FLUFF AND NOISE

Am I crazy, or does it seem like Christmas was ages ago? It's only been 4 days. Seems like forever ago doesn't it? All the shopping, wrapping, baking, cooking, visiting, church going, partying. Then more shopping, wrapping, baking, cooking, visiting, church going, partying. Then poof, December 25 comes and goes. We had a wonderful Christmas, a wonderful week really. Let's see if I can summarize:

Last Tuesday my friend Christina and her daughters came over to meet help me wrap and bake cookies. What can I say, I get by with a little help from my friends. The girls had been wanting to meet Colby for a long time and since they were all on break, seems like the perfect time. Pretty cool to have a friend who is willing to help me finishing wrapping my gifts when she wasn't even done wrapping her own. Then the nurse and I took Colby swimming. We were the ONLY ONES at the pool. It was awesome.

I worked Christmas Eve and that night, no nurse, which was fine with me. Colby and I just hung out. We read the Bible about the birth of Jesus and other Christmas books. I let him open a couple of his gifts. Christmas was laid back, just what I wanted. I wasn't kidding when I said I wanted us to spend Christmas in our pj's. I wore my new fluffy gray and purple plaid flannel jammies and Colby wore his lounge pants and Clark Griswold Christmas vacation t-shirt. My dad came over. We did gifts, then Dad and I made lunch. Fried fish, hush puppies, mac and cheese that my friend Joni made for us (I have the BEST friends), and apple crisp. I had asked Dad to bring vanilla ice cream for the apple crisp. Well, being a typical man, he waited until CHRISTMAS DAY to get the ice cream. He seemed surprise that the grocery stores were closed. Really, Dad?! But he did manage to bring ice cream. He brought 2 Good Humor ice cream sandwiches, and he said we could just scoop the ice cream out for the crisp. I had to laugh. Can't complain, we had vanilla ice cream!

Friday I worked. Came home and sorted laundry. Over the weekend I wanted to catch up on laundry, clean out the fridge and get caught up on sleep. I did all the above. Plus we had an extra surprise. Colby had some major constipation over the weekend. We were all on poop patrol around here! Not sure how this happened. It's been well over a year since Colby has had any trouble with this (post surgery ileus doesn't count.) But it did happen and he was miserable Saturday. I won't get into all the details, but the nurses and I were pulling out our bag of tricks to help Colby out. Enemas, prune juice, suppositories, bicycling his legs, rubbing his belly, heating pad on belly, sitting him up in his chair, whatever we could think of to, you know, get things going. Sunday was a little better and today he is feeling back to normal and the plumbing seems to be back in order, too. Thank goodness. Poor kid was so uncomfortable. Hated seeing him like that.

Saturday I made a big pot of veggie soup. Not to brag, but it's pretty dang good. Surprised my body hasn't gone into shock from the vegetables. Everything I've had this month has been loaded with butter, icing, sugar and/or cream cheese, fried, a carb or delicious and fattening. Time to get my flabby hiney in gear and get back to baked fish and oatmeal. Bleh.

I was talking to Colby over Christmas about how incredibly blessed we are. I said well kid, it's like this. We are surrounded by God's love. I see it each and every day. This winter we won't be hungry, cold or lonely. You are healthy. I am healthy. The family and friends that we love and care about are healthy, I believe, for the most part. We are surrounded by loving, caring, giving, thoughtful people who always help and support us when we need it. The rest, really, is just fluff and noise. I'm looking forward to spending the next couple of days on break with Colby. He has speech and swimming tomorrow. I hope on Wednesday we get to take him to Lights Under Louisville. Thursday will be another lazy day. What is it you're supposed to make for good luck on New Year's Day? Cabbage or some sort of beans? Can't remember. Better Google that. More soon.Time to get boy tucked in with some Harry Potter. 

FIND SOME PEACE OF THE SEASON, WOULD YOU?

I got up early this morning, not because I had to but because I wanted to. Just wanted some quiet time to myself. Trying to find some of that Christmas stillness and some silent in my night. After all, that's what Christmas is supposed to be about, correct? Peace, love, joy, all that good stuff. Focusing on that, not on the gifts that haven't been wrapped or the plans that haven't been arranged. All that stuff will fall into place. Looking at my simple, beautiful tree. Drinking my coffee. Listening to Christmas music. So glad I took some extra time to do this for myself.

Colby was a stinker yesterday. We have this constant battle. At times, there is nothing he wants to do on his eye gaze except change channels and turn on the DVD player. He will do this over and over, literally hours on end. Drives me insane. I mean makes me nuts, cuckoo crazy. So I'll let him change channels, then I'll hide those buttons and say hey Colby, try something else on eye gaze. This drives the speech therapist nuts, cuckoo crazy. She says I shouldn't be hiding any of Colby's eye gaze buttons. We continue to agree to disagree on that issue. Usually Colby's cool with that, he'll piddle around and find something else to do on eye gaze. Yesterday he wasn't. I was showing him this statements page we made him. It's a whole page of complete sentences. He wouldn't have to say/request something word by word, just look at one icon for things like, "I'd like to do something different now", or "what nurse is coming tomorrow" etc. He actually threw a fit and started crying when I hid his TV remotes button. Nope, can't have that. Can't stand to see my sweet boy cry. So he got his remotes icon back. We'll see what eye gaze battle develops today.

We got a very special visit from Santa yesterday. Colby's former bus driver and her hubbie do the Santa thing every year. He's very busy making his rounds, but he took the time to come see Colby here at home, and that meant a lot to us. Turns out Santa is a U of L fan, did you know that? He told Colby he had to cheer on the Cards when they were on! If you say so, Santa, we'll do it. The little girl upstairs saw Santa leaving our apartment. Turns out she had written Santa a letter but hadn't mailed it to the North Pole yet. She was so excited to give Santa her letter. It was really sweet to see.

My BFF came over Friday after work and helped me put up my outside lights. Now, it's a pretty uncomplicated process. I have two strands of lights that run up the poles. But still, somehow I wasn't getting it done on my own. It was very sweet of her to offer to come over and help me. She's as busy as anyone else I know, yet she took the time to come help me. And THAT, seems to me, is what Christmas is also about. Carving out a little time to help/visit with someone. It meant a lot to me. She's a keeper, that crazy gal. I have an extra strand of lights. I need to put them in Colby's room and hook them up so he can turn them on and off with a micro-light switch. Oh look, another way to drive me completely insane. I know Colby. He'll turn those lights on and off 14 million times in an hour. I know, I know, it's something he CAN do, so let him. I think the best plan is let him play with lights while I get in the kitchen and bake some goodies. Let the nurse deal with it, haha.

If I'm not mistaken, I might possibly have this Christmas gift thing under control. Unless I've totally screwed up my list, presents are all bought. Not wrapped, just bought. I wrap presents on a daily basis, sometimes an hourly basis. Who is coming over today? Whose present is going out the door today? Those are the ones that get wrapped that day/hour haha. Yesterday I was wrapping the 8AM nurse's present at 7:40AM, and was wrapping the 4PM nurse's present at 2:45PM. So by 4PM today, I have to wrap that nurse's present. No problem, I got this.

Time to get a shower before the nurse gets here. Then it's off to Kroger so I can make goodies later on today. Tis the season for cookie and goodie making. That's what I absolutely love to do at Christmastime. Today I think it'll be peanut butter fudge, homemade turtles, some cookie (either snickerdoodles or monster) and something else. Maybe some form of sweet Chex mix. Then I'll wrap it up and get it out the door tomorrow. Hope everyone is keeping their sanity this holiday season. I'm staying focused on the reason for the season. It's a cliche saying, but so very true. Hope you are also able to find some moments of stillness and peace. Then get your butts in gear, only 4 days until Christmas! Doh!

THAT IS ALL. ACTUALLY, THIS IS EVERYTHING!

But the angel said to them: "There is nothing to fear. I come to bring you news of great joy which shall come to all people. For a child is born this day in Bethlehem, a Savior who is Christ the Lord. And this shall be a sign to you. You shall find the babe wrapped in swaddling clothes and lying in a manger."

ON VACA SORT OF, STILL MUCH CHRISTMAS-ING TO DO

Well, I did it, survived the last few hellish days. Worked Friday, Saturday and Sunday. Monday we took Colby to Cincy. Up at 4:45 AM for that day. Super fun times. Tuesday and today I also worked. See, told you they were sucky. Today Colby's nurse had a dr appt and didn't get here until 11:00, so Colby didn't go to school today. I didn't get to work until almost noon, meaning I didn't get home from work until 7:00. Ick. That just wasn't fun at all. But now I'm "on vacation" I suppose for a week. Don't have to go back to work until Christmas Eve. Woot woot.

Colby's appointments at Cincy went well. We met a new ENT doctor because the doctor who put in Colby's trach moved. I took recommendations from other SMA moms, and sure enough, they were right. This new ENT dr is very nice and thorough it seems. Since Colby just had a bronchoscopy done back in October, she says we can wait a year until the next one. ENT does a scope yearly just to check out the trach site, so I'm glad she said that scope was sufficient. Next appointment was GI. This is a new specialty for Colby. His g-tube has been leaking occasionally so I decided we better have it checked out. The doctor believes the changes in Colby's vent settings could be causing more pressure in his tummy. So we're going to start venting him at night (use a Farrell bag) and see if that helps. Both of the doctors complimented me on how great Colby's trach and g-tube sites look. So kudos to me for being such a Hitler when it comes to site care and kudos to the nurses for taking such good care of Colby. However, Colby does have this place on his ear. It gets better, gets worse. Gets better but never heals completely, then gets worse. You've heard me talk about this issue before. Well, it's on my last damn nerve. We've tried every special pillow and every cream and ointment everyone has recommended. Waiting for a call back from Cincy Dermatology. Colby has an endocrinology appt in January, and I'm really hoping he can see the skin peeps the same day. Just what we need, another "ology" to see at Cincy. Oh well, has to be done, so suck it up Buttercup and get it done.

Tree is up. Lights are working. Ornaments are in place. Nativity scene is set out. I'm a happy mama. Would love to get some outside lights up this weekend, but if it doesn't happen, it doesn't happen. Tomorrow I'm getting Colby on the school bus. Getting out my list, checking it twice, and away to shopping I go. Barf. I hate shopping. But I'm determined not to come home until I'm done, because there's no way I'm going to the malls this weekend. You couldn't pay me to do it. My dad offered to come over  and help the nurse get Colby off the bus so I don't have to leave whatever store I'm wandering around aimlessly.

Just took my Chex mix out of the oven. Made that for Colby's bus drivers and bus monitors. Going to give it to them tomorrow. If I can find the containers I bought to put it in, that is. Organization has not been my strong suit lately. Too much crap, too little space. Getting a house cannot come soon enough!

Quick eye gaze stories before Harry Potter time with Colby. Saturday night, after the nurse and I got those ding-dang lights on the tree, we sat Colby up in his chair. I hooked up the eye gaze. I showed Colby how to say "I want to help" and "I don't want to help" on eye gaze. Then I asked him, Colby, do you want to help me put the ornaments on the tree this year? He said "I don't." That's it, that's all he had to say about it, "I don't." Then he started doing something else on his eye gaze. Guess he told me, huh? Then after a few minutes he said his famous, "I would like something to eat." Really, Colby, you eat every 3 hours, you couldn't possibly be truly hungry. So I gave him a candy stick to suck on, he chose lemon-lime. His nurse came over to suction him and he looked at his eye gaze and said "messy." Lol. Yes, Colby, your candy stick is very messy. Today his high school buddies came to see him. On his eye gaze he said "loves snack, TV, Spongebob." Did he hit the nail on the head or what? He was totally telling the boys about himself. I wish I had been here to see it. Damn job and need for a paycheck!

Okay, it's story time with Colby. Then I have to redo my Christmas list. It has lines through it, stars by names. I have no idea why I put stars by peoples' names. Geez, Amy, get a grip. But I have to get some focus and a plan for shopping tomorrow. Not coming home until it's done. Lord help me. Hope the mall gods smile down on me tomorrow. More soon.

READY OR NOT, CHRISTMAS SEASON IS DEFINITELY HERE - eek and yeegads!!

Remember how in my last blog I said I wasn't going to get stressed about the holidays? Hahahaha, sometimes I crack myself up. We should've known better than that, right? Actually I'm not too bad. Took me a couple of days to track down our Christmas tree and decorations. Don't ask. Then this past Sunday, got the pre-lit tree in the stand and viola, not all the lights work. Boogers. Big chunky boogers. None of the top section lights work and there is half a row not working around the bottom. No problem, I thought. I'll just go ghetto this year and get two strands of lights and lay them over the existing, non-working lights. Went to Target Monday night, got lights. Tonight worked on fluffing the branches and putting on the lights, except I bought the wrong lights. Need clear lights with green wire, I bought clear lights with white wire. Trip #2 to Target will take place tomorrow night.

Colby has had a busy week. Monday at school they had a petting zoo set up in the gym. He got to pet/see turkeys, chicks, piglets, a calf and I don't even know what else. Tuesday he had speech therapy. His speech therapist had the most brilliant idea. They make these really cool LED lights (very expensive LED lights) that use a remote control to change the mode for how the lights change. Well, you can program a remote control into Colby's eye gaze. Somehow it picks up the infrared. That's how it's possible for Colby to use his eye gaze to turn on the TV, change channels, adjust the volume, etc. So we were going to program the eye gaze so that Colby could turn the super cool LED lights on and he could use his eyes to change the modes. Didn't work. We couldn't get the eye gaze to pick up the signal on the lights' remote control. Such a bummer. Those will also be returned to Target tomorrow night. I'll get some regular Christmas lights and we'll hook them up through his Powerlink so he can use a switch to turn them on and off. It's called Plan B.

Tuesday afternoon we took Colby swimming. Once we got home, we had less than 2 hours to do Colby's afternoon cough treatment, get him changed, get me changed, load up the van again, and get to the annual Hosparus Christmas party. What a wonderful, special, fantastic, beautiful party this is for Colby. And me, too! Colby got to see Santa and get his picture taken with him. Then they had arts and crafts. Colby chose to decorate a stocking. We sang Christmas carols. I asked him 3 times if he wanted to get his face painted, and 3 times he told me no. Guess he's way too cool/old for that now. Then we ate and after that, gift time! And the gifts, oh my! The parents fill out a wish list for their kid, and I swear Colby got almost every single gift idea on that list. Each child there gets a giant bag full of wrapped presents. Not that it's all about the gifts, but wow, it sure helps this mama out when he gets so much stuff at this party. And the decorations this year were over-the-top fabulous/beautiful. It was a wonderful time. Colby's eyes were dancing around and looking everywhere, and he was a total jabber butt. I know he had a good time. Seemed like everyone had a good time. If that party doesn't put the holiday spirit in you, then you have a cold heart of stone.

I started my holiday baking yesterday. Made peanut butter fudge, snickerdoodles, 3 flavors of Oreo balls and homemade turtles. Can you say yummy yummy in my tummy! I must've eaten over 10,000 calories yesterday sampling all the goodies. Today they are out the door! Gave it all out for Christmas presents. Trying to get a jump on gift giving, as next week is going to be very busy for me. Super Mama's my name, time management's my game. Just sayin'

I'm working tomorrow. Colby is going to school. He'll have to miss 3 days next week, then go to school Thursday and Friday, then off 2 weeks for Christmas break. And of course going to Target tomorrow night to do the LED light return and white wire/green wire light exchange. Giant pain in the buttocks. Next year, when we have a house, I'm getting a new tree. As big of a tree that will go in the living room. And it's going to rotate I've been wanting a rotating Christmas tree for years. Colby and I will both love it.

There you have it, a blog update. I know it's been over a week. Time just slips away sometimes. I'll post some pics soon. There is this one photo of Colby with Santa that will melt your heart. Also got Colby's school pictures back. They are really good this year. Kid was actually looking at the camera! And if and when we ever get the lights working and decorations on our tree, I'll post a pic of that, too. Bye for now.

NEW MONTH, NEW I-REFUSE-TO-GET-STRESSED ATTITUDE - We'll see how long that lasts

Zippidy doo dah I now have my laptop hooked up. Go me! I'm sitting on the couch with my computer (how cool is that?!) and Colby's nurse is in there getting him ready for bed. I'm switching the channels between CMA Country Christmas and Elf. Holy crap on a cracker, it's December! Only 24 days until Christmas, are you freaking kidding me? I've decided this year I'm giving hugs as gifts. I'm not stressing myself out. I don't do malls. Maybe on a Monday or a Tuesday during the day while Colby is at school. Maybe. First things first, need to get the tree and decorations up. Oh wait, better get these Thanksgiving decorations back in storage first.

Speaking of Thanksgiving, aka Turkey Day, ours was fabulous. Wednesday I went to my aunt's house and we spent the day cooking, and taste testing, and baking. Then Colby and I hosted on Turkey Day. We had 9 people crammed in this tiny apartment. Interesting. But we managed. I had a card table in one corner for drinks, another card table in another corner for dessert. Then I borrowed a 4-foot table for the end of my regular kitchen table, and there was enough room for all of us to eat together. The food was delicious, nothing was burnt and nothing was raw. Can't ask for more than that. We had sooooo many leftovers. I was shoving food out the door with whoever would take it. I used the last of the turkey today in a pot pie. Carrot cake is gone, too. The day was pretty laid back, but that's probably what I liked most about it. A nurse volunteered to come in and work some, 8AM to noon. I would never ask a nurse to work on a major holiday. What a blessing this was! She got Colby up and dressed while I finished up in the kitchen and dining room. So when our company got here I was able to visit instead of running around like crazy. It was very nice.

I was doing so well with eating healthy and losing some weight. Yeah well, that went to crap last week. Time to put down the fork and walk away. Need to get back to oatmeal and exercising, until Christmas gets closer anyways.

Colby is as cute and feisty as ever. He's been tearing up that eye gaze. Telling jokes, changing TV channels, doing anything but really communicating on it haha. The other night he told his nurse a joke, my favorite on his eye gaze: "what did the judge say when the skunk walked in the courtroom? Odor in the court." Then the next word he said was "enjoy." He's a mess. The other day he told his grandma and grandpa Kenny a joke: "what kind of apple is always in a bad mood? A crab apple." Then the next word he said was "laugh." I adore his sense of humor. All he goes through and he still tries to amuse others. What an amazing kid.

No school for Colby tomorrow. It's his therapy day. He'll start with speech at 10:30, then swimming at 1:00. Then a bath tomorrow night to wash all the salt off from the pool. I worked on the nursing schedule for the month and guess what? We have almost every shift covered. Actually I'll need to go back and look, do I dare say EVERY shift covered. That can't be right! That's never happened. We'll see how that all plays out. Never a dull moment with nursing that's for sure.

Okay, I'm going to call it a night. This CMA Christmas special is excellent. Want to watch some of that, then get my boy tucked in. I kind of took a "mental day" today. Didn't do anything except what absolutely had to be done. I needed that. Now it's time to get busy on a to-do list and started getting things done! Trees don't decorate themselves and cookies don't bake themselves, know what I mean? But I refuse to get bent out of shape. As the saying goes, I'm too blessed to be stressed!