LOTS ON MY MIND. HERE'S SOME OF IT.

THURSDAY was Turkey Day. We rushed/hurried to get ready by 9 a.m. because that's when my dad wanted to leave. (Seriously Dad, do you know what I have to do to get Colby and me up and ready that early?) Now he knows I'm not crazy, as the van sputtered/jumped a couple times on the way up and a lot on the way back. So yep, van is going back in the shop and is NOT coming back this time until it's fixed. There were 7 of us for Thanksgiving dinner, and as always it was totally delicious. You make think you know someone who makes the world's best stuffing, but sorry, you don’t. My Aunt Donna has that title. I had 3 helpings of it just to make sure! And there was my fabulous carrot cake for dessert (pumpkin pie, schmunkin pie, yuck.) Then we had to rush/hurry to leave at 4:30 because Dad wanted to get home before dark. I don't blame him, especially with the van acting all stupid, but I wished we could've stayed and visited longer. I'm so mad at myself. Took my camera and didn't take 1 single picture. Bad mama!

FRIDAY was a lazy day for Colby and me. We hung out in our pj's all dang day. I wouldn't have put on normal clothes except for we had a nurse coming at 4:00. There was a Spongebob marathon Nickelodeon, so you know Colby was in heaven. I did manage to do some laundry at least, along with stuffing myself with leftover turkey, stuffing, orange salad and carrot cake. Colby's nurse and I worked 2.5 hours in his room getting things better arranged/organized. It's really starting to shape up in there. Looking forward to getting his TV mounted and get that furniture out of here. There is no room! His tall storage wardrobe is shoved in my room and his dresser is sticking out in the hallway for the time being. Can you say crammed and cluttered apartment?!

SATURDAY I worked at the hospital. Working there on the weekends is great, very quiet and I can get a lot done. Night nurse got here at 4:00. We sat Colby up in his chair and he used his eye gaze. The funniest thing he said was "I know I am delicious." OMG I about fell off the couch laughing when he made that sentence. That kid absolutely cracks me up! Then we gave Colby a bath. My BFF Pam called and said hey, we're going to Bearno's, come on over. And guess what?! I went! Just like that. Do you know the last time I was able to do something spur of the moment? Oh IDK been at least 10 years, I can tell you that for sure. I was home by 10:00, but had a good time nonetheless, even if I looked like a big goober still wearing my scrubs.

TODAY has been weird. Around 4 a.m. I was awakened by Colby's pulse/ox alarm. Shot up out of bed to check it out. It was his heart rate, not his oxygen. Huh? It got as high at 140. I didn't know what the crap was going on. I tried all my tricks. Dry slobber rag. Changed his diaper. Made sure he wasn't too hot. Took his temp, no fever. Suctioned his mouth and trach. Curled up in bed with him. Heart rate still up. Oh great. Gave him some Motrin and it finally started to get better. We ended up going back to bed around 6 a.m. He's had a high heart rate off and on all day. Have had to give Motrin 3 times. He had some diarrhea earlier so maybe he was having stomach cramps/issues. I'll be keeping a very close eye on him tonight. Hopefully he can go to school tomorrow. I went to Mass, always one of my favorite weekly activities. Also watched my Colts and Hoosiers win, another favorite activity of mine.

TONIGHT there is a very special girl on my mind who holds a very special place in my heart. She's sweet, sassy and funny as all get out. She is having surgery tomorrow. I'm praying, praying, praying that all goes well and am sending warm hugs and get well wishes her way. If you don't mind, will you please do the same? Any and all good thoughts and energy is much appreciated. Thank you. 

TURKEY DAY PLANS, WHO NEEDS 'EM?!

Who cleaned the apartment (well, a lick and a promise), made a 3-layer carrot cake with glaze, got Colby up (including trach care, feeding and range of motion exercises) all before noon? That would be me, super mama! It's okay, you can bask in my awesomeness, I'm used to it. This morning I had the timer set on the stove for the cakes, then had the stopwatch running on my cell phone for the IPV cycles with Colby's cough treatment, all the while getting phone calls and texts. It was domestic chaos, and I was loving every crazy second of it. Hanging out with Colby, cooking in the kitchen, I was in my element. Still have to frost the cake and make the orange salad for Turkey Day. Of course I also have to go Krogering to get the orange salad ingredients. Woopsie, forgot those items on my grocery list when I went to the store, just 3 freakin' days ago.

So the good news is Colby's shelving system is installed and it is fabulous, wonderful, super-duper, everything I wanted it to be. The bad news is it was a complete cluster…mess around here on Sunday. I'm not sure why the guy wanted to install the shelves on Sunday, but he did. Heck I don't care, just get it done. I was told 2 weeks ago by the owner/sales dude when this appointment was set up that the install dude would be here between 9:30 and 10:00. Cool. So I get Colby up at 7:30 on a Sunday morning, drag his butt out to the couch by 9:00, then we sit. And sit. And wait. And wait. No install guy. Long story short, he chose to do another job first and didn't get to the apartment until 3:40 p.m. Then he was here until 11:00 that night putting up the shelves! Can you imagine how pissed, how really, really pissed I was by the time he left?! Colby had to stay on the couch that night and there we were with all his equipment setting around on the floor. So frustrating! But I love the shelves. Love, love the shelves. Don't have them arranged exactly how I want, but it's so much better than it was getting that big furniture out of Colby's room. Still need to steam clean Colby's carpet and also get a swing arm/mount for Colby's TV. Right now he's having to watch his little portable DVD. I think Santa is bringing the TV mount early.

The plan for us for Thanksgiving was the same as it has been for the last couple of years. Colby had school Monday and Tuesday. We were going to leave Tuesday after school and go to my aunt and uncle's for a few days. I love spending time with my aunt, getting in the kitchen with her and cooking. We were going to come back Friday because I'm working this Saturday at the hospital. Yep, that was the plan. But anyone who knows us knows our plans often get changed, whether we like it or not. The van is still not 100% fixed I don't think. Nobody can find anything wrong with it, but trust me, it's not running exactly the way it should. So there was that to think about. Then I get a call from Colby's nurse at school yesterday. He had a blood/mucous clog in his trach and they had to do an emergency trach change. Well, that was all she wrote for me. No way was I going to travel with Colby, alone, 1.5 hours away, with a van that may or may not be running right, hoping and praying that we got there without Colby's trach needing attention again. Couldn't do it. So I told my aunt we would just come up for the day on Thanksgiving and that way Dad could travel with us. I hated doing that. Absolutely hated it. Had to have a little pity party/cry fit that we weren't able to go. Not to mention that I already had the van 3/4 packed. Grrr. Sigh. But eventually I decided it is what it is. The bottom line is Colby and I will be celebrating Turkey Day with our family. I'm thankful for that, even though it's not how I originally planned. If it's one thing SMA has taught me, it's flexibility in that the plans you planned may end up changing, and you can plan on making a new plan to the plan.

Colby is sitting up in his chair watching some TV. He just got done with eye gaze. He actually went to the medical page and said he needed trach suctioning. That's so great! I went over and immediately suctioned his trach. He also said all kinds of other goofy stuff, but when he specifically asks for something to meet his needs, he's going to get it from Mama. Time to put the cream cheese frosting on the carrot cake. Going to try to get it all on the cake and not in my belly. Not making any promises though, haha.

NOT A LOT GOING ON, AND I'M LOVING IT

Colby and I are having a super lazy, laid back kind of day, and honestly I'm loving it. Dad came over early and picked up the van. If you remember, there are 2 things wrong with it, the lift sometimes wouldn't go down and frequently, not all the time, there's a sputtering when you're driving. Well, we've made some progress. Dad took the van to Superior and the lift is now fixed. He said the van also finally did the sputtering thing when he was driving it. So, he's going to keep it for a few days. I just keep saying, please don't be the transmission, please don't be the transmission. I don't know crap from apple butter about vehicles, but I do know transmission problems are expensive to fix. So please don't let it be the transmission! Hoping it gets fixed by Tuesday afternoon so we can go out of town for T-giving.

Mom came over earlier today and helped me give my stinky kid a bath. Colby was working on his eye gaze earlier. He kept going to the calibration page, then said Spongebob 3 times in a row, so I put it up and let him watch what he wanted. Can't believe still, after all these years, the attraction Colby has for that goofy yellow sponge who lives in a pineapple under the sea! He started watching it when we were in New Jersey for Colby's g-tube surgery, March 2003, and he has never waivered from it, ever! I tried to get him to watch Toy Story today for a while, but nope, he wanted nothing to do with it.

Colby had a darn good week at school again, with the exception of one really bad oxygen drop. But it was over quickly, no trach change necessary, and he was able to stay at school the rest of the day. Just goes to show, you always have to be on your toes with an SMA kiddo. You never know when a little plug or a little chokey-choke will come along. And when it does, you'd better be ready. The nurse said Colby's oxygen got to 37 and that he was turning blue before she could get his trach cleared out with cough treatments and suctioning. But she's an excellent nurse and is diligent in her care for Colby. Actually she's probably more alert and ready for an emergency than I would be if I was with him at school. So I don't think she did anything wrong, it was just a freak thing. He's been doing great taking windows off his vent. Did one for 1 hour 15 minutes today. What a stud he is!

Well, that sums up our exciting lives, haha. I've been back on an exercise kick lately. So after Colby's IPV and cough treatment at 3:00, I'm going to do an aerobics tape. We have a nurse tonight. I have big plans to go Krogering. I think we're pretty much ready for the shelving dudes to come over on Sunday. Colby's daddy came over last night and got the biggest pieces of furniture out. Ready to get that task done and over with. Then on to van shopping we shall go! Bye for now.

MID-WEEK UPDATE - YOU KNOW YOU WANT IT

What happened to the beautiful weather?! It seems to be long gone now. Had to get Colby on the bus in the rain yesterday, which is one of my very least favorite things to do, like, ever. Luckily it wasn't pouring, not too bad. So far Colby is having a great week at school. He's using his eye gaze like crazy. Last night we set it up for him and he said, "I color some ugly things." OMG I was cracking up. Where does he come up with this stuff?! Today in speech therapy he said, "favorite photo album." Again, WTH, don't ask me. His speech therapist said well Colby we don't have a photo album for you, and Colby's response to her was "we should." So yep, you guessed it, I'll be out the next couple of days finding him a small photo album and filling it with some pics for Colby. He also said, "I think about books." Guess I know what to tell Santa to get Colby for Christmas. Then he said, "awesome Colby." Ha, my kid have a self-esteem problem, not hardly. Tomorrow he has make up school pictures. The pics they took of him the first time absolutely sucked. The glare on his glasses was so bad you couldn't even see his eyes. And yes, I wrote a note to the school and let them know about it. Hoping tomorrow's photo shoot goes better.

Listen to my words, all the mail is caught up around here! How many times have you ever heard me say that, uhhhh, never! I don't care that we'll get more mail tomorrow. TODAY it's caught up, organized, filed, dealt with, etc. Makes me warm and fuzzy all over. I also started doing some stuff in Colby's room in preparation for the shelving system to be installed this weekend. Started out small, got his bookcase and toy box cleaned out. So I guess we'll just move Colby into my room for a couple of days. Slumber party!

Many people I know are doing this 30 days of thankful thing where you name each day something you're thankful for. Guess I'm about 13 days behind, but you know something I'm thankful for? Colby's nurses. Bet you thought you'd never hear me say that, huh? When Colby came home from his trach surgery back in June, I absolutely hated the idea of having a nurse up in here all the time. But I have to admit, they're great. I think we're very lucky in that we have experienced, dependable, easy-to-get-along-with nurses. Colby has 4 nurses that take care of him and I like all of them. Can you believe it? Also really liking the nursing schedule. It's a nice combination of having some time for just Colby and me, and getting extra help when needed.

Guess that's about all that's going on around here. The poor hermit crab (no, we never named it) hadn't eaten in two days. When I cleaned house last time, I moved the crab supplies. Sunday I cleaned out his cage and couldn't find the supplies anywhere. Found them tonight finally, and he's still kicking, so I think he/she survived. (How do you tell if a hermit crab is male or female, I must ask?) Off to bed, more at a later time and date. Mama out.

HAVING A GREAT WEEKEND

"Good morning world, and all who inhabit it!" That's one of my favorite SpongeBob quotes. Going to give an update, then start getting kid up for the day.

The weather has been gorgeous the last couple of days. I had been kicking around the idea of taking Colby to the zoo. We had a day nurse, so we had someone to go with us (poor thing, she had to push the wagon with ALL of Colby's equipment). Plus I had 3 free passes, so I thought yeah, let's do it. Colby's nurse got here at 9:00 and we worked together to get Colby ready. We went early and got home early, thank goodness. By the time we were leaving I couldn't believe how long the ticket line was. Going to the zoo is not one of Colby's favorite things to do. He never has been that into it, and yesterday was not exception. It went like this at most exhibits: "Oh Colby, look at the polar bear doing a back flip in the water! Hey Colby, there's a large polar bear down there if you would care to look. Colby, open your eyes. Colby Michael, stop looking up at the sky, at the little boy next to you, and look at the gosh damn polar bear!" But I think he was happy just getting out of the apartment and enjoying the weather. I've made a page on his eye gaze about the zoo. I'm hoping he'll tell me what his favorite animal is. Probably not polar bears, haha.

I've been working diligently on the mountain of mail around here. Actually it's not really a mountain anymore, more like a small mound. I got up early Friday and worked on it a little over an hour. Threw out a buttload of stuff. Then my sweet mama came over and helped me do some filing. We cleaned out a bunch of Colby's old files to make room for new ones. She labeled the folders and kept me on task, never an easy chore. I'm fairly confident Colby's paperwork is caught up for now. I'll work on my stuff soon. Absolutely hate paperwork/mail with a passion.

Van update. It still isn't running well. You'll be driving along, then it will "sputter" then drive along fine again. Colby's nurse said she would describe it more as a "jump". Regardless, it ain't right!! No rhyme or reason to when it happens. It happens when I'm on the interstate and just driving around town. Dad came over to drive it and see what he thought. He drove the van out to Superior so they could look at the wheelchair lift, which also happens to be acting up on the van. Dad comes back and says the van didn't act up one time on the way out there or back. Are you freakin' kidding me?! I'm not crazy. Well, I am, but not about this. I know the van is acting up. The good news is the lift can be fixed for about $300. So we're going to fix the lift for now. Not sure what we're doing about the sputtering. Guess we'll see if it has just magically gone away.

Time to get that sweet boy of mine up for the day. His daddy will be here for his visit at 10:00. I'll get out and go for a long walk, trying to get back on the exercise kick. Also need to pick up a prescription and of course I need to go to Kroger, because for some reason, my life is not complete unless I go Krogering every other day or so. Bye for now.

JUST A LIL OLE UPDATE FROM LIL OLE ME

Glad to report a good week around here. Colby was off school Monday and Tuesday. Of course Tuesday was Election Day. Not really sure why he was off Monday also, but whatev. I woke up early, around 6:00, and started cleaning, cleaning, cleaning. Still had only half of my summer and winter clothes switched out, but that task is done now. Monday we had a nurse during the day. We gave him a haircut and bath. Colby had a bunch of supplies ordered. The apartment was really dirty, so it got a good scrubbing. Tuesday Colby and I took it easy, hung out around here. My mom came over and stayed with him so I could go vote. He's been doing great on his eye gaze. He's really exploring through the pages/options. He keeps saying things like "I could, could I" or something totally odd like "photo album". Hilarious. Then he'll go to the clothing page and say "jeans". One time I was in the kitchen and I heard him choose "bowling shoes". Really, Colby? WTH? Then one day he said "change me". Finally!! This is the kind of stuff I want Colby to say. What he needs, what he wants, etc. I kicked it into high gear. I said you want changed, by golly you'll get changed. He really wasn't that wet or dirty, but he said change me, so I changed him.  

Colby's numbers (oxygen saturation and heart rate) have been excellent the last couple days. I mean, like, kickass excellent. He's been able to stay off his vent for over an hour. Today he used his PMV for over an hour, and he's not a fan of that thing. He had an excellent day at school. I had to work. So nice not to get those Colby-is-having-trouble-breathing phone calls. He was due for a trach change today. I handled it with ease and precision, of course. Ain't nothing but a thing now.

Guess that's it for now on our end. Colby has school tomorrow, and I have some errands I need to run. Talked to the shelving system dude and not this weekend, but next weekend we're getting the shelving installed in Colby's room. There's a lot of work to be done in his room between now and then. Then as soon as that's done, the van shopping will start. Good thing, because the lift in the van is being extremely uncooperative lately. I think the hydraulics are going out in it again, and I'm just not paying to have it replaced. Time to replace the Terdmobile. Can't believe I'm saying that, but yeah, it's time.

NOTHING AND NOWHERE

That's exactly what I want to do and where I want to go tomorrow. Been sort of crazy and nutty around here for the last couple of weeks, so a lazy Friday is in order for us. Yesterday was Halloween of course. I wasn't thrilled with his costume choice, but I must admit Colby was right. He made an awesome zombie! Now, when you have an SMA child you can't just buy any old costume and think it'll work. Oh heck no, nothing is ever that easy here in SMAville. One-piece costumes are a no-go. Masks are usually a no-go. Bulky, heavy costumes are a no-go, etc. This year's getup was truly a joint effort. Colby said he wanted to be a zombie. His daddy got the costume. Colby's nurse and I did the zombie makeup. They had a big party at his school, complete with trick-or-treating at each of the classrooms. The staff really work hard to make it special for the kids. The office staff dressed as the Scooby-Doo gang, good stuff. When Colby got home from school, we did our normal routine, eat at 2:00, IPV and cough treatment at 3:00, then hit the road at 4:00. Went to Lexington and went trick-or-treating with Colby's friend Dani. Had a great time! Their neighbors were the best. So sweet to the kiddos and they were handing out regular-sized candy bars! And lots of them! None of those sissy fun size or bite size. I would call it another successful Halloween. I can't give my kid a big fancy bedroom with a ceiling track lift system and roll-in shower. But by golly I can give him FUN and give him some wonderful memories.

I was worried about Colby going to school today. Okay, I worry about him going to school every day, but today especially. He fell asleep on the ride home last night and I thought he was just going to be too darn tired to make it through his school day. No problems, he did just fine. When his nurse gets here we're going to give him a bath, then he's going to bed early whether he likes it or not. I'm super psyched because the CMA's are on tonight. Looking forward to watching.

Hey, guess what I'm doing? Laundry. Yeah baby, the washer is fixed. Tonight agenda is to put away the clean clothes I washed when I was over at my mom's. Yep, still haven't gotten around to that. Also going to do at least 1 more load of laundry. Today is the 1st day of the month, so that means changing out Colby's tubing, filters, etc on all his equipment. Before he left for school this morning I did the backup suction machine and cough assist. That leaves both Trilogy machines, humidifier, IPV, suction and cough assist in Colby's room. Dang, the nurse tonight is going to earn her pay! Speaking of laundry, it's spinning out and needs to be put in the dryer. One load down, one to go. Hope everyone had a safe and happy Halloween. FYI, Turkey Day is only 21 days from today. Holy freakin' crap where does the time go?!