JUST GIGGLES AND GRINS AROUND HERE. Well, maybe not

Oh wow, we've had so much fun around here the last 3 days, I don't know where to start in telling you about it. Nah, just kiddin, it has totally sucked. I was sick with a head cold and even worse, sweet boy got sick, too. Breaks my heart to see him all puny and miserable. He just looks so awful. Colby had gone to school Wednesday. That night he started with a high heart rate, very high actually. It continued to get worse from there. Blaaaaaah. Colby missed school Thursday and Friday. I cancelled my Endocrinology appointment on Thursday and missed work Friday. I was up through the night giving Colby cough treatments, and along with being sick myself was pretty much exhausted for a couple days. No way in this world I could've gotten Colby to the pediatrician. We were both too yucky to get it done. Luckily the pediatrician trusts me enough that when I called and said hey, Colby is sick, please and thank you call him in an antibiotic, he did. Good man. Colby had a much better day yesterday but has struggled a little today. But his fever is gone and his secretions are back to a nice clear color. Yellow/green secretions, not cool. So slowly but surely he's getting better. What took me 3 days to get over will probably take Colby 7-10. Another way SMA sucks. A little head cold can totally knock an SMA kiddo down and out. "Not fair" is an understatement.

There you have it, our last few days. Oh yeah, my birthday was Thursday. Woop-dee-doo. I could have cared less. All I wanted to do was nap and breathe through my nose. Hoping to do some celebrating next week since I'm feeling better. I got lots of nice cards, texts and phone calls. I've fortunate to have so many people care about me and remember my birthday. My BFF stopped by after work and brought me flowers, broccoli cheese soup from Panera and bread pudding from The Café. She knows me well and yes, it made me feel better!

Anxious to see what tomorrow brings. If Colby is doing okay, I'll go in and work some. I don't know though. If he feels the way tomorrow that he did today, I'll stick by close. So many times over the last couple of days I'd walk into Colby's room and his heart rate would immediately drop 10 or so points. Aaaaah, he wanted me in there with him, and that makes me feel warm and fuzzy all over. He may be Mr. Big Shot 12-Year-Old, but at times he still needs his mama.

Time to get kid in bed. I possibly see a nice hot bubble bath in my immediate future. I think I deserve one, don't you?   

PARTIES, POOLS AND FEELING POOPY

Colby's party was huge, wonderful, fantastic, special, and all around freakin' fantastic! We're all still talking about it, and I have so many people to thank. I had help deciding on the theme, sending out invitations, decorating, making food, picking up the cake, paying for items, everything that needs done for a party! Basically I bossed everyone around and told them what I wanted, then showed up with Colby for party time, that was my job. And the fireworks. Oh my, they were remarkable. These were not your average sparklers, trust me. Giant loud fireworks that made that "thoomp" sound when they were lit and shot off. Thank you, thank you to everyone who helped. Thank you, thank you for all who took the time to come see Colby. I don't want to list individuals because I would feel badly if I left someone out. Again, for all who helped and for all who attended, THANK YOU for making Colby's late-4th-of-July-belated-birthday-back-to-school-Colby-kicked-spine-surgery's-ass party so amazing and memorable. The look on Colby's face when I rolled him out of the van and he started looking around at all the people there. Priceless! And the look on his face during the fireworks, doubly priceless! It'll be very hard to top our surprise tie-dye fireworks party.

We've started another project with Colby. I contacted the high school near our apartment in hopes of finding Colby a big brother/peer/friend. Colby needs friendship and male interaction in his life, not just his mama, grandparents and nurses around him all the time. It took a few weeks to get the ball rolling, but I think it's going to work. Two students came over Monday and "hung out" with Colby for about 45 minutes. Colby and I showed them Colby's eye gaze and what all it can do. They were fantastic with Colby. Next time they come over they're bringing pics of their pets as a topic for conversation. Hoping these boys can encourage Colby to communicate more accurately. Two more students are coming over tomorrow after school. Very excited for Colby to make some age-appropriate friends.

We took Colby swimming yesterday for the first time in several weeks. And today we are just plum tuckered out. Yesterday I started sneezing like crazy. Then my head got stuffy, along with a little achiness. Dammit, this mama ain't got no time for dat! We didn't have a nurse last night so by the time I unpacked all our swimming stuff, got ready for school today and got Colby in bed, I was exhausted. I took a swig of TheraFlu, rubbed a little Vaporub on my nose. It's the bomb when you have stuffiness! I think it took me all of 3 minutes to fall asleep. Felt better this morning but as the day has gone on, symptoms are returning. Well hell. Colby is also a little "off" tonight. Higher than normal hear rate and just a slight tinge of color in his trach secretions. So it's doubtful he'll be going to school tomorrow. Maybe we both need some TLC and rest. And Vaporub haha!

I did survive my dentist appointment today. A miracle indeed. I hate going to the dentist with a passion. Terrifies me. Seriously, I hate it. I went last month for x-rays and a consultation. I had a tooth that was driving me crazy. And ta-da, now it's all fixed. And my teeth are super clean and flossed. Good for another year. Then the dentist panic will hit again.

Going to take another dose of Theraflu, rub some Vaporub around my nose (sexy huh) and hit the sack. Tonight it will probably only take 2 minutes to fall asleep. We'll see what tomorrow brings. Hoping sweet boy feels better in the morning. I'll blog tomorrow and let you know.

WEEKEND WRAP-UP - Not much up with us

Not much to report since my last blog update. I was supposed to go to an IEP meeting for Colby on Friday, but it got cancelled at the last minute. It's rescheduled for Thursday of this week. Friday night I actually went out with friends for dinner and then to see a band. Don't even know the last time I did something like that. Had a great time. We're going to get together and do it again in November. Whoever said hangovers get worse as you get older sure wasn't kidding. I had a few drinks, didn't get totally carried away/wasted, but still had a bit of a headache on Saturday morning. Just can't throw them back like back in the old days. But I'm thinking that's probably a good thing.

No nurse yesterday. How many times have I reported that lately? I would call the nursing agency and say hey, we need more weekend coverage, but it wouldn't do a bit of good. I've called and said that I bet 20 times in the last couple of months. Don't get me wrong, I love it when it's just Colby and me. But seriously, I couldn't tell you the last time all of Colby's available shifts were covered in a week's time. We have 5 nurses on Colby's case, one full time and 4 part time. Looks like we need to find us a 6th! My mom came over and helped me get Colby up. Then she helped me study my pharmacy math/word problems for a while. Studying for that test is not going well. Totally stressing me out! My dad came over last night. The Moose Lodge had their annual member picnic and he brought me some grub. Best pork chop I ever ate! Wish I was chowing down on another one right now.

We've been using the vocab builder on Colby's eye gaze. This teaches him where specific words are. Hard to explain. Basically on Colby's "home page" there are 84 pictures/words. Yes, he can navigate among 84 tiny pictures, and he does it with amazing accuracy. So you can go into vocab builder and tell the eye gaze the words you want Colby to learn. Then when you go back to the home page, only those words will show. Make sense? Right now we're teaching him basic words like go, get, make, read, you, up, teacher and a few others I can't remember. Then the teacher sent home the vocab words they were going to use the next day in class. So the speech therapist showed me how to do the vocab building thingy, and now I'll be able to do it any time the teacher sends home a new list of words they're working on in class. Yesterday he did a fabulous job focusing and working on vocab. Today, not so much. That's okay though. Not forcing it on him, because we've learned the hard way that just doesn't work with Colby.

You know what I've been doing all day. Yep, watching football, along with trying to get some housework done. Basically all I wanted to get accomplished over the weekend was to pick up stuff and get organized. I spent the whole afternoon moving crap around from one room or corner of the apartment to another. Great googly moogly we cannot get a house soon enough. Now I'm just waiting for the Colts game to start. C-O-L-T-S Gooooo Colts!! So I'll wrap this up for now. Need to get my nachos ready before kickoff. More soon.

GIMME GIMME GIMME SOME NFL

Okay, this has to be a quick update because football is on! Do you hear me? Football season, more specifically the NFL, has begun. So stinking happy about that.

Colby had his 5th day of school today. It's going okay, considering all the newness going on there. Still a couple of issues that need to be addressed. Won't go into too much detail on those just yet. Tomorrow I'll be going to an IEP meeting at school. I share the feeling with many other SMA families, we despise IEPs. They're horrible. Actually I've never met a parent that enjoy IEPs. Nothing like having to fight tooth and nail for something you feel your child needs/deserves. But what else is new? I've fought for that kiddo for 12 years now and see no need to stop any time soon. So look out school, Mama's a comin'.

I do have a cute eye gaze story. The nurse was telling me this when they got home from school today. About 20 minutes before it was time to load the bus to come home, Colby looked at his eye gaze and said "leave". As in, later taters, I'm ready to get the heck out of here. Funny kid. Then a few minutes later he said "love home". Aaaaah. That's my sweet boy. I guess at that point he was thinking he'd say anything if it would get him out of class. He's a hot mess. His health has remained incredibly stable. Words cannot describe how thankful I am for that. I'm still a nervous wreck every time I watch that bus drive away. I'm hoping the more he goes to school and the more good days he has, the less I will worry about him having a choking incident.

Did I mention football is on now?! Holy crap on a cracker, I'm totally geeked up about it. I won't be making it to Mass this Sunday I'm sure, way too many games on. I'm sure Jesus will understand, right?

I've been studying my buns off for this nasty, icky, super duper hard state certification test they are making me take at work. At first I said, uh no, I'm not doing it. It's way too hard and none of this crap even applies to my job, so I'll quit before I take that test. Yeah well, that attitude didn't last long. There's no way I'd find another job making what I make per hour along with having the flexibility that I have at my current job. Dammit! I seriously don't have time for this. Too bad I suppose. Trying to find a little time every day to study. Quite honestly, my brain hurts.

I'll try to do better at blogging in September than I did in August. No promises. In looking at my calendar for the month, it's pretty full. I have done crap this month like lab work, a dentist appointment (pray for me), etc. I haven't even looked at Colby's schedule yet. I know we don't have any trips to Cincy this month, so that's good. Oh, and I'm planning a surprise party for Colby. It's a combo July 4th, belated birthday, you're-an-awesome-kid-and-deserve-a-party kind of party. So much to do, so little time. But it'll get done. It always does.

Wrapping this up now. Need to watch the rest of the Packers/Seahawks game. In case you were wondering, I love football!

THURSDAY'S THOUGHTS

I'm here! My computer isn't broke, nor are my fingers or thumbs broke. I know I'm long overdue for a blog update, so let's see what I can come up with tonight.

I know every time I blog I say we've been busy. Well, it's true, we seem to stay pretty darn busy around here! Last week was especially so. I worked the whole week. It gets a little cra-cra on those weeks being away from home so much and still trying to do what needs to be done for Colby. But I managed. Didn't throw any fits or break any equipment at work, so that's always a plus. Hopefully it will be a while before I need to work 5 or 6 days in a row. That boss of mine has to be running out of vacation days soon, right?!

This week, busy also. Monday we went to the pet store. We checked out the puppies, rabbits, birds, fish and ferrets. Leave it to my kid to be fascinated by the baby ferrets. Colby has lost his mind if he thinks he's getting a stinky, sharp-toothed, rodent-looking pet. We picked out 6 new fish. Yes, we're giving the fish tank another go. To jog your memory, we had 3 fish back in the winter. Killed them all within 3 months. The water in the tank is very cloudy right now. They tested it twice at the pet store and said it was fine. We're down to 5 fish as of now. I'm determined to get this son-of-a-bitchin fish tank running successfully. Monday night we took Colby to see TMNT. That's Teenage Mutant Ninja Turtles for those who don't know. He liked it! He actually watched the movie and didn't jabber through the entire thing. Good job, Colby.

Tuesday we took Colby swimming for the first time since before surgery. I couldn't do a lot of the exercises/PT I usually do in the water with him since he's still on some post-surgery restrictions. He loved it, as always. Tuesday night was the open house at Colby's school. I thought it would be a good idea for Colby and his teacher to meet before he started school. It was miserably hot in that school building. I guess with people coming and going and the door being opened so much, the AC just couldn't keep up. Couldn't wait to get home. This hot weather can just go away at any time. First person I hear complain about the cold gets punched directly in their throat. I freaking hate hot, steamy, miserable, humid weather. Absolutely hate it.

Yesterday I worked, so Colby just hung out during the day. I know he was tired after everything he had done so far this week. Last night I ran around this apartment like crazy getting Colby ready for school. That's right, sweet boy's first official day back to school was today!! Luckily the nurse who has been working with us since we got home from surgery has agreed to go to school with Colby. This is a huge worry off my mind. He'll be great with Colby, but for now, he's a rookie in the sense that taking Colby to school is a whole different scenario than watching him here at home. New nurse, new morning bus driver, new teacher, new speech therapist. Me, nervous? You bet I was. I followed the bus to school and stayed in the back of the classroom for when the nurse had questions. Tomorrow I will do the same. Colby had a great first day. No crying, no whining, no choking. Can't ask for much more than that! Now we have to get through tomorrow, too, then Colby will have 3 days to rest up and get ready for school next week. Check out the pic below. Is he not the most handsome 7th grader you have ever seen? Yes, yes he is.

Colby and I have finished reading his Hardy Boys book. Now he needs to decide if he wants to start reading Harry Potter or another Hardy Boys mystery. That Frank and Joe, you just never know what shenanigans they'll get into, haha. I'm hoping for Harry Potter. But then again, if we start that book now, chances are a year from now we'll still be reading it. We're not what you call consistent on reading every night.

That's it for now. Need to unpack and repack the dishwasher, fold the clothes that just buzzed in the dryer, and go tuck in that awesomely awesome sweet boy of mine. More blogging when I get time. Soon I hope.

 

 

BLOGGING EARLY WHILE MY BRAIN IS STILL WORKING

August is designated as SMA Awareness Month, and I feel like I've done a big fat zero nothing in helping to spread the word. But then again, hopefully my blog continually helps to educate others on the everyday triumphs and heartbreaks that come along with this disorder. There's no way I could blog about SMA and simply give the facts and statistics associated with it - too emotionally tied to it for that. For now, let me just say this. SMA is a horrible, devastating diagnosis. However, I refuse to let my mind "go there" in relation to what SMA has taken from my son. I simply can't do that, or I would have given up and had a breakdown years ago. Instead, I choose to focus on any good or positive I can find. Not only is Colby alive and beating the odds, he is thriving, and that's more than I could ever ask. I'll work on some awareness stuff on the rest of my blogs this month.

 For now, I'll update you on what we've been up to lately. Our weekend was good. I watched a lot of golf. And yes, it was by choice. The PGA tournament was here in Louisville, so that was an extra incentive to watch. Plus I'm slightly weird, I just like to watch golf. Saturday we had no nurse, and that was fine with us. After doing the Cincinnati trip on Friday, Colby and I needed some down/chill out time. I did manage to give him a bed bath. Really just wanted to get his hair washed. It can get pretty funky after a couple of days. I think the only other time I left the apartment was to go to Mass on Sunday. Colby didn't leave the apartment all weekend, too hot and muggy to get him outside. But again, needed some down time and needed to get stuff done around the apartment, so that was fine, too.

We did light our candle for SMA Awareness on Saturday night. There is one Saturday night designated for this in August. Anyone who wants can light a candle as a way to remember all the angels who have passed from SMA, and also to honor those who continue to fight the SMA battle. And trust me, it is a battle/war. It was emotional and powerful seeing on Facebook all the candles lit from different families. I want to thank my friends who took the time to light a candle. It means a lot to me that you cared enough to do that. Maybe next year I could get my act in gear and arrange a group candle lighting. Note to self for next August.   

My mom came over Tuesday. We took Colby's wheelchair outside and cleaned it. I'm talking take an old toothbrush and clean every nook and cranny clean. Amazing how filthy that chair gets. It was nasty gross, with what I assume was a combination of food, dirt, slobber and various other unpleasantness that has collected on it over the last year or so. Looks fantastic now, though.

School in Colby's school district started yesterday, but of course he didn't go. I'd estimate Colby to be 80% recovered from surgery. He has done amazingly well, but not quite ready for bumpy bus rides, sitting up all that time in class, etc. I'm thinking I'll send him the last week of August or right after Labor Day. He is able to sit up 1.5 hours easily, sometimes up to 2 hours. Obviously he needs a little more time to heal and build up his sitting tolerance again.

Okay, that's it for now. I need to get a shower before the nurse gets here at 8:00. Not sure what we have planned for today. If the weather is decent we'll get Colby outside to practice driving his chair. Or in his case, practice spinning in 1000 circles. Kid drives me nuts. Why in the world doesn't he want to drive forward, explore his surroundings, decide for himself where he wants to go?! He obviously doesn't wish to do those things. So if spinning in circles makes him happy, I guess I'll let him do it. Lord, give me patience, and please hurry!

PLAYING BLOG UPDATE - Yes, I know it's been a while

A friend of mine told me last Sunday at Mass that I have been "blog-less" for a while. And yet here it is, 6 days later and I'm still blog-less! I got up early today just so I could give a blog update. Actually that's not entirely true. I also needed to get the laundry sorted and get a load going, so I took care of that first. Now it's time to catch everyone up on all things Amy and Colby.

Busy. That basically sums it up for me. As a lot of moms, especially single moms tend to do, I have neglected my own health a bit over the last couple of years. Now I'm playing catch-up. This week it was a checkup with my new family doctor and a dreaded visit to the dentist. I'm one of those individuals who hate, despise, and am all around terrified of going to the dentist. It's disgusting! The noises, the sounds, the smells - it's all just too much for this chick to handle. However, I have a tooth that has been driving me crazy for the last couple of months. I told myself as soon as Colby got home and recovered from surgery, I was going to get that tooth taken care of. Dammit. So I am. Went to a new dentist. They just did x-rays and a consultation this visit. Still hated it. The "bad" tooth has a filling that has come out, so I get that fixed along with a teeth cleaning next month. Blah, blah, blah. I'm dreading it. Stupid sadist dentist. Mammogram this coming week. Woo-hoo.

Wednesday I worked. I've been told by the pharmacy I have to take this awful pharmacy tech state certification test in order to keep my job there (insert extremely large sigh and eye roll). There are 2 of us that work in the pre-pack area. First we were told we had to take the test. Then we were told we didn't. Now we're being told we do. Super duper. The other pre-packer (is that even the proper term for us? Don't know) just took her test yesterday and passed. So now there's no getting around it for me. If I want to keep my job there, which I do, time to get busy and study. Sure. Great. No problem. I'll find time to learn formulas and pharmacy information that I'll NEVER use at my job. I don't know the first thing about retail pharmacy or compounding pharmacy because guess what - I don't need to know these things in order to do my job properly. Pisses me off to no end. But I'll do it. Soon. It's on my ever-growing, overwhelming "to do" list.  

Thursday was the dentist in the morning, then I came home and packed us up for Cincinnati. Colby had a follow-up appointment yesterday with the ortho surgeon. Can you believe it's already been 45 days since Colby had his spinal fusion surgery?! Holy moly time sure does fly. We went up Thursday night and stayed at a hotel near the hospital. I don't think Colby is ready for an up-and-back car ride to Cincy yet. Too much sitting, too many bumps, etc. And of course the road construction is awful no matter where you go. Plus our appointment was early, 10:10, and we had to get x-rays first. So Dad, Colby and I went up Thursday night and headed out bright and early from the hotel Friday morning. The surgeon said Colby looked fabulous, which I knew he would. Check out the x-ray of Colby's hardware below. Unbelievable. Colby's incision looks fantastic - no redness, puffiness or signs of infection. Every now and then we'll see a spot of blood at the bottom of his incision, but the surgeon said this is normal. He said everything looks good and he wants to see Colby again in 3 months. He gave the okay for Colby to go to school, but only if I think he's ready. And I don't. School starts next week on the 13th, but I've decided Colby needs a couple more weeks. So I'll probably send him back the last week of August or might wait until after Labor Day. Haven't decided yet. The full time nurse we have has agreed to go to school with him. Thank you, Jesus, this is such a win-win for everyone, but he still has to do orientation with the school nursing agency. So I couldn't send Colby to school until that's done anyways.

I see my blog update is getting long, so I'll close it up for now. Actually it's also time to give Mr. Colby Sweet Boypants his morning meds also. We have no nurse today, and that's fine by me. We're both tired from the Cincy trip, so we're going to have a spend-the-day-in-our-pajamas-all-day day. Oh who am I kidding, I'll be in my pj's and that kids will probably just hang out in his brief. Maybe some socks if his feet get cold haha. Colby has spent the majority of his summer naked, and he seems perfectly fine with it. Me too, less laundry. More blogging soon. I'll do better with updates, I promise. Well, I don't promise, but I sure will try. Bye for now. Hope everyone has a super duper weekend. Count your blessings. Be grateful. Smile and give someone a hug. Or throat punch, depending on what the situation calls for. Sometimes jackholes just need a throat punch, case closed.