Friday, March 30, 2012

I'M AMONGST THE LIVING

I was soooo freakin tired yesterday, it was honestly hard to function. Today is much better! I went over to the Ronald McDonald House last night around 11:00 and Mom stayed here with Colby. I felt really guilty leaving Colby. I've never spent a night away from him when he's in the hosp. Even though I was only a block away, it was weird. I was too tired to argue. I've had a solid night's sleep and I'm rarin' to go. Or as rarin' as I'm going to get.

Colby's chest xray looks unchanged (sigh). Actually I think it's a teeny bit better but not by much. A far as Colby's treatment plan, no big changes today, pretty much more of the same. We have a new attending dr, they change on Fridays. This attending knows quite a bit about SMA so thank goodness for that. Colby feels absolutely crappy! Even with all the trauma he went through last hospital stay, he still seems to feel worse having the flu. He is just miserable and I hate it, hate it, hate it. He hasn't had any fever for a couple of days. He had a little trouble with his 11:30 cough treatment last night but since then it has been smooth sailing.

Not much else to report. Mom is going over to Ron McD House to get her key, checked in, etc. She needs a nap so I hope she stays over there a while. I'll post more later.

Thursday, March 29, 2012

BRAVEST KID I KNOW

Colby is such an amazing kid. I'm blown away by his willingness to just keep fighting the fight. I know he's trying everything in his power to get better. So incredibly proud to be his mama.

Overall Colby is doing better. Say it takes, on the average, for someone to get over the flu in 5 to 7 days. For Colby it will take much longer b/c he also has to deal with the pneumonia and effusion. Yesterday we had decided if Colby's xray wasn't any better he would have a broncoscopy done. He must have heard us haha, because this morning his xray finally showed a little improvement. We decided to not do the bronc today, which suited me just fine. The less procedures we do to Colby and the more he can kick this on his own, the better off it will be. Even though his xray was better, I could tell something was wrong with him this morning. He seemed to be uncomfortable and his heart rate was way too high, 130 to 140. So I had some ideas and was determined to hold my ground and fight with the docs to get these changes made. The attending dr came in, I expressed my wants and concerns, and viola, she agreed with me. Really? I was all geared up to throw a hissy fit, but I'll save that energy for later I suppose.

They had Colby in a mode on the vent that would give him a set tidal volume, which they had set too low to begin with, and Colby would determine the pressure rates. It made no sense to me why he was on this mode, as we didn't use it last time he was in the hospital. So they agreed to switch the mode. I also wanted to cut back on the Lasix, they agreed, and it's down to 2x daily. I also wanted pulmozyme used from 1 time daily to 2 times daily. SMA FAMILIES: if a doc or hospital ever tries to tell you pulmozyme is for CF patients only, tell them they are full of shit! It doesn't work on every SMA kid but does some, so don't be afraid to try it. This is the 1st time Colby has used it and I do think it's helping. And just to be on the safe side I requested cultures be taken so if Colby has any nasty bugs growing we can start treating them sooner than later.

We're also trying to get Colby's surgeries scheduled, since he is currently intubated. I think some people are confused. Before Colby got sick and admitted to Cincy, I was in the process of scheduling surgeries for him to have over spring break. He needs 7 baby teeth pulled and I figured since he would be under, why not go ahead and have the ascended testicles surgery done. Now, after this hospital stay, I have also decided to have a port placed for Colby. This will allow for IV access whenever we need it. We got "lucky" this tme and have been able to stay a step ahead of his illness (sort of) but that is not always the case. After 2 failed PICC line attempts, I was like yep, something has to change. Oh goodie, one more thing for me to learn.

That's it for today. I look like crap. I feel like crap. I'm tired, grumpy, sore from sleeping on a horrible excuse of a bed, tired, didn't get a shower today, worried, tired, frazzled and oh yeah, tired. After 9 years of coming here, we finally got smart and we're giving the Ronald McDonald House a try. We now have a room there and as long as Colby is doing this well, I'm going to go over tonight and give it a try. My mommy brought me roast, potatoes and carrot for supper. I'm very excited about that. Real food! If this update has a bunch of typos in it, sorry. I'm typing on Colby's tiny iPad keyboard and I'm too lazy to proofread. At least I can admit it! Bye for now.

Tuesday, March 27, 2012

TUESDAY'S TALK

You can beam me up. Better watch out for flying polka dot pigs. They're building snowmen in Miami. Why would I say these crazy things? Because Colby Michael doesn't want to watch Spongebob Squarepants!!! I have NEVER seen this kid feel so badly that he didn't want his Bikini Bottom friends around. But right now he doesn't want it. He has slept and slept again today. You can tell he is SO over this crap all ready.

If you haven't heard, Colby has type A flu. Of all the things he could have tested positive for, I wasn't expecting that. So his underlying SMA leads to a weak respiratory system, which leads to him getting the flu. Getting the flu immediately settled in his lungs, leading to pneumonia. His lungs filling up with pneumonia brought on the effusion. Make sense? Basically, it's like this: SMA sucks and any little illness Colby gets goes straight to his lungs and causes chaos. Clinically he is doing better. Still has a little fever popping up but overall it is improving. He's down from 3 antibiotics to 2. We able to make some changes to his vent (for the better b/c his lungs are slightly improved). Continuing the Lasix to dry up the lung effusion. But as I said earlier, I've never seen him act this puny. He is just flat out wore out, which the docs say is perfectly normal when you have the flu. He's sleeping more than usual and when he is awake, he doesn't want to be touched, bothered or talked to as far as that goes. We're keeping it quiet around here so he can get lots of rest.

I'm a little stir crazy. My mom was here for a couple days, now dad is here for a couple. My BFF sent up her Kindle, along with tons of snacks. Thanks, Amy! Chomping on some Sun Chips right now. Saving the Ritz crackers until later haha. The nurse and I (yes it took both of us) just pulled out a slimy string of snot from Colby's nose. TMI I know but remember, that's what we SMA peeps talk about, along with bowel movements.

Need to get the iPad charged so I'll stop for now. More later.

Monday, March 26, 2012

So, Mr. Colby is in Cincinnati Children's Hospital, AGAIN, and had to be intubated, AGAIN. Let me start by saying shit, shit, shit to that. How did we get to this point? Not sure if I should start with the current and work backward or start from Friday and work my way forward. Yeah, that's probably best.

Obviously Colby started doing worse by late afternoon Friday. I wanted to pitch him in the van and take him straight to Cincy. The ex and Colby's pulmonologist talked me into taking him to Kosair first to make sure he was stable, get IV access and get an ambulance ride to Cincy. While I wasn't thrilled with the idea, that's what we did, and it all worked out for the best I suppose. (You know I'm not saying they were right and I was wrong, oh heck no). The ex, his wife, and I got stuff together and took Colby to Kosair ER. Got an IV in Colby, then waited what seemed to be an eternity for Kosair's transport team. We finally got to Cincy at about 10:00 Friday night. Just in time to watch the IU/UK game (so sad for my Hoosiers).

By Saturday morning Colby was worse (dammit). We tried different bi-pap machines, different masks, started Colby on antibiotics, but he was getting worse, not better. We decided to go ahead and intubate him. I was so discouraged. However, he was abolutely heading in that direction, so we intubated him in a controlled environment instead of waiting for a life/death situation. Had enough of those thank you very much.

Colby had 2 IVs, one in each hand. Knowing Colby's history of blowing IVs, being a "hard stick", and needing stronger IV access, we decided to put in a PICC line. That was an epic fail! Again, I was so discouraged. They came bedside on Saturday, tried both arms and could NOT get the PICC in. Someone else tried again Sunday morning, didn't work. That's how uncooperative his little veins can be. So, yesterday afternoon they put in an IJ (central line through the jugular). After this procedure Colby decompensated a bit. They took an x-ray to look at the IJ placement and his lung looked like a freakin snow storm. For those not familiar with reading chest xrays, you want to see black on xrays, which is air, opposed to white, which is fluid, infection, gunk, etc.

He had a fairly rough night. High heart rate here and there. Fever up and down. Oxygen levels dipping to 87, even on the vent. Today in rounds we decided to change his antibiotics. Discontinued the original 2 and now he is on 3 different ones. Also started some Lasix. I'm not at all happy about this, but we have to do something to clear up the effusion in his lungs and this is the least invasive treatment course. Right now Colby is resting comfortably, sleeping actually. His numbers are a beautiful 96 oxygen and 107 heart rate. He has slept and slept this hospital stay, actually to the point it has me concerned. I know he's been through a lot, but he's just not much of a sleeper, even when sick. He seemed uncomfortable so I was having them give him a dose of Ativan here and there. He hasn't had any since last night before bed, though, and here he is still snoozing away.

That's about it for now. I'll update more later. Guess I should nap while Colby is sleeping, too. Thanks to everyone for the continued prayers and get well wishes. I know how much you love sweet Colby boy (and me too I suppose) :-)

Friday, March 23, 2012

WELL POO-POO ON THIS

Remember how I said things were uneventful around here, well not now! Had to keep Colby home from school yesterday. He has some major head congestion. How did this happen, he was fine 2 days ago?! You can hear the rattling in his nose/throat from 2 feet away. Keeping him on his bi-pap continuously. Doing cough treatments every 3 hours, even through the night. So far his secretions have stayed clear, no yucky green or yellowish nastiness. Yesterday he looked horrible through his eyes, but today he seems to act a little better. I'm trying to get him to take a nap right now. Trying but failing. TVs, radios and lights are all off. I'm in here in the living room and Colby is back there in his room. I just peeked in on him, yep, wide awake. He should be exhausted, first of all because he's sick and second of all I woke him up every 3 hours to cough him last night. It's a perfect day for a nap - dark, pouring down rain. Come on Colby, get with the program. Colby's pulmonologist thinks what he has is viral and doesn't want to put him on an antibiotic just yet. I don't know if I agree with this or not, but I'm willing to give it a shot for a couple of days. If he's no better by this time tomorrow, I'm going to insist putting Colby on an antibiotic.

I was supposed to work at the hospital today, but obviously that didn't happen. When I got Colby up for his 5:30 a.m. treatment, it did not go well. I was thinking oh crap, this kid will be in the hospital before the end of the day. Finally got him stabilized, but just couldn't leave him today. His 8:30 a.m. cough treatment went much better. You know what else I've done today besides take care of Colby? Absolutely nothing. Among his shaky vest, nebulizer and cough treatment schedule; feeding and giving extra free water schedule; giving him extra lovins and calling Cincy, I haven't got a darn thing done. Except this blogging! Haven't even unpacked the dishwasher or thrown in a load of laundry. Those are the simplest of chores. But then I'm like, oh well, who gives a crap, it'll be here waiting on me. I'll get to it when I get to it. I've made arrangements with Colby's nurse, so hopefully I'll get to go to work tomorrow and make up for the time I lost today.

Of course it's pouring down rain and Colby doesn't feel well on a day I've made plans. Isn't that the way the cookie crumbles, haha. Wine Night is tonight and I'm planning on going. I know what you're thinking. If Colby is so sick, why are you leaving him? Okay, I can answer that. The nurse staying with Colby tonight has been with us for over 2 years now. She's fully capable of taking care of him. Plus I'm planning on coming home early. Plus I'm going to plan it where she won't have to do much with Colby's care. I'll do a cough treatment right before I leave and when I get home. He'll be on his bi-pap most of the time I'm gone. Am I nervous about leaving him? Yes. Do I think he'll be okay while I'm gone? Yes. Do I think if he has issues the nurse can handle it? Yes. I would never, ever, ever do anything to put him in any kind of danger. Any other questions you may have? Didn't think so.

Well, it's 2:00. Time to feed my no-nap kid. Then at 3:00 another cough treatment. Good times, gooooood times. I'll update soon.

p.s. - GO IU FIGHT FIGHT FIGHT.

Wednesday, March 21, 2012

WEDNESDAY'S WORDS

Well, I'm having a hard time getting this blog started today. It's been a good and bad kind of day. I feel like I have nothing to say and also want to just type and type and type, let it all loose. Guess none of this makes any sense, so let's just start with the facts.

So far it has been a very good week. It has been our favorite word, UNEVENTFUL! All that craziness with Colby's high heart rate and the choking/plugging episodes seem to be long behind us, for now anyways. He went to school Monday and Tuesday with no problems. Yesterday we had his IEP meeting and get this, even Colby's dad went! Yep, you read my words. I asked him if he wanted to go and he said yeah. Then I thought oh crap, do I really even want him to go?! Never know what's going to fly out of his mouth. But it was fine. I guess I just wanted him to get a better feel of the things that have to be done for Colby besides taking care of his day-to-day medical stuff. The main goal for Colby's IEP is to use his eye gaze more while at school. I'm hoping the more he uses it, the more importance he will put in it, therefore using it more as his "voice". Colby's speech therapist, Amber, deserves a big, fat THANK YOU VERY MUCH. First for seeing that Colby is smart enough to use an eye gaze communication system, and second for her learning to work it and program what Colby needs on it. She has pretty darn high expectations for Colby and expects him to work hard while in school. Sometimes I don't think he really knows how to take that, but I love it.

Dad and I took Colby to his eye dr appointment today. Luckily Cincy Children's has some offices in northern Kentucky, too. That cuts about 16 to 18 miles off our trip, one way, which is super duper. His vision prescription has changed a little. The ophthalmologist had a very interesting suggestion, putting Colby in contacts. When he first said it, I thought he was nuttier than a fruitcake, but in reality it makes good sense. As you know if you wear glasses, you can only see through what's inside the frames. Contacts would help open up Colby's field of vision. I'm just milling the idea around right now, but leaning toward at least trying it. What could it hurt? I think we would know fairly quickly if Colby would tolerate the contacts. And hey, I already have 62 steps in getting Colby up for the day. Might as well make it 63, right?

Trying to schedule surgeries for Colby also. He's going to for sure have the oral surgery to remove the 7 stubborn baby teeth that are still hanging around, literally. Wonder if we could just relocate one of those teeth up to where he lost the one during his last hospital stay? Okay, I don't think it exactly works that way, but it would be nice to have that tooth back in his head. If it's possible to coordinate, he will also have the surgery to correct his ascended testicles. I'm sure Colby is just thrilled I'm sharing his testicles with the whole worldwide web, but hey kid, it is what it is. Your jewels needs to be relocated. However, I don't consider the 2nd surgery a "have to do" kind of thing. So he'll have it only if it can be coordinated with the oral surgery. Trying to get this scheduled for Colby's spring break, which is just a couple weeks away.

I guess I'm feeling a little defeated today. I suppose that's the word I'm looking for. Please don't take this as a pity party, but I'm reminded all too often at just how badly SMA sucks. I shouldn't be complaining, Colby is doing great right now. It's just that with SMA, it's always something. If he's doing okay with respiratory, then something else needs to be addressed. If he's okay physically, then new equipment or supplies need to be ordered, etc. SMA is all encompassing, this affects that, that affects this. I mean really, I should be planning us a fun family vacation for spring break, not surgery for Colby. It's bullshit. Okay, wow, this is starting to sound like a pity party so I'll just stop. I think you get the gist of what I'm trying to say.

The bottom line is, I hate SMA more than you can imagine, but I love my sweet Colby boy so very much. I don't worry about the things he can't do. Instead, I focus on all he has accomplished over the years. He's so freakin' cute and has such a sense of humor. Every day with him is a blessing. And please know I never lose sight of that. Time to get him fed, give him his meds, and then off to bed. School day tomorrow!

Monday, March 19, 2012

OUR PERFECTLY "NORMAL" WEEKEND

We had a perfectly lovely weekend, thank you very much. Perfect weather. Got Colby outside both days and let him drive his power chair around the parking lot. He did a darn good job. He actually had some intent and purpose to his driving, for the most part, steering AWAY from parked vehicles. That's a nice change haha. I got really brave, or really stupid depending on how you look at it. Colby and I took off to TJ Maxx for an hour or so. Trust me, he's not much of a shopper. The last time I took him shopping it was a complete, scary disaster. Not this time! We only stayed for a little over an hour and I had his bi-pap, suction and oxygen all right there with us. No problems. He also worked with his eye gaze both Saturday and Sunday. He's so fun to watch. He goes to the same things over and over. Like I mentioned before, he keeps going to this one icon that says "yum!" Now, I have no idea why he's doing this, he doesn't eat by mouth for crap's sake. I finally said Colby, stop saying that all the time, you goofball. The very next thing he found and said was "sorry". I swear, that kid cracks me up every day. Or he'll say something off the wall, then he'll find the "just kidding" button and say that. He definitely has a silly, comical kind of personality. Hmmm, where do you suppose he got that?

When Colby's dad was here with him Sunday, I went out shopping for a bit. Trying to get my bedroom redecorated. I've rearranged my furniture in there twice in the last 2 months. I kept the comforter set I had and bought new pictures, lamps and a small nightstand. Also bought a dresser but it's going back. Don't like it in there at all. As soon as my interior decorator (aka BFF Joni) comes over and gives the thumbs up or thumbs down, I'll get everything out and on the walls. I'm pretty sure some of the stuff I bought will get taken back. I have many talents, decorating simply isn't one of them.

Colby's IEP meeting is tomorrow. Oh boy, those can turn into marathons sometimes. Actually I'm thinking it will go okay. I know they had a pre-meeting to make sure everyone working with Colby at his school is "on the same page". As long as everyone agrees that my kid is a freakin' genius, I see no problems whatsoever. Know what I mean, Vern?

That's about it I suppose. Sad to hear Peyton Manning is moving on to another team. I will always think of him as an Indy Colt. It will be very hard to see him wear another team's uniform. Also, I'm very worried about him getting hurt again. Why doesn't he just retire from playing?! He would make an awesome offensive coordinator, or even an announcer. But that's just my two cents worth, and yeah, I know that's exactly what it's worth, a whole two cents.

I've exercised 3 days in a row, and trust me, I'm feeling it. Being out of shape sucks. So when I get on the scale in the morning, I'll be skinny again, right?

Now you know I can't end today's update without saying GO IU, FIGHT FIGHT FIGHT!! So, so proud of my Hoosiers. I'm scared to death of them playing UK again, but I'll be cheering them on no matter what! March Madness, you just never know what's going to happen.

I still need to get the dishwasher loaded, I better end for tonight. Plus I'm starting to get a bad case of the yawns, so Adios Amigos.

Saturday, March 17, 2012

THIS WEEK'S UPDATE - YOU KNOW YOU WANT IT

Good morning world! I've been meaning to update for the last 3 days, it just hasn't happened. So before I do anything else this morning, the dishes, get Colby up, check the basketball scores, etc. I shall blog. I've got my coffee deliciousness sitting here and CMT videos on the TV, so let's get to it.

Monday was a busy day. Got my taxes done, or I should say my friend Kim came over and did my taxes for me. Thanks Kimmie! Colby had PT and there are several issues in that area we're working on - new hospital bed, new bath chair (his legs literally hang off his old one 4 inches or so), new braces (neck, back, ankle and wrist), modifications to his power chair. Dennis the wheelchair guy came and adjusted Colby's power chair to accommodate for Colby's recent growth. Colby has grown so much, this recent adjustment is the last thing to do. Next step, order a new wheelchair. So in the next few months I'll need to decide if we're going to stick with a power chair or go back to a manual one. Decisions, decisions. Then came the fun part, I had dinner with an SMA mommy friend. We live about an hour apart, so we met halfway. She brought a friend along, another Amy! And yes, of course she was super cool and sweet, as we know most Amys are. We just talked and talked, and laughed and laughed. I hope they had as much fun as I did. Can't wait to get together again. I think we're going to try and take the kiddos somewhere as soon as the weather is warm enough and schedules can be coordinated (and March Madness is over).

Wednesday I worked at the hospital, and I'll be a monkey's butt, I broke the overwrap machine again. Okay, didn't break it per se, but by the time I was done with it, it wasn't working. Some day I'll post a pic of this beast, you'll see what I mean. I'm not exactly a mechanically-inclined individual, which has been all too obvious since the day I started working there. Once I finally got the bags to run through, then the printer ribbon wouldn't advance. Then the printer ribbon broke. Well shit. I spent 15 minutes screwing with that thing. I talked to my boss that night and she had it figured out without even having to see it. There's a little button you have to reset any time something on the machine goes wrong. I forgot about the little button. She asked, "Didn't I tell you that last time you couldn't fix it?" Well, ummm, maybe. Perhaps I should update my notes for working that job.

Thursday we took Colby to Cincinnati for appointments. Dentist was first on the list. I was a nervous wreck. I had been taking Colby to a dentist here in town and the last few times were complete nightmares. Colby would cry and cry. I had to leave oxygen on him the whole time, and his heart rate would stay around 160. That dental hygienist would just scrape and scrape on Colby's teeth. With the appointment in Cincy, there's good news and bad news. I told the dental hygienist all about Colby's past dental visit disasters. She looked at Colby's teeth and said they looked great. She hardly scraped on them at all. I said huh, but I wasn't about to argue. It was worth the trip up there for Colby not to have to go through that trauma. Now the bad news. Colby has 7 baby teeth that need to be removed as soon as possible. The dentist here in Louisville has been on me for over a year to do it, too, and this hygienist was like yeah, he really needs this done. Then the dentist came in and again said the baby teeth need to come out. So we will be scheduling Colby for oral surgery in Cincy some time soon. Yeah, I would rather stab myself in the neck with a rusty fork than put him through this, but apparently it really has to be done. Now it's major decision time again. I need to decide whether or not to go ahead and have Colby's ascended testicle surgery while he's under with the oral surgery. If you remember, we took Colby to a urologist a couple years ago, who insisted he needed to have the surgery to lower his ascended testicles (very common in SMA boys). But Colby's neurologist and pulmonologist, his main doctors, didn't totally agree. They said if Colby ever had surgery for something else, consider doing it then. So here I am with decision time on whether or not to have both procedures done for Colby at the same time. Being an adult and making these grownup decisions really bites sometimes! Then we took Colby to get casted for a new TLSO (back brace), AFOs (ankle/foot orthotics, i.e. shoes) and resting hand splints. The hand splints are new, trying to keep what motion Colby does have in his fingers. Got caught in horrible storms on the drive home. Made me just a bit on the nervous and not-so-happy side. But once we got Colby home, unloaded and settled in, it was time to watch some b-ball. March Madness, baby, love it, love it! My IU boys played and won their first game in the tournament - woo hoo, way to go Hoosiers. What a perfect ending to a crazy busy day! Now they need to take care of VCU tonight. Go IU - FIGHT FIGHT FIGHT!!

Yesterday we just took it easy around here. Got rested up from the Cincy trip the day before. So do I have wild, exciting St. Patrick's Day plans today? Heck no. Couldn't get a sitter. I'm pretty bummed. I always try to do something on St. Pat's Day, but just couldn't get it arranged this year. I didn't even get any corned beef and cabbage to make for supper. I'm really slipping these days. Oh well, I'm back on the diet and exercise kick anyways. Got 10 pounds off, time to get the next 10 off. No juicy, fatty, tasty corned beef - dry, tasteless, rubbery chicken breasts instead haha.

I hear Mr. ColbyRuss JabberPants back there telling me he's ready to get up for the day. Better go tend to my sweet boy. Peace out peeps.

p.s. - Did I mention GO IU, FIGHT FIGHT FIGHT. Stick it to VCU. Loves me some Hoosiers!!!

Monday, March 12, 2012

PERSPECTIVE - GET YOU SOME



Ever go through a phase and you're just happy? Or maybe content is a better word? Maybe not doing cartwheels up and down the street, but thinking hey, things aren't really all that bad. That's where I am right now. Colby and I have had a good weekend. Did anything earth shattering happen? Not really. Didn't win the lottery. Didn't hear of a cure for SMA being discovered. Didn't meet my Prince Charming. Still driving a Terdmobile. No housecleaning or laundry fairy showed up while we sleeping. However, I've had that "too blessed to be stressed" saying in my head a lot the last couple of days. Not sure what brought it on or how long it will stick around, but you can bet I'm thankful for this warmness and fuzziness. And NO, I'm not drinking, if that's what you're thinking!

Maybe it's a matter of perspective. You won't hear me complaining about this "dumpy little apartment" any time soon, because Colby and I still have a home. That's a lot more than many people around here can say. People say they can't imagine what it's like to raise Colby by myself. Well guess what? I can't imagine what the tornado victims in Henryville are going though. I really can't. To lose everything? To hear the tornado coming and wonder if you and your family will live through it? To see the town where you live demolished? Even after seeing the damage, I still can't believe it. My heart breaks for those who suffered loss from the tornados. Mother Nature has been a real bitch lately. First the tornado, then 2 days later she dumped several inches of snow on us, followed 4 days after that with a couple inches of rain. Really, I mean come on! Makes me appreciate the last couple sunny days a whole lot more. Sometimes I think that's why we get handed situations that stink like a pile of terds. So that when something better comes along, you can truly appreciate the goodness and beauty of it.

Dad, Colby and I went to the St. Patrick's Day parade up the street yesterday. Wow, I forgot how wild it gets up there. It was crazy! I thought my dad was going to stroke out between the parking, drunkards, crowd, and people throwing candy and green beads from floats. He was constantly covering Colby's face and head. It did seem wilder than in years past. There were people with a green beer in one hand, drinking whiskey straight from the bottle in the other hand. I must have seen 100 people sucking down Jello shots. Maybe it was the sunshine that brought everybody out. Maybe it was because St. Patrick's Day is an excellent excuse to get drunk and act like a complete fool. Ah yes, I used to be right in the middle of all that mess, party till the cows come home kind of stuff. Nowadays, not so much. But that's just fine. Colby was able to get out in the sunshine and do something different, and that's more fun than any drunkfest ever could be. Plus I didn't wake up with a hangover. Yep, after drinking 25 years, I've finally learned the cure for a hangover. Don't get drunk in the first place.

So this is what I get for drinking hot tea at 8:30 tonight. Almost midnight and I'm still up. I'll regret it tomorrow. Guess I should take my content, thankful, big old butt to bed. Try to find goodness and beauty in something tomorrow, no matter how tiny or simple it is. For every dark and horrible day you have, a better one will soon come your way. I truly believe that.

Friday, March 9, 2012

SLEEPING VS BLOGGING - guess which one usually wins

Here it is, 10:45 on a Friday night and I'm getting ready to go to bed. What a party animal I've become! I can hear Colby back in his room jabbering away, not sleeping. Go to sleep, stinker. The dishwasher is running. I've got music videos playing on the TV. Yes, I'm addicted to CMT, VH1, Behind the Music, Crossroads, Pop-Up Video, all of them. Sad but true.

I'll start with my absolute favorite topic, my sweet Colby boy. He's doing much, much better lately. He's not having those goofy high heart rate issues. His oxygen alarm isn't going off through the night. You have no idea how happy that makes me. That kid was worrying me to death. We'll have his IEP meeting in a couple of weeks. The goal is to get that eye gaze in front of him more often at school. Guess I'll have to step it up, too, and start using it more around here. He's been extremely vocal lately. Jabbering like crazy, very loud when on his bi-pap. Another sign that he's doing well. The wheelchair guy is coming on Monday to adjust his power chair, again. Colby has grown so much the seat depth needs adjusting. He has also outgrown his TLSO (back brace) and AFO's (shoes) and we're scheduled to go to Cincy for him to be re-casted for those. He also has a dentist appointment in Cincy the same day, Thursday. Oh joy, taking Colby to the dentist. It's a nightmare. For years he has seen a dentist here in town, but I figured what the heck. He goes to Cincy for everything else, might as well go there for the dentist.

For those of you who don't know, my hometown was destroyed by a tornado last Friday afternoon. I haven't lived in Henryville for the last 15 years or so. But as I was watching the news coverage, it was like turning back the clock. I was back in that little "our town is so small we don't have a stop light" town. I loved growing up there. I do have relatives and very good friends still there, though. Today my dad, Colby and I drove up to check it out. Henryville is 20 miles from where I live now. I've seen tons of pictures and videos of the tornado and the damage it caused. I was told by people to prepare myself for what I was going to see. I thought I was ready. Well, I wasn't. Words cannot describe it. Everywhere you look something about that town is changed forever. Houses and businesses demolished. The elementary, middle and high school, all on the same property in the heart of the town, destroyed. Police cars, bulldozers, tarps, buses of volunteers, disaster relief organizations set up everywhere. Trees plowed over and uprooted. Debris scattered. Hail damage. Emergency shelters set up. TV crews everywhere. Seriously it looked like something out of a freakin' movie. From what I hear, the outpouring of donations and help for Henryville has been amazing. It will take months, maybe even years, to get things back on track there. But the cleanup has begun. My dad said they have cleaned up a lot in a week. I'll be honest, I found that hard to believe from what I saw, but apparently there has been a lot of improvement over the last few days. Wow, you think this kind of stuff will always happen somewhere else. Henryville, the smallest of towns with the biggest of hearts! I've told Colby over and over this past week that we were lucky. We were spared where we live. We're praying for Henryville's residents every day, for a speedy recovery from this disaster.

I'm okay I guess. Trying to exercise more. Trying to get to bed earlier, hence, there has been less blogging. Trying to find a new babysitter. We love the babysitter we've had for a couple years. She's just a very busy young lady these days and doesn't have a ton of availability. I've done nothing and been nowhere that resembles anything of having a social life. I even missed Wine Night in February because I wasn't feeling well and you know I don't miss that for anything! I plan to change this antisocial behavior as soon as possible. Time to leave this nasty, cold winter crap behind, along with thyroid issues, Colby not feeling well issues, etc. Bad times, be gone! Time to get out and have some fun, whatever that may involve. I'm also super glad my mom and stepdad are home from vacation! A 3-month vacation to be exact. They head to warmer winter once winter hits around here, and who could blame them?! I would, too, given the opportunity. Just glad they made it home safely.

Okay, I'm yawning like crazy and am freezing cold. Going to crawl in my bed and turn on my electric blanket. Good night all.