is a ceiling fan right above his bed, and basically he's been naked (brief only) for nearly a week now. Diaper, AFO's and hand splits, nothing else on him, it's quite the fashion statement.

I haven't done anything fun with Colby since school has been out. World's worst mom, typing this blog right now. He hasn't been swimming for the last 3 weeks for one reason or another. Come heck or high water, we're going this Tuesday. I keep saying we're going to go see the new Ninja Turtles movie. Haven't done that either. Kicking around the idea of taking him to Chicago for his birthday to see the SpongeBob musical. But there are many factors that go into that, so that's pending/doubtful. Just kicking around the idea and have asked my travel agent friend to see if it's even a possibility for us. We're going to the Moose in the morning to have breakfast with my dad for Father's Day. Since Colby doesn't eat, I doubt if that's much fun for him. But he'll be getting out of the house for a bit, so that's something, right? Note to self, start doing fun things with Sweet Boy! Summer is ticking by! We are going to Lake Barkley to see friends soon. That will be so much fun, so I'm not a total loser mom after all maybe.

Last night I got out for a while. Had a super good time. Went to Lexington to watch the St. X Tigers baseball semi-state game. Just so happens my SMA BFF lives in Lexington. She came to the game. We headed out in the 5^th inning so we could partake in some local food and beverage. She's such a hoot! My face always hurts from laughing so much after hanging out with her. We get out in public, away from our kiddos, have adult conversation and hardly know how to control ourselves. And for the record, St X won last night. Played in the state championship game tonight and won that also! Way to go St X Tigers baseball!

Today I worked half a day. Then drove over to my mom's to take her back her car and pick up the van. Oh yeah, having issues with the van, too. One day it was fine. The next day I started it and just started laughing. It was sooooo loud. Sounded like a total hooptie mobile. No way I was driving that to Lexington 75 miles away. My mommy was nice enough to let me borrow her car. Dad looked at the van today. Sure enough, the muffler has come lose from the tailpipe. For the love of all that is good and holy, what's next?! I shouldn't even ask, should I? Dad wired it up the best he could. Van is getting looked at Monday morning. Have to get that hooptie fixed before we head out for the lake.

That's all I know. Sucks not having air conditioning for sure. If it gets too unbearable tomorrow, we'll pack up and go see that movie finally. Nothing I can do about it except get it fixed. Super duper. Good night, all.

I KNOW YOU'RE JONESING FOR AN UPDATE - here it is!

Hello blog readers. About time for an Amy and Colby update, don't you think? Sorry it's been a while since I've been in touch, but hey, life happens.

Colby's last day of school was May 25^th. Should have been May 26^th, but he had an ortho surgeon appt on the 26^th at Cincy Children's on the 26^th. I'm sure it didn't bother Colby one single bit to get out of school a day early. Believe it or not, this child will be in high school next year! Did you read me right, high school! Oh how time flies. Anyways, his ortho appt went fine. Took longer to get his x-rays done than to see the surgeon. Colby's spinal rod fusion is holding up great says Dr. Sturm. The 2 rods and 9 screws he has in his back are exactly where they should be, yay!

We had a cookout on Memorial Day. Just because we could! I loved it! Had 9 people over. I hope everyone had a good time. I know I did. Dad was in charge of frying fish (blue gill and crappie, the good stuff) and hush puppies. I put my friend Jeff on the grill doing burgers and chicken. I did side dishes and dessert. My friend Joni made her famous, delicious mac and cheese. I absolutely loved hosting for a change. Thinking of having a July 4^th/Colby's birthday combo cookout maybe. Who knows?! Maybe we'll have both a July 4^th cookout and a cookout for kid's bday. This house has changed our lives so much for the better. How wonderful that I can keep Colby at home with all his equipment and comforts AND we can be social and have people over. So yes, we still absolutely love this house, love this neighborhood and are loving life for the most part.

So let's talk nursing. One of the most stressful, worrisome topics of our lives. I've had to make some really hard decisions about nursing. Basically I told the nursing agency, either you work here full time (or very close) or you don't work here. No more chopped up scheduling with this nurse working these 2 days, this nurse working 2 shifts per week, etc. We need consistency in scheduling and continuity of care for Colby. I was telling my dad, you won't believe this, but every shift in June is scheduled and should be covered. It's a miracle! Providing no one gets sick, quits, etc. Yep, you guessed it. One nurse had vacation scheduled and the nursing agency forgot when doing the schedule. But we got her shifts covered. Then BOOM, you ain't gonna believe this shit, one of Colby's new nurses was diagnosed with mono. Yep, freakin' mono. Unbelievable - I just don't even know what to say. She got cleared from her doctor to return to work, but I said nope, and gave it another week. She started here last Tuesday. She has great skills and is very personable, so I hope she works out here. I had her wear a mask when in Colby's room, and she was very good about wearing gloves, washing and sanitizing her hands. We'll see I suppose. Also looking for a nurse to work Mon-Fri, 8a to 4p, who can work for both nursing agencies and go to school with Colby. Nursing BS never ends. It really shouldn't be this dang complicated, but for some reason it is. Makes Mama sad.

Colby had Cincy appts this past Wed and Thurs. We left 10:30am Wed and didn't get home until 8pm Thurs. We were all exhausted! Wed Colby had some testing, an easy day really. EKG and Echo, then down to Pulmonary so they could test his vent settings. Spent the night at a local hotel. Being the spacehead that I am, forgot very important pieces to Colby's IPV machine at home. And the nightmare began! Darrell and Nancy had to come here to the house, get the hoses and adapter we needed. They drove up to Carrollton. My poor daddy drove down to Carrollton and met them to get the stuff so we would have it. I absolutely hate that happened! But what's done is done. Colby's first appt on Thurs was at 11:30. We got ready, packed up the van and checked out of the hotel at 10:30. Wow, I thought, we'll actually get to a Cincy appt a few minutes early. Think again! There was a car on fire on the exit we needed. Firetrucks and police cars everywhere, the exit completely closed of course. Ok then, let's reroute through downtown Cincinnati. We did get to his appt on time, which was with the Comprehensive Neuromuscular Clinic. Basically, we stay put in a room, and all the doctors come to us. It's genius! We saw PT, Nutrition, Rehab, Pulmonary, Neurology, Genetics and Cardiology. Very, very busy day. My brain was starting to fry around 2pm. The next hiccup we had was my dad thought he had lost/misplaced the only set of keys we had with us. No van keys, no house keys, no keys. I was trying to talk to doctors, help Dad look for keys and retrace his steps. A complete nightmare for about an hour and a half. He had security guards helping him look in the cafeteria, going to lost and found, etc. We finally broke down and called Pop-a-Lock. Then voila, I found the keys in the backpack. Jesus Lord, Mary, Joseph and drunk Noah, thank God we found those keys! Ok, so back to Colby. Overall he got all good reports from the doctors. Just a few tweaks to his vent settings. Colby needs a left elbow brace/immobilizer to help with contracture. Things like that. For the most part, the doctors had nothing but good things to say about how Colby looked, sounded, his overall health and such. What a relief! Next Cincy appt at the end of July for a DEXA scan and sleep study. Not looking forward to that at all. But, we gotta do what we gotta do. Bleh.

So that's what's up. Wanting to get focused and do some fun stuff with Colby. Go bowling, the movies. We're going on a mini-vaca this month to my friend's lake house. Can't wait! As much as we love this house, a change of scenery, especially on a lake with their brand new boat, will be really nice. I should go ahead and start packing now! More again soon, I hope. Toodles for now.

UNEVENTFUL AND ORDINARY - Just like we like it

I got nothing! No pre, during, or post infusion labs or news to report. No running around like cra-cra with big party preparations going on around here. No trips to Cincinnati to stress or blog about. Could it be our lives might actually be settling down a bit? Are we becoming, dare I say, back to some sense of our normalcy? Oh wouldn't that be nice.

We have a new nurse shadowing tonight. (Shoot me. Shoot me now.) It never ends you know. We have two nurses that have recently wanted to cut back their hours, hence the need for another nurse. So I decided to sneak off upstairs while Colby's night nurse trains/shadows the new nurse. Colby certainly doesn't need 3 of us in his room. I can hear him. He doesn't seem at all thrilled to have an extra person in his room. Sorry kid, it has to be done. I'll go back down when I'm done with this. Chat it up with the new nurse. See if I can get a feel for her experience, sanity level, ability to use common sense and work ethic. Then Colby and I will watch Jeopardy! He loves it. NOT! But I figure if he's not going to give school any effort at all, maybe he can learn something this way. Then we'll give Colby a bath. New nurse is shadowing again tomorrow night. Luckily I have plans and won't be home.

It's so nice to finally have a regular schedule around here this week. Colby went to school yesterday. This will be the first time he has gone to school all 4 days since I don't know when. (Remember he doesn't go on Tuesdays. Swim day.) I stayed home and did some major house cleaning and phone call making. Today I ran errands while the nurse got Colby ready for the day. When I got back I mowed the grass, quickly. Very quickly. Didn't know what time the rain was coming and had to get 'er done. Then we loaded up kid and took him swimming. He jabbered loudly the whole way there, so I know he was really excited to go. That's it! Nice and boring and ordinary for us and uneventful. Aaaaaah. Love it.

Okay, time to check out this new nurse. I'll keep you posted on whether or not she's a keeper. Please let her be a keeper. Pretty please?!

COLBY IS THE MLB MASTER

Our trip to Cincinnati Children's for Colby's MLB went just fine. It was my favorite word – uneventful. The whole adventure was over in 32 hours. Left at 11am Thursday, got home Friday night around 7pm. Actually everything went as smoothly as it could. For some reason, it seemed to take me forever to get us ready to leave Thursday morning. Just couldn't get my duckies all in a row. They had a bed available and waiting for Colby. We got settled into the TCC. Stayed really busy with admitting; going over meds, Colby's schedule, the procedure; meeting with nurse practitioners and doctors; actually keeping Colby's schedule halfway normal. We had one of our all-time favorite nurses, Shauna. She has been on the TCC for years now, and she's just really good at her job. I didn't have to worry about Colby as much with her taking care of him (insert big smiley face.) We even had a visitor! One of Colby's St. X buddies now goes to college at Xavier here in Cincy. I told him we were at Cincy Children's and he came to see us. So nice of him. That boy is going to go far. While other kids were doing beer bongs and getting stupid in Florida over spring break, he went to Mississippi to be a counselor at a special needs camp. Good for him! He's definitely going to make a difference in this world (he already does.) One day we'll be able to say, we knew him when he was just a goofy high schooler!

We had a super-weird respiratory therapist Friday night. I'm sorry, the man was just strange. It makes me very uncomfortable when, after meeting someone new, he/she immediately start telling me his/her life story. TMI, dude! He started telling me where he grew up, all the states and hospitals he was worked, his dad passed away 7 years ago, his grandkids, and on, and on. I'd give anything if some people had a freakin' mute button. Anybody else find that odd? But I was nice. Or as nice as I can get when I'm tired, stressed and somebody starts really getting on my nerves. I was so glad when he finally left our room! Colby was started on his TPN at midnight. Leave it to Colby to make a liar out of me! He had a super great night of sleep. His HR even dropped down below 70 a couple of times. Shaking my head. I was telling anybody that would listen that he's been having sleeping problems. More on that later. I think I've figured out something else about our home vents.

Let me tell you something – my sweet boy is amazing! He's such a trooper, such a go with the flow kind of kid. He did have some increased blood pressures while we were at the TCC, but hey, I probably did too! We were in surgery holding and my dad came over to say bye to Colby. He asked if they already gave Colby some med like Versed to calm him down. I started laughing and said uh, no, Colby is just that relaxed right now. Not me. I was a jumble of nerves. I don't care how “short” or “routine” his procedure was, when they take him back to surgery and his care of completely out of my hands, it's nerve-wracking. I tried not to let it show. Don't know how good of a job I did. The pulmonologist said Colby's airway looked “pristine.” Did you hear me?! Pristine! Take that, SMA! Airways looked good, trach stoma looked good. No need to make any changes in the size of Colby's trach. Easy peasy and so glad it's done for another couple of years.

Today was spent resting and unpacking from Cincy. The nurse and I also gave Colby a bath to get all the hospitalness off him. And yes, I watched Purple Rain every time I saw it on TV today. Colby has learned more about Prince in the last 4 days than he probably ever needed to know. The nurse today was trying to tell me stuff about Prince. That's extremely funny. I kept finishing his sentences for him or correcting him. Don't even go there, dude. I'm a huge Prince fan and I guarantee you're not going to tell me anything about him I don't already know. Just sayin'.

Time for bed. Even though our Cincinnati trip went well, it's always stressful. I woke up with a migraine and it took me most of the day to shake it. All better now, though. Nitey nite, blog readers.

ONE APPT DOWN THIS WEEK, ONE TO GO

Our trip to see Endocrinology at Cincinnati Children's yesterday was, in fact, uneventful. Yay! We got in a little traffic going up. Got caught in some post-wreck traffic right before the bridge coming out of Cincy. It looked like a really bad wreck. Hope everyone was ok. Overall everything went fine. Left at 11AM and got home around 7PM. Like I said earlier, that's a long damn day for one stinking appointment. Colby is such a trooper! He never whined or cried once. Just went with the flow like the sweet boy he is. Hopefully we can spread out the next endocrinology appt to a year instead of 6 months. The endocrinologist and I discussed if the infusions were working and should Colby stay on them. The answer is yes. His bone density has improved slightly over the years. We'll take any improvement we can get! Colby is scheduled to have a DEXA scan in July and his next infusion will be in October, so we're done with Endocrinology for a while.

So Colby totally doesn't want me sharing this, I'm sure, but he has been very constipated lately. Non-pooping is common in SMA kiddos. We include prune juice in Colby's diet daily and this usually helps him go just fine. We noticed he was having some trouble, i.e. pitiful little excuses for poops. Started giving him MiraLax and extra prune juice, but those didn't helped. Moved to the next help-Colby-go step, suppositories. Gave him 3 suppositories over 3 days, that didn't work either. I told him yesterday, I'm sorry buddy, but if you don't go today we're going to have to stop on the way home and I'll get you an enema for tonight. I think that literally scared the poop out of him! He went once while we were at Cincy. Had another extra-extra large BM last night, and another good sized one today. Constipation problem solved. Guess next time I'll make mention of an enema much sooner!

While Colby was at school today I got the yard work done. I have a little experience with mowing but none with weedeating. Honestly I'd never even held a weedeater before until my dad gave me one at Easter. Most parents give their child a chocolate bunny, but I got a weedeater. Hey, it's a great present if you ask me. Runs on lithium batteries because as we all know, I would surely cut right through a cord if I had that kind of weedeater. My novice skills were evident today when I chopped right through my peony in the back yard. Woopsie! Hate when that happens!

We just got done giving stinky Colby a bath. Usually that's a Tuesday chore, but we got home too late last night. Next I need to do some packing for our Cincinnati Children's appt. Time to print out the don't-leave-home-without-it list and get busy. We drive up tomorrow. Fingers crossed no traffic problems tomorrow. Check into TCC, stay overnight. Then Colby is scheduled for an MLB procedure at 11AM on Friday. That's seems late to me, so who knows what time we'll get home Friday afternoon/evening. Colby's dad comes to visit him on Wednesday nights. We're not exactly on speaking terms, so I'll make like a log and split while he's here. Need to take back some rugs I didn't use and return Crock Pots I borrowed for open house. Saturday I'm giving myself permission to have a big, fat, do-nothing day! After this week, I think I'm going to need it! Have to DVR “60 Days In” in case they don't have that channel at the hospital. Can't miss it. I'm mesmerized by what might happen next. It's such a good show!

Wrapping up for now. Just wanted to let everyone know how Colby's Endo appt went. Once we get through this scope procedure, we don't have to be back at Cincy until May 26. Hallelujah. I'll blog when there's more to blog about, like how our next Cincinnati Children's adventure goes.