LET THE HOLIDAY FESTIVITIES BEGIN

Another week has come and gone. Someone please tell me where the times goes, and better yet, tell me how to slooooow time down. I was looking at Colby the other day and thought, OMG, he's 12 years old! How and when did this happen? He's getting a moustache for crap's sake!!

So this is hopefully the last or next to the last time I blog on this teeny tiny iPad keyboard. I bought a laptop today! Well, I ordered it off the internet anyways. Should be here in 4-7 business days. Super big shout out and a big fat thank you to my friend Jimmy for helping me navigate through all this. Actually he did all the work and research. Then he said what do you think? And I said uh-huh sounds good. He' so funny. He already knows I'll need help setting it up and has offered to do it. Yay!

We've had lots of nursing changes around here. One nurse quit. One nurse is having surgery. Lately we have had 3 different nurses in here to shadow and start. While it's great because we needed shifts filled for Colby, it's always nerve wracking having new people work with Colby. We're stumbling through it and adjusting the nursing schedule as it comes along. Hoping Colby likes the new nurses. Haven't had a chance to talk to him about it. Too many people around, ha!

Remember when I won tickets to the Colts game? That was awesome. Last Thursday at Colby's school they had their annual Turkey Trot. Families are encouraged to eat lunch with the students, then walk laps around the school (inside). My kid neither eats nor walks, but hey, I'm a team player so I went. Signed up to win a food basket. The school was giving away 3. And I won on! That food basket is ginormous! I hit the jackpot! The turkey was too big to fit in my tiny freezer. How lucky am I lately?!

Not very. Went out to go to work Saturday morning and had a flat tire. I've never walked out and had a flat tire. I didn't panic-I didn't lose my mind. It's all good. Borrowed a vehicle from the ex to get to work. Called my daddy. He fixed the tire while I was at work. Bing bang boom, flat tire no longer an issue.

Ok, it's 10:00. Colby is waiting for his Harry Potter read for the night and I have clothes in the dryer to be folded. More blogging and updates soon. Going to be a busy week. Much Turkey Day prep work to do. I'm hosting! Lord have mercy. Will have 8 people crammed into this little apartment. I can do this. I can do this. Just hope the toilet doesn't overflow like it did a couple years ago at Christmas. Nothing says Happy Holidays like plunging the commode. Hoping the plumbing gods smile down on us Thursday.

LONG WEEK, HARD DAY, CALGON TAKE ME AWAY

Friday night, 8:20. I'm in Colby's room typing on this very petite keyboard on this small keyboard. Yep, my computer is definitely effed up. Don't know what else to do except get a new one. So if this blog is full of typos, forgive me and deal with it. Remember, tiny keyboard. Colby is lying in his bed, AFO's and hand splints on. Trying to get him, again, to watch the first Harry Potter movie. He's not having it. We just read the book, why doesn't he want to watch the movie?! Maybe he doesn't like English accents? Who knows. It's at the point where the talking hat is picking which house the students will go. Colby really doesn't care. I should post a video of him whining and looking everywhere but the TV screen. Then you would understand how I can tell what Colby is trying to tell me most of the time. Hold on while I find him something else. Okay, let's see if he'll tolerate Ice Age until I can get this blog done.

This week has been full of ups and downs, with a focus on downs. I know I shouldn't focus on the negative. I know I have many blessings in my life, and when you "look at the big picture" we don't have it half bad around here. There are a lot of people around me who are going through issues much more serious than our problems currently. I have friends who are missing loved ones who have passed away within the last few months. I wish I could find something to say to help comfort them. Seems I always fall short. I have friends going through surgeries. The nurse who goes to school with Colby has been sick. He missed 4 days this week, meaning Colby has missed school and I had to miss work today. Today is a hard day for me. November 14, the day we received Colby's SMA diagnosis. Very hard to believe that was 12 years ago. From that day forward, our lives were changed forever. I'm not saying changed for the bad. There have been lots of joyful, wonderful moments over the years. Been a lot of complicated, difficult ones, too. So here I sit, in this little bedroom in this little apartment, on this little keyboard, a single mom to a special needs child. Wow, didn't see any of that coming my way. Every November 14 is hard on me. I say I won't let it get to me. It's just another Friday or Tuesday or whatever. But we all have days, joyous and shitty, that stand out, and today just happens to be a shitty one for me. Glad this day is almost over.

We (the SMA community) received a shock this week. There is a sweet, wonderful family that lives up East. They are mourning the loss of their son. We're all so saddened and shocked to hear of his passing. This family is very active in the SMA world. I cannot find enough "good" adjectives to describe them. She is the best mom EVER because the boy who passed away had SMA Type I, just like Colby, AND an older brother with SMA Type I also. I have learned so much over the years from this family. By following their lead, we've learned how to "live" with Colby's disorder, not just exist with it, trudging through life. This family took their boys to camp, parades, outings, school, etc. Always so willing to offer advice and support to other SMA families. I don't know the details. Not really sure I want to know. All I know is it sucks. I wish I could do more. I honestly can't imagine what this family is going through. I know the big brother will miss his little brother terribly. How do you even begin to move forward after such a loss? I have no idea.

I'm not going to lie, I just wanted to check out for a couple of days. Wanted to get in my van, start driving, and keep going until I had no gas.Wherever I ended up, fine. But get real, I wouldn't make it 2 miles up the road without my sweet boy as my sidekick, so that wasn't an option. Then I thought, screw it, I'm going to get drunk, really, really, snot-slinging drunk. Once I gave it a little more thought, that didn't seem like the answer either. What they say is true, hangovers are a bitch when you're over 40. Plus there's been a lot of time we haven't had a nurse this week, so I really needed to be on my toes so I could care for sweet boy. Plus I thought maybe a tribute to this wonderful SMA family would be to cry when I needed to, but keep pushing forward. Be the very best mama I can be for Colby. Can't do that if you're drunk\and or hungover. Trust me, I know, learned that several years ago. So I've spent extra time with Colby. Not only being in the same apartment with him, but taking the extra time to really talk to Colby and spend that QT with him. That felt like the right thing to do and that's what I've been doing.

Praying that the new nurse shows up tomorrow at 8AM sharp. Not in the mood for any nursing BS so for here sake and mine, she needs to be on time and ready to learn Mama's way of taking care of Colby. She did a shadowing shift last weekend to get a feel for the in's and out's of Colby care. I didn't spend a lot of time with her because I was at work. We shall see.

Okay, time to get kid in bed, then I'm going to take a steaming hot bubble bath. Because I deserve it. More blogging soon Hopefully it will be a bit more upbeat.

IT'S MONDAY - LET'S GET GOING AND HAVE A GREAT, PRODUCTIVE WEEK - OR AT LEAST TRY

Good Monday morning, blog readers! Time to chug down some coffee and get this week started, don't you think? Here's the latest with us.

There has been a change in plans for today. Colby's nurse called in sick. I talked to him and he sounded horrible. So yes, I think he is legitimately sick. He won't be coming in today, which means no school for Colby. This also means I won't have a nurse all day, but that's okay. I'm getting rather used to not having nursing. Been working with the agency to get empty shifts filled, but it's not as easy as it sounds. We haven't had Colby's nursing schedule filled in months. Then we had one nurse quit and another is having surgery soon. Uh, yeah, we need to get some more nursing peeps in here to cover these empty shifts, like ASAP pronto. Having nursing help in our home is not the magic answer some people think it is. It comes with its own issues and problems, trust me. Makes me very thankful for the great nurses we do have. This is the first sick day Nurse Dave has taken since he started working for Colby in July. Hope he gets better and can make it in tomorrow.

Took Colby to Cincinnati Friday for a follow-up appointment with the spine surgeon. Colby got the “all clear.” Yay! They took x-rays and the surgeon looked at Colby's back/incision. He said everything is right on track, looks great, and gave Colby the okay to resume activities to what we were doing pre-surgery. Surgeon said the only thing Colby wasn't allowed to do is sky diving and bungee jumping. Haha, I think we can handle those restrictions. So I started giving Colby extra PT on his hips and wow, he is stiff! It's going to take some work to get him back to where he was. Hoping it's not too late and that Colby's hips haven't contractured. That would suck big time. We got stuck in traffic on the way home. Uggggg, that's so frustrating. But I tried to keep in mind we weren't the ones in the accident. We didn't get hurt or the van didn't get damaged, and that's what really mattered. But it was still frustrating, ha!

Colby's g-tube has been leaking lately (insert big sigh.) This is new. In 12 years, Colby has never had an issue with anything digestion-related. This is saying something because many SMA kiddos have motility issues. My guess is the size of his Mic-Key button needs to be changed. That's the way he eats. You stick an extension and syringe in the Mic-Key button and pour in his food, straight to his belly. Colby eats nothing by mouth. He only gets to taste foods occasionally. So if it's leaking and he isn't getting all the nutrition he needs, that's a big deal. Will start making some calls on this issue today. Can't have that stinky food leaking out, that's just disgusting.

Colby and I have finished reading the first Harry Potter book. I was so excited to watch the movie with him. Well, he hated it. Within half an hour, he was crying. When Harry is on platform 9-3/4 getting ready to go to Hogwarts, the tears began. Oh sweet boy. Sometimes I just don't know about that kid. I knew he'd love it! Wrong, wrong, wrong. Maybe we'll try again. We watched it Friday after being gone to Cincy all day. We were worn out, so maybe Colby just needed his familiar Spongebob and wasn't in the mood to try anything new. The nurse and I gave Colby a hair cut and bath last night. Not exactly an easy task, but it definitely needed to be done.

As for me, I have much to do this week. Many, many phone calls to make, not just Mic-key button issues. Booooo. I have some paperwork/mail to go through. Getting ready to start a load of laundry and get boy up for the day. I'm also working extra days this week, so I'll need to get these phone calls and other bullcrap stuff done before Wednesday. I've been trying to eat healthier/lose weight and you know what, it ain't easy! Incredibly frustrating as a matter of fact. There's measuring portions, chopping veggies, reading labels when grocery shopping, finding time to exercise. It's like having a 3^rd job around here. 1^st job-full time mommy to Colby, 2^nd job-pre pack at the hospital, 3^rd job-start taking better care of myself. So time consuming and not easy giving in to stress eating and cravings, but hoping it'll be worth it. I've lost 4 pounds in 4 weeks, which is right on track for what “they” say is healthy weight loss. Hoping I can keep it up and take the time to take care of myself. Not easy. Not easy at all, but I must do it to be the best mama I can be to Colby. And I'm not going to lie, I want to get back in my skinny jeans!

Wrapping this up now. I hear Colby back there, awake and obviously wanting some attention. Will blog more in a few days when I have time and/or there is something to blog about for all you good peeps to read! Bye for now.

BUSY THEN LAZY - SOMEWHAT LAZY - WONDERFUL TO GET SOME REST

So what have we been up to this weekend? As little as possible! Seems like ever since we've been home from the hospital it's been busier than usual around here. Like cray-cray, I can't get all this stuff done, there's not enough time in the day, can't talk now I'm busy, somebody get me some vodka and an assistant kind of busy. But finally seems like it has finally lightened up a bit. Thank goodness.

This was Colby's first week back to school. He did well, but by the end of the week he was super sleepy and a bit grumpy. I kept reminding him, hey kid, you're the one who wanted to go back to school. They did trick-or-treat at his school on Thursday. Always such a fun time! Check out the world's most awesome, cutest Beetlejuice ever! I went as Lydia Deetz and Colby's nurse went as the Brawny man. We didn't go out trick-or-treating Friday night. Too cold and windy, didn't have a nurse to go with us, and I think Colby's getting a little big/old for trick-or-treat. So we'll probably stick with the school thing from now on and that's about it. Colby's high school peer buddies helped him do a scary jack-o-lantern. It looked fantastic until the squirrels came along and ate through its face. Yep, took a chunk out of that poor pumpkin's mouth and nose. Darn tree rats! We stuck it back together with toothpicks haha. Then Colby's daddy helped him make a funny face pumpkin. Last I checked it was still intact. Introduced Colby to some scary movies Friday night. We watched a little of Halloween II. He didn't seemed impressed. We also watched The Lost Boys, and I could tell Colby was more interested in that. Maybe next year for Michael Myers.

Friends to the rescue! I know I've said it many times before, but I would be so completely worthless without my friends. My parents too, of course, but lately my friends have stepped up their awesomeness also. Let's just say I'm a bit on the technology challenged time. A couple weeks ago my computer went ca-poo-ey. It wouldn't shut down, then it wouldn't turn off. Had to unplug it from the wall. Then when I turned it back on, it started doing this self check/scan thing. Then it got stuck doing that. I just knew my computer was dying a slow death and that I was going to lose everything. Called my computer buddy Jimmy. He said try this, try that. We finally got the computer to reboot. So I ran out and got memory sticks and was able to back up all my documents and pictures. Thank God. Note to self, start doing more regular backups, duh. While we went to Cincinnati, he took my computer home and fixed it. Eventually I want to get a laptop and get rid of this bulky computer, but not just yet. I'm old school. I use equipment until it absolutely stops working or is so obsolete I have no choice but to get new. Then there was my cell phone. That poor thing really did die a horrible death. Drowning. It was giving me fits anyways. The front case fell off, and I couldn't get it snapped back on. So the battery was running down constantly, along with I was hanging up on people accidentally, butt dialing people, etc. It was awful. Then after I dropped it in the water, it really freaked out. (Yes, I swear it was an accident!) I could get a text but couldn't send one. I could make a call but couldn't get one. It was ridiculous. And my friend Rhonda comes along and gives me her old iPhone 4. Sweet! I never would've spent the money on an iPhone. I was so grateful not to have to go out and get a new phone, and the fact that it's an iPhone, bonus! Thank you, friends, I'd be up Poop Creek without you.

It hasn't been all work, work, work around here. I've been able to do some fun things, too. A couple of weeks ago I won tickets to a Colts game. Do you hear me?! I got to go to a Colts game for FREE! You can't beat that with a stick. I try to go to a Colts game once a year. For some reason didn't go last year. Oh wait, I know the reason, my money for tickets! I took my friend Chris. She had never been to an NFL game before, so she was excited, too. We had a great time, and it was even better when the Colts shut out the Bengals. Who dey, losers, that's who. Ha! Last Sunday some friends and I went to see Dracula. I've been wanting to see it for years. I had never been to Actors Theater. It was awesome! Scary as shit and totally fantastic. Loved it. So glad we went.

So this weekend we needed to catch up on sleep. Oh wonderful, peaceful, much needed sleep. I couldn't tell you the last time I went to bed and didn't set my alarm. And last night we got an extra hour from setting the clocks back, how happy is this mama right now? The only things I wanted to get done yesterday were do a load of laundry, update my blog and go through the mail. Well, 1 out of 3 ain't bad. Got the laundry done. Now obviously I'm getting the blog done. Still need to get the mail sorted. I know I have bills in there to pay (bummer) so that WILL get done today. Think I'll change out Colby's Mic-Key button this morning. It's been a little leaky recently. That's his g-tube/feeding button for those who aren't familiar with the term.

Wow, I can get chatty on a blog update. So I'll wind this up for now. Colby is off school Monday and Tuesday. I have an endocrinology appt this week, along with an eye doctor appt. Then we take Colby to see the spine surgeon on Friday. Hoping to get the post-surgery all-clear from him. Can't imagine why he wouldn't. That sweet boy is something else. Takes a licking and keeps on ticking. Because of him I want to do more, to do better. People say I'm “amazing” for what I do to take care of him. Not really. He's the amazing one. He's strong, determined, adorable and takes every adversity in his life and somehow just handles it. With humor and extreme cuteness, I might add. I simply follow his lead. So lucky to be that child's mama! Thankful every day!