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!

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!

 

COLBY UPDATE AND FUNDRAISING UPDATE - Don't forget you need a new spatula or cookie sheet!

It's been a while since I've blogged, I know. I don't like going over a week without blogging, and you know exactly what I'm going to say. We've been busy, really busy. Hey, it's true, really true. So let's get caught up on all things Amy and Colby, shall we?

Starting with Colby, of course. He's doing great! Last week we had appts at Cincinnati Children's. These were on the calendar months before he got sick recently. Went up on Tuesday. First we saw Pulmonary. They tested the pressures and leak in Colby's trach, putting various amounts of water in his cuff. Turns out he was losing a lot of pressure, meaning he wasn't getting the total benefit of his vent settings. The compromise is, we put as much water in the cuff that still allows Colby to verbalize, 2 mL seems to do nicely. The pulmonologist thought Colby looked great. He said hey, if you want to send him back to school, okay by me. Then off to Neurology. We saw the dietitian. She thinks Colby needs more protein in his diet. I just did a major dietary overhaul to Colby's formula recipe back in May. So I don't know if I agree with her or not. As soon as I have some time, I'll sit down and reevaluate. The neurologist thought Colby looked great, too. Dad, Colby and I spent the night up there because Colby then had an ophthalmology appt on Wed morning. His eyes are fine, his prescription remains unchanged. Love getting those good reports. They make the long, tiring, worrisome trip much easier to handle. We were all simply exhausted by the time we got home Wednesday afternoon, 3:00ish. Took a whole day to unpack, reorganized and rested. Next week we go see the spine surgeon for a post-surgery follow up. That'll be a much easier trip, up and back in one day. And I know we'll get a good report then, too, because let's face it, my sweet boy is a rock star stud!

Yesterday was Colby's first day back to school since mid-September. Yikes! He seemed fine and excited to get back to school. I was a nervous wreck. And in typical kickass Colby fashion, he did great. I stayed home and cleaned house while he was gone, along with the help of my sweet, wonderful mama. This place was super gross dirty. Hadn't been cleaned really well since we both got sick. Can you say nasty?! But it' sparkly clean now. So nice to get one chore completely done and off the to-do list. I've changed Colby's school schedule. He'll be going on Mon, Wed, Thurs and Fri now. Tuesdays we're playing hooky from school so we can take Colby swimming. It was just too much trying to get it all coordinated with him going to school on Tuesdays. Hey, don't judge me. Just trying to figure out what's best for all parties involved. And in my humble opinion, which after all is the opinion that matters, we're all better off if Colby doesn't go to school on Tuesdays. End of story.

Let's talk fundraising! THANK YOU to all who attended the Pampered Chef cooking show last week. I was unable to go, but hear it went great. There were about 10 people in attendance and the sales are rolling in. If you haven't placed your order yet, THERE'S STILL TIME! Orders need to be in by the end of the day Thursday, October 30. Here is the link to order online: http://tinyurl.com/ColbyRussSMA. Colby and I will receive 25% of the sales from this fundraiser. That's a significant amount of change for our “get-out-of-this-tiny-apartment-and-into-a-house” fund. The Pampered Chef special for October is 20% off all stoneware and metal bake ware. That's a heck of a sale! Ask anyone, they'll tell you, Pampered Chef stones and bake ware are fabulous and really are must-haves for your cooking needs. Everyone should have some Pampered Chef in their kitchen - it's wonderful, quality stuff. Just sayin'.

Better get going. Want to get my shower before the nurse gets here at 8:00. I have a hair cut appt today. Then we'll take Colby swimming. Then Colby will need a bath to get the salt water off. School pictures are tomorrow, and at this point, I have no idea what he's wearing. Might also trim up his hair a little. It's looking a little ratty. And oh yeah, I'm going in to work a few hours tonight. We're super busy at the hospital. Imagine that, a hospital really busy during cold and flu season?! Okay, there's your update for now. Must get busy with our Tuesday. More soon, it won't be a week before I blog again, I promise.

FUNDRAISER INFO - Who needs a skillet??

Our Next Get-a-House Fundraiser

PAMPERED CHEF

Profits from this fundraiser will benefit our "we-have-outgrown-our-tiny-apartment-and need-a-handicap-accessible-home" fund. In case you are reading this blog for the first time, here is our story:

Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 at four months of age. Although he had a life expectancy of 2 years, Colby just celebrated his 12^th birthday in July. He is trach/vent dependent and g-tube dependent, along with requiring a wheelchair for mobility. Colby requires various braces and supports to help with contractures and assist in positioning. He is nonverbal but currently uses a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist at Cincinnati Children’s Hospital. Colby had spinal fusion surgery in June, requiring a 16-day hospital stay. Colby also had a recent respiratory illness and spent 11 days at Cincinnati Children's.

Colby's mom, Amy, is a single parent. She works part time so she can be available for Colby’s hands-on care and appointments.

This fundraiser is designated to assist in the purchase of a house that can be made accessible for Colby.  Profits will be 25% of all purchases. Also for every cooking show booked – an additional $5.00 will be added to the proceeds.

OCTOBER PAMPERED CHEF SPECIAL:

ALL STONEWARE AND METAL BAKEWARE 20% OFF

Your family and friends may shop online at:  http://tinyurl.com/ColbyRussSMA

All deliveries in the local Kentuckiana area will be provided. If you wish to purchase and live outside the area, please select direct shipping and your order will be sent directly to you. This will allow everyone to share this fundraiser with all family and friends.

If you would prefer – you may contact Candy Fox, Consultant with Pampered Chef, at 502-445-0027 to place your order via phone. Her e-mail is xofden@aol.com if you want to send her your order that way or have any specific Pampered Chef questions. Payment methods include Visa, Mastercard, Discover and American Express. Make checks payable to Candy Fox. 

All orders are due by October 31, 2014

From Amy:

*I would like to thank everyone who has supported us and our fundraisers in the past. Our recent Origami Owl fundraiser profited around $250 for our house fund. Slowly but surely, we will reach our goal!

**I would also like to give a special shout out thanks to my friends at my old job for organizing this Pampered Chef fundraiser. I haven't had to do much for it except spread the word. Thanks GCCS gang. Love ya bunches.

MUCH NEEDED REST AND NORMALCY

It's been 8 days since we've been home from the hospital, and I feel we've finally gotten around to our "normal" routine. Saturday night was the last night I had to get up and do a respiratory treatment at 2AM. Colby is also finished with his antibiotics. And I must brag a bit and say, Colby is doing very well. So nice to hear the whoosh-whoosh-whoosh of clear lungs instead of the crackles and rubs we heard for over two weeks. Again, let me just say how incredibly happy we are to be out of that hospital and back home. I appreciate all that Cincinnati Children's did for Colby. The nurses and respiratory therapists were all, for the most part, pretty darn good. I didn't have to throw any big fits to get something fixed. But I'm so glad to be out of that hospital, you have no idea. I'm sure Colby is too. After all, he was the one with the illness.

There are two things I've noticed with Colby's new vent mode and settings. #1-his heart rate is lower. Much lower than it used to be. I guess that's a good thing? His heart isn't having to work as hard and he's more comfortable. #2-Colby can't jabber and make noises like he could before. He still jabbers but it's not nearly as loud. Almost sounds like he has a sore throat. I hate this. Absolutely hate it. I want to run back there and put the vent setting back where they were. But that's not the answer, so we'll all have to get used to his new, not-so-loud, hoarse jabbers. Good God, SMA sucks so much there are no words to describe it.  

Monday the nurse and I took Colby to look for Halloween costumes. If you know us at all, we take our dressing up for Halloween pretty darn seriously. So we have Colby's picked out. And no, I'm not telling, it's a surprise. Now I have to decide if I'm going to dress up or not. I've been invited to two Halloween parties, on different weekends, and guess what? No nursing coverage for either night. That blows. But I could dress up and go to school with Colby the day they have trick-or-treating. That's what I did last year, just tagged along with Colby and his nurse. Can't decide yet.

Monday night I hit a wall. The "I've been stressed, worried, and have missed way too much sleep" wall. It was 9:30PM and I honestly couldn't function. I was so, so, so, so tired. I told the nurse, I have to get some sleep. She said no problem, she would finish tucking in Colby. I swear I got ready for bed and was zonked completely out by 9:45. Slept until Colby's feeding pump went off at 7AM the next morning. Man, did I ever need that sleep.

Tuesday we took Colby swimming for the first time since I don't know when. He loved it. He looked happy and content floating around in the water. Taking him swimming is a big pain in the patootey, but very worth it. Then when the night nurse got here we gave him a bath to get all the salt water off of him. Tuesday it was his night to zonk out. By the time I walked the nurse to the door, chatted with her a couple of minutes, and went back in to tuck in Colby, he was already snoozing away. Play hard, sleep hard, guess that's our motto.

I have struggled back and forth and back and forth on whether or not to send Colby back to school or put him on home/hospital instruction for a while. I know when we were at Cincy I said home/hospital all the way. But of course I'm going to think that when he's in the middle of an illness! I was freaking out just a tad. This has been a very difficult decision. Finally, I asked Colby, do you want to go back to school, yes or no, holding out my hands like always so he can use his eyes and answer. He picked YES! I was shocked! So shocked I asked him 3 times, and each time his answer was yes. The nurse said, how many times are you going to ask Colby that? My answer was, as many times as it takes until I get the answer I want, haha. But I asked him again this morning, and he definitely said YES to going back to school. So, Mr. ColbyRuss BigBoyPants is returning to school Monday, October 27. Final answer. I think.Unless I freak out and change my mind between now and then.

This blog entry is getting lengthy so I'll wrap it up for now. Next blog entry will be to tell you all about the Pampered Chef fundraiser we're having to fatten up that "get Amy and Colby a house and out of their tiny apartment" fund. Bye for now. Realize your blessings. Count them. Be thankful for them. Should make you smile, and smiling is gooooood.

DID I MENTION WE'RE SO VERY GLAD TO BE HOME?!?!

Good morning world and all who inhabit it! Yes, that is in fact, a Spongebob quote. But hey, if the shoe fits. We are continuing to slooooooowly get back to normal around here. Colby is staying on his extra medications - Xopenex inhalant, hypertonic saline, Tobramycin inhalant and Bactrim through Sunday. We're still doing respiratory treatments every 4 hours during the day and every 6 hours through the night (so we can get some freakin' rest). Then maybe, just maybe, on Monday we can do our normal routine around here. We've been building up an arsenal of medications to use in case either of us starts to get sick again. The pulmonologist prescribed 2 doses of Tamiflu. I'm also going to start taking Emergen-C. We have Colby's leftover Cipro drops should we need them. We'll also have leftover doses of the hypertonic saline and Tobramycin inhalant should Colby start to show "sicky" symptoms. But that's not going to happen, right? Neither of us is getting sick again this fall/winter, right? Great googly moogly, I certainly hope not. It's just been downright shitty around here since mid-September. But we're both better now and ready to get on with whatever it is we need to get on with.  

A good indicator of how Colby is feeling is his ability to sit up in his wheelchair. Yesterday was the first time since September 26 that Colby sat up. I would have been pleased with 20 minutes or so. But Colby, being the rock star stud that he is, sat up for 52 minutes, no problem! Then his heart rate started to get a little wonky, so we laid him back down. Yep, Colby is definitely on the mend.

I have spent my days playing catch-up around here. Thursday I made around a dozen phone calls. No exaggeration. Still have three to make on Monday. Been trying to get caught up on some sleep. Yesterday I actually got a 45-minute nap while the day nurse was here. I zonked out! My bedroom is right across from the kitchen, so I had set the stove timer for 45 minutes. It went off and I was sleeping right through it. The nurse had to knock on my door and say, uh Amy, your stove is beeping.  Went through all the mail last night. With the help of the Hosparus nurse, got Colby's home/hospital papers going. Today I'm going to work on a grocery list. A good, COMPLETE grocery list where I won't be running down to Kroger every day because I forgot this or that.

Colby's nurse will be here at noon, and we're giving Mr. ColbyRuss HippiePants a much-needed hair cut and bath. He's about two weeks overdue for a cut, and his hair is looking nasty! I also need to run to the mall and pick up a couple b-day presents. Maybe try and sit Colby up again. Depends on how much time we have. Hoping for the same or better than yesterday. Also need to have a very serious discussion with Colby about Halloween costumes! We've been looking online for the last couple of weeks, but it's time to finalize the decision. What will it be this year? Frankenstein? Teenage mutant ninja turtle? Skeleton? Don't know. If he feels like it on Monday, the nurse and I may just have to run him out to Party City so we can get some ideas. As you know, we take our Halloweening very seriously around here.

Bye for now. Need to make my bed, unpack the dishwasher and make Colby's food for the day. Oh yeah, I probably ought to bathe today also. By then the nurse will be here and we'll get started on Colby's hair cut and bath. Love getting this stuff caught up and done! More soon, from my own computer in my own home, as I watch CMT on my own TV. What a wonderful thing that is, being HOME, even if it is this dumpy old apartment. Beats hanging out in that hospital room on the TCC any day, for sure!

WE ARE HOME!!!

And that's about all I have time to blog right now! We did rounds at Cincy Children's at 9:30. The team agreed he could be discharged. Somehow we were able to get an ambulance today. Usually that takes 24 hours to arrange. The discharge nurse said yep, they'll be here at noon! We started scrambling around like crazy. You'd think 2.5 hours is enough time to get us packed up and ready, but you'd be surprised at how much packing, organizing, arranging, etc there is. And breakfast, I had to have some food, dangit.

The ambulance was absolutely on time, but it took us about 45 minutes to finally get on the road. Hit a little construction on the way home, but nothing horrible. Never completely stopped traffic, thank goodness, because that makes me cray-cray. Got Colby home and into his bed about 3:00. Since then, as you can imagine, it's been crazy. Colby needed his feeding. Colby needed to be changed. Colby needed his next round of respiratory treatments. The nurse supervisor came over at 3:15 to do Colby's resumption of care. So now we can have nursing start back with us. The nurse we usually have on Wednesdays is able to work tonight. She'll be here at 6:00. When she gets here, I'll run down to Kroger and get the 4 prescriptions Colby needs to continue to completely get over this illness!

Right now I don't know whether to scratch my watch or wind my butt. Lots to do. I think it's safe to say I'm on the frazzled/practically exhausted side of life. But so thankful to be home, I could poop rainbows. Ready to get back to our "normal" lives, whatever that may mean. I have a wonderful friend bringing over white chili and cornbread for supper. Love her! One less thing I have to worry about.

Will blog again soon. Just let me get some things caught up around here. I have had time to listen to the 14 voice mail messages I had on my home phone since we've been gone. They were all Colby related, of course. Imagine that. Again, I know there were/are many, many people who care about us and were praying so hard for Colby to get better. I truly believe in the power of prayer. And the power of bronchoscopies, I believe in that also, haha.

HE BE BRONCHED

In talking to my mom last night, we saw no hurry in getting up this morning. Colby's bronchoscopy was scheduled as an add-on and was scheduled today for "some time between 7AM and 11AM." So we figured well, it'll be later in the morning. WRONG! Nurse flies in the room right before 7:00 and says Transport is on their way up to get Colby for his procedure. It's on! Holy crap on a cracker. Very well then. I jumped up and barely had time to brush teeth, take med, put in contacts and sling on brazeer. Then off to the OR we went. Mom stayed behind in the room. Brochs are simple procedures, don't take very long, and Colby has had several in his lifetime. The whole procedure was done by 9:00. The pulmonologist doing the bronch said yep, he definitely needed it. She showed me the pictures she took while down his airways. Mucous/snot everywhere! He did need it for sure. So hopefully she has washed off/suctioned out enough secretions that NOW, FINALLY, air can get moving through Colby's left lung. That will in turn make his respiratory treatments effective and we will get that lung re-inflated. They scheduled an x-ray for 11:30 this morning, and I'm very anxious to see the results from that. If there isn't some improvement at least, I'm afraid I'm going to have to have a small meltdown. Or perhaps a very large one, haven't decided. This kid has to start getting better. It's time.

That's been our morning. Super duper exciting! I'm going to head back up to the room. Check on Colby. Get my shower. Today I'm absolutely taking a nap. Didn't get one yesterday and I'm feeling it already today. Mom is here with us now, and I know she'll watch Colby very closely while I snooze.

I'll update later and let you know how Colby's day has progressed. Bye for now.

MONDAYS SUCK, THIS MONDAY IN PARTICULAR

Wow. Just wow. Today has turned out to be a real WTF kind of day, that's for sure. Colby was supposed to have a 6AM x-ray, or at least an early morning one. Someone, again, forgot to put it in as a portable x-ray, meaning they come to Colby's room and do it while he remains in his bed. That had to be worked out. The nurse was really busy this morning, so I did all of Colby's morning care. No problem. I'm used to that by now. In rounds we planned on going home tomorrow. At least that was the plan originally. So then I'm talking to my mom on the phone and dad is here with us. Basically I told Mom she should just stay home. Why come up here for less than 24 hours, right? But we had to make some arrangements because Colby needed his feeding supplies from home and I needed a prescription, both of which Mom was bringing up today. Got that worked out. Dad left to meet someone halfway to get that stuff. Oh wait, first he had to go down to the Concierge Department early today and get me a couple of things. They help you run errands, get things you need while you're here and can't leave your kid, etc. This service is a Godsend! They put your credit card number on file and charge you for the things they get for you. My phone charger bit the bullet last night. I knew it was only a matter of time, and of course it happens while we're here. Also needed stamps because I have bills to get paid, like 3 days ago. Poor Daddy, he has run around everywhere for us today. Oh wait! But it gets better.

The x-ray at 11:30ish did NOT look good. Colby's left lung is still partly deflated. Too deflated to take him home, that's for sure. We've been at this since Friday I think (my days are running together now) with no true success. We sure thought we had it licked. In rounds this morning, we were planning for discharge for tomorrow. After the x-ray, discharge cancelled. This is turning into such a crock of bullshit. So the NEW PLAN for tomorrow is to do a bronchoscopy. We're on the add-on list, which makes me nervous. Been there, done that and basically we're at the bottom of the totem pole. It's supposed to happen sometime between 7AM and 11AM. Don't know what else to do at this point. We've tried around the clock respiratory treatments, every 4 hours for days now. Also tried hypertonic saline, positioning, increased pressures on Colby's vent. So bronchoscopy is next.

I could lose it. I want to grab someone, anyone, shake and possibly throat punch them and say FIX MY KID!! You're the experts! You're one of the best hospitals in the country. FIX MY KID, AND FIX HIM NOW!! We've had wonderful nurses, doctors and respiratory therapists, but enough is enough. I want my son better. That's it. That's all I want. For my sweet boy to get better and we get home.

I decided today once we do get home, Colby is on lockdown. I'm not taking the chance of putting him, my parents, or me through this shit again. No more school for Colby until spring. Home hospital instruction it is. I'll work very hard to make sure Colby doesn't just lie in bed. I can get history books from the library. We can do lots of things on his eye gaze. He can have visits from the high school students a couple days a week like he had been doing. I'm sure if I try, I can find many ways to keep Colby entertained.

If nothing else, today has gone by very quickly. The first time I looked up it was 2PM. How time flies when your day becomes a complete clusterfuck. Time to head back upstairs and see if kid has had his 5PM feeding. I'll blog after the bronch tomorrow and let everyone know the latest. Bye for now.

MAMA NEEDS A NAP, AND FOR THE COLTS TO WIN

Continued improvement. That's the way, uh-huh uh-huh, we like it, uh-huh uh-huh. Talked to the attending doctor today. Do we have a big master plan? Not really, but here's what we're going to do today. Tweek Colby's vent settings some. Try to bring them down from when we put them up to get Colby's lung re-expanded. Take a chest x-ray in the morning. Hopefully that lung is re-inflated. Then we can start talking discharge and HOME. I swear I'm not telling anyone when we're going home this time. Last time it was such a bummer having to come back and say, nope, new plan, NOT getting discharged as we thought. Nah, I probably won't really do that. Because once we start planning for discharge I get really, really excited and it's hard to contain myself. Colby is as sweet and adorable as always. Jabbering away. Melting everyone with those beautiful brown eyes. How lucky am I to be that boy's mama?! Just want to get us back to the Ville where we belong.

Our respiratory therapist (RT) walked in last night and I thought, oh holy shit, you have GOT to be kidding me. You remember last hospital stay, I got into it with an RT? Colby was struggling and I didn't think she was moving fast or doing enough? Then I said we need to change his trach, immediately. And she said okay, but I have to call the attending. I about flipped my lid. I said you call whoever you want, I'm changing out Colby's trach NOW, get out of my way. Well, our RT last night was her. But you know what, everything was fine. I was watching her like a hawk, and she knew it. She did a very good job with Colby's treatment. We even worked together to do Colby's trach care last night. See, I can play well with others, sometimes, if absolutely necessary.   

Who has two thumbs, is tired and grumpy, and needs an attitude adjustment? This gal right here! Everyone and everything is on my nerves today. REALLY on my nerves. I know that's the wrong attitude to have. Colby is exactly where he needs to be, and the people around me are just trying to help take the best care of him possible. But I also can see us getting home soon, and once Colby reaches this "it won't be much longer" time frame, I get antsy. But then again, we had discharge planned and then Mr. Pneumonia collapsed his lung! So I need to calm myself down. Tell myself things are getting better and things really could be so much worse. To kill time yesterday, I went through the text messages on my phone. Deleted over 100 old, unnecessary texts. Today I'm going to watch football - Go Colts!! - and read my book. I started this book when Colby was having his trach surgery over 2 years ago. Probably about time I got it finished. Try not to eat my weight in sweets and comfort food. Already have fresh fruit and yogurt waiting for me for lunch.

Thanks everyone, again, for staying in touch. I really, really mean it. THANK YOU so much for caring and supporting us through this unpredictable, often not-so-fun SMA journey. I'm grateful for all the support and prayers you send us not only when Colby is in the hospital, but every day. Mwwwaaaa, big kisses.

COLBY IS BETTER CAN WE JUST GO HOME NOW, PLEEEEEEEASE??

Colby had a fabulous night and is also having a fabulous morning. I really liked our nurse and respiratory therapist last night. They made sure Colby got his feedings and respiratory treatments on time. I totally understand that not everything Colby needs can be done exactly on time by them. They have other patients. I get it. But they have to understand I run a tight ship, haha, and when Colby needs respiratory treatments every 4 hours, he is to get them every 4 hours on the dot. It's no big deal. If they aren't in here in time to do the treatments, I start them. This morning everyone disappeared on me. No nurse, CNA or parent to be found. No big deal. I did Colby's g-tube care, trach care, changed him, washed his face and brushed his teeth on my own. When I think Colby needs something, he's going to get it, whether I have assistance or not. He got his first feeding at 11:00 and he's due for a respiratory treatment at noon. Just enough time to come down and blog.

I can tell Colby is feeling much better. He is alert, not sleeping as much and jabbering LOUDLY. Very loudly, and that's even with 2 mL of water in his cuff. I told him this morning there was no doubt in my mind he was going to win the Loudest Kid on the Unit award. His oxygen levels are fantastic on room air and his heart rate is staying nice and steady. His blood pressure is up again this morning. Are you kidding me, kiddo? But that's what I expect when Colby is in the hospital. I hope the day brings more improvement and comfort to sweet boy. He needs it and certainly deserves it!

I can also tell the attending doctor and I are going to disagree on when Colby gets discharged. Now, I don't want to rush anything. Last thing I want is to take Colby home before he's ready, then him have a setback and we end up back here. But then again, we're over this place. So over it! What I thought would be an easy 3-4 day stay is now going on day #8. We need to be home. But I think the attending wants to wait and maybe get Colby a sleep study scheduled one day next week. I know he needs one. He hasn't had one in a long time, and obviously Colby's vent settings need some adjusting. He also said something about waiting until Colby's IV antibiotics were done before going home. I was quick to point out that shouldn't keep us here. Colby has a port and can get his antibiotics at home. So we'll need to get another chest x-ray to see how the collapse issue is going. The attending said he hasn't decided whether to get that tomorrow or Monday. Shit, I just want to get my sweet boy home. That's really all I want right now. Oh, and some chocolate cherry Bailey's. Can't lie, I want some of that very badly right now also.  

This weekend is Colby's fall break and we were supposed to be doing some day camping with Grandma and Grandpa Kenny. It kills me we're not getting to do that. I want to go work my job, decorate for Halloween/fall and spend time with my friends. I want Colby back home in his own bed with the nurses he's used to seeing. I debated on whether or not to bring up Colby's eye gaze. I didn't. I already had all his medical equipment, plus our overnight bags to bring with us in the ambulance. With the eye gaze you also have to bring the charge cord and the stand. Too much. So if we're going to be here another 4-5 days (the thought makes me throw up in my mouth a little) do I have Mom bring it up Monday or not? Decisions, decisions.

Trying to figure out what to do with the day so I don't go completely out of my mind cray-cray from boredom. Probably wouldn't kill me to step outside this hospital and go for a little walk. As long as I stay on the hospital campus, of course. This is not exactly the best part of town. Watch some college football I suppose. Read some of the book I brought. Give Colby lots of PT and we can read some of his Harry Potter book. Need to go through all our stuff and get it better organized. Yesterday when we thought we were going to the PICU, we were throwing stuff in bags right and left quite hurriedly, so everything is totally unorganized. Took me about 5 minutes to find my freakin' toothpaste this morning. And who knows, I may even blog again. Happy Saturday everyone. Get out and enjoy it if you can. Sure wish we could.  

THIS CHILD IS DRIVING ME CRAY-CRAY

Seriously, if you were to walk into Colby's hospital room right now, you'd never know the crap we were going through just 8 hours ago. His heart rate is perfectly normal, in the 80's and 90's. His temperature is perfectly normal, 37.0. His blood pressure is not only up, it's high again, like we're used to seeing when Colby is in the hospital. He's jabbering away, awake and alert, like hey y'all what's up. Let me just take a brief moment to shrug my shoulders, roll my eyes, and let out a ginormous sigh of relief. Don't get me wrong, I'm thankful for all of that. I just don't get this kid sometimes. Cannot figure him out. And it terrifies me how quickly he can go from good to bad, from bad to worse, from worse to shitty worse, then poof, from shitty worse to good again. I'm pretty sure when we get home I'm going to need some therapy. Seriously, after dealing with this SMA stuff for all this time, I'm probably well overdue.

So happy to report the update news is all good. The tests that have come back so far (urinalysis, blood gas, blood count) are all normal. Did I say that in my last blog? Sorry if I'm repeating. Running on fumes at this point. Colby is tolerating his feeds just fine, peeing and pooping just fine. And you know how important poop is in the TCC!

The plan from here: continue with respiratory treatments every 4 hours. Trying to get that left lung to pop open the rest of the way. Continue current antibiotics and wait for blood culture results - takes 36-48 hours. Adjust antibiotics if needed. The bronchoscopy has been put on hold for now, thank goodness. Did I blog that already also? Well anyways, just wanted to report that Colby is doing MUCH better.

There is no way I could thank each of you separately for all the wonderful calls, texts and Facebook posts. I'm sorry I haven't answered a lot of calls. Usually I'm busy with kid. He eats every 3 hours and is getting treatments every 4 hours, and I'm making sure that all stays on schedule. Plus there is changing him, turning him, talking with doctors and nurses, figuring out the next step, etc. My mom has gone home for a couple of days, and my dad is with us here now. Don't know when we'll get discharged. Can't really start talking about that now. Need to get Colby more stable and make sure none of this funny business happens again. What he went through overnight was horrible. But thank God we were here when it happened. What if we went home and his lung collapsed over the weekend? Can you say "disaster?!" Thank God the attending doctor just happened to be standing at the end of Colby's bed when Colby just happened to be getting his CoughAssist, and the doctor just happened to be paying attention and noticed Colby's left side not rising. I think we avoided even more trouble with that. So see, I can always, always, always find some good in a situation. That's because the love and support of my family and friends keeps me strong. Every time you all text or say, tell Colby we love him and are praying for him, I do. Thank you everyone. I feel like when we get home we all need to schedule a Group Hug Party. More soon.   

WHERE TO BEGIN?!?!

Were you thinking, after hearing Colby's left lung collapsed, wow I sure hope Colby's stay in the hospital is gets better from this point. Well, think again! I mean it's better now, but was awful overnight. I'm pretty sure the last 12 hours in this hospital have taken 10 years off my life. Here's why.

First of all, I didn't like our respiratory therapist last night. But let's be honest, right now I don't like anybody. Except Colby and my mama. I'm so over this hospital stay. First of all, this respiratory therapist hasn't had Colby as a patient before. Not good. Someone who knows Colby and knows if his treatment is going well should be doing his treatments overnight. And that someone would be me. I gave her a chance. His treatment was due at 8PM. At 8:05 she wasn't in Colby's room, so I started his treatment. I let her step in, and she fucked up a couple of things that I feel are very important so I was like, that's it. You gots to go. I did Colby's 12AM and 4AM treatments. I was nice about it. I just said I felt helpless and wanted to do something to help Colby, so I would prefer to do the treatments. That's a true statement also. Actually I can't complain, she's the only person assigned to Colby I haven't cared for this hospital stay. Seriously though, she could have fallen from Heaven, assigned by God himself to give Colby his treatment, and I still wasn't going to like the way she did it. Can't help it, I'm in Mama Bear mode!

As the night progressed, weird things started to happen with Colby. I noticed his heart rate was low. Very low. As in, hey kid, what's up with you low. Colby slept through both treatments, which he never does, and his heart rate dropped into the 50's. If we are home and Colby is in a deep sleep, his HR should be low 70's/high 60's. I thought that was very odd. Then his body temperature started to drop. Low. Very low. Normal temperature is 37.0 Celsius. Colby's was 35.4. Also very odd. And scary. We turned the heat up in our room and wrapped Colby in warm blankets trying to get his temperature back up. Then his blood pressure was low. Very low. This is the exact opposite as normal. Usually when Colby is in the hospital, his BP is high, due to what I assume is agitation/anxiety, along with being sick. Colby's blood pressure dropped to 87/51. They even took it manually to double check. Colby's respiratory treatments were odd, too. He wasn't coughing up anything. Nothing. There were no secretions out his nose, mouth or trach. And if you read this blog at all, you know Colby is a "slobber box" and we are constantly suctioning him, especially when he's sick. I'm just going to lay it on the line here folks, I thought Colby was going to die. As a parent, what would you start to think if your child's vital signs were slowing down? The good thing was he was maintaining his oxygen. That part was perfect. Mom and I discussed some things with the nurse. After the 87/51 BP reading, we got the docs on the phone. And then chaos ensued from there.

Around 6AM this morning, I noticed some commotion in the hallway. People were walking around at a faster pace, and it seemed more people were in the hall for that time of the morning. I was thinking oh wow, what's all the scuttlebutt? We were the scuttlebutt! The whole Medical Response Team and several people from the TCC came in and we started discussing options. Do we do the bronchoscopy on Colby? Do we transfer him to the PICU? What is causing all this mess? The doctors weren't in much of a panic, I guess because Colby's oxygen was so steady. On the insides I was shaking uncontrollably. I was terrified of what was going on with Colby. I don't wish the thoughts and feelings I was having on anybody, ever. On the outside I was keeping it together, trying to sort out all the information the doctors were throwing at me. It was agreed that Colby would stay in the TCC for now. We ordered a chest x-ray, which showed much improvement over yesterday's. They ordered every lab known to man to check for further infection. How in the world can this kid still have infection?! He's been on 5 different antibiotics in the last 2 weeks, geez!

And just like that, in typical Colby fashion, no rhyme or reason, he started to improve. His 8AM treatment was more typical. His last blood pressure reading was 117/79. His heart rate is in the 80's to 90's. Last time they took his temperature, 37.1 Celsius. Urinalysis, normal. Blood gas, normal. Blood count, normal. The bronchoscopy has been put on hold and we can feed him as usual. Unreal. Unbelievable. But I swear this is exactly what happened. The child who had me terrified for his life is now jabbering away watching Frozen like, hey Mom, what's up? I don't know whether to cry, laugh or scream.

Colby's doctors have been very patient and have spent a great deal of time talking to Mom and me about the events that occurred overnight. And the answer is...we really have no answer. They said sometimes when you bump vent pressures up as much as we did yesterday to open up Colby's lung, it sort of sends a message to the brain saying, hey, we don't have to work as hard to keep up with this body. Which might explain the slowing in some of Colby's systems. His attending said look, if Colby continues to improve, his labs come back ok, and if we never find out the answer as to why this happened, then so be it. As long as he gets better. We may never have a definite answer. My explanation is you know Colby, he does things Colby's way.   

I know this is a very long blog update, and I apologize. Just wanted to let everyone know what was going on. Plus blogging/writing seems to calm me down a bit, helps me collect the 1,742,865 thoughts running marathons through my brain. Colby is currently doing great! If you walked in his room right now, you'd never know all the shit that went on overnight. Colby, Colby, COLBY!! You big stinker! I'm going to try and get in a nap today and will blog later tonight. Hopefully reporting Colby has continued improvement. Thank you everyone who continues to stay in touch and pray for us. Right now it's much needed and much appreciated.

CAN'T BELIEVE I'M TYPING THIS

So, give us 10 hours or so, and we can really shake things up. When I last left you from Blogland, everything was on schedule for us to be discharged on Saturday morning. Not anymore. Colby hasn't had a great day. We noticed he wasn't improving at the same speed he has been. Plus he was having some trouble keeping his oxygen up. Nothing crazy, his oxygen was hanging around 93-94. Just made you stop and look at Colby like hey, what's going on with you, kiddo. The RT and I were doing Colby's afternoon respiratory treatment, and the attending doctor happened to be in our room. He said hey, Colby's chest is rising much more on the right side than on the left. Ah shit. You wouldn't notice it if you were up by Colby's chest doing his treatment. But I went back to where the doctor was standing at the foot of the bed and sure enough, the left side of Colby's chest was not rising properly during CoughAssist. Red flag. Big freakin' ugly red flag. We immediately got a chest x-ray, which shows...drumroll please...Colby's left lung is collapsed. Completely collapsed. I know, right?! I can't even believe I'm reporting this, but it's true. The doctor just came in and we talked it over. Hence, therefore, we had to come up with another plan, which is as follows:

It's safe to say we're NOT going home on Saturday. Ambulance transport has been cancelled. We've raised the pressures on Colby's vent. We'll return to doing respiratory treatments every 4 hours instead of every 6. We're hoping, praying, that these changes help "pop" that left lung open. If not, they will want to do a bronchoscopy on Colby tomorrow. In talking to the attending doctor, I said you know, some of us in the SMA world think these bronchoscopy procedures are done too often. Can you guarantee that if you do this bronch, you will find the source of the collapse (probably a big plug sitting in his lung) and be able to fix it? He said, well, no. Fantastic. Super duper. So, we're praying the extra treatments and upped pressures fix the collapse. However, knowing Colby's history, we'll probably have to go to Plan C. That would be the bronchoscopy. I don't know yet. Not knowing. It's horrible.

It's going to be a long night. Colby will be getting treatments at 8PM, midnight, 4AM and 8AM. And I'll be making sure they are done exactly on time. I'll be up assisting with every one of them. So, Colby could use a couple prayers if you have some to spare. We changed his vent mode a couple days ago. Tonight we've changed the vent settings. We're adding water to the cuff. We're increasing respiratory treatments. This needs to work. SOMETHING needs to work. Colby has been sick since September 17th and we've been in this hospital 5 days. I don't want this to drag out into some disgusting 30-something day hospital stay like we've had in the past. I'm so frustrated and I'm so sad for Colby. If anyone wants him to get better, I'm sure it's HIM. Hate seeing my sweet boy like this. I'll update as soon as I can in the morning to let you know how the night went. Bleh.

48 HOURS AND COUNTING UNTIL HOME SWEET HOME

What do we want? Discharge? When do we get it? Saturday morning! Yep, as long as Colby continues to improve and/or not get any worse, we're out of here Saturday morning. I'm not sure if we'll have an ambulance ride or not. It's doubtful. So when my dad comes up tomorrow, he will bring the van and Colby's power chair. Going to make sure we have an extra oxygen tank on hand also. We need to keep our fingers crossed that there are no traffic issues. Colby is going to struggle as it is sitting up the 100 miles from here to home. I know he's ready to go home. I don't think we're rushing it at all. He's getting better rest and tolerating his respiratory treatments so much better than he was a few days ago. But sitting up will be an issue. It always is when Colby is sick and/or recovering from an illness. Ambulance or not, we're getting this sweet boy home before he catches some other nastiness in the TCC.

Now, if you don't like or have an appreciation for cussing, then please skip over this paragraph. I'm so fucking mad at the moment I'm shaking. As soon as rounds were over this morning and it was decided Sat morning was the target date for discharge, I called our nursing agency. They informed me they had NO nursing supervisor to come out on Saturday and we couldn't have nursing until Sunday. Excuse me?! WTH did you just say?! Here's what happens. When Colby gets admitted to the hospital, he gets "discharged" from the nursing agency. Once we get home, we can't have a nurse come out and work until the nursing agency does a "resumption of care". Well, there is no one available Saturday to do that. Both the nurse supervisors will be out of town. Isn't that just fabulous? Just freaking wonderful, perfectly F-ed up fabulous? Thank God I can take care of Colby by myself. It's not that we HAVE to have a nurse on Saturday. It's the point that we NEED one. In this instance, I NEED the help, and that's not something you hear me say often! I'm tired, need to get us unpacked, check the mail, empty the fridge, etc. All that crap that needs to be done when you've been gone for a week, on top of take care of Colby, who is still getting cough treatments every 6 hours around the clock to knock out the rest of his illness. Stupid asshole nursing agency. I made it perfectly clear how I felt with them when I was on the phone with them this morning. You know I did. It's just ridiculous. Okay, needed to vent. It is what it is, and I'm going to deal with it. Sunday morning at 9AM there will be a nursing supervisor at the apartment to do a resumption of care. I'm trying to line up nursing for Sunday now.  

There's been some debate on whether or not we should or shouldn't be putting water in Colby's trach cuff. At home, we have never put anything in his cuff. We were never told to do so. But when he had his spine surgery and also with this hospital stay, they put water in his cuff. So I said okay, we need to get this straightened out so I know what in the crap to do with this cuff when we get home. They ran a NICO test on Colby's trach last night. They figure out, when Colby is sleeping, how much water needs to go in the cuff to maximize Colby's volumes, minimize his leak, etc. Basically figure out if water, and then how much water, in his trach cuff helps him breathe better. Turns out Colby needs anywhere from 2.2-2.5 mL in his trach overnight. Huh, who knew?! They are going to read over all the data from last night's NICO and tell me what to do from this point forward. Glad to be getting this done. Anything that will help Colby breathe easier/better is okie-dokie-artichokie with me.
 
That's what I know. Can't wait to get home! One week in the stinky hospital is enough. Can't wait to have my sweet boy get back to his normal funny, eye-rolling, jabbering self. Can't watch to watch football on my own dang couch and sleep in my own bed. Can't wait to see my friends, hopefully go out to dinner with some of them one day next week. Come on, Saturday morning, get us home!

WONDERFUL NEWS WEDNESDAY

Yep, Colby is moving right along. More progress in the right direction. We've bumped his oxygen down a bit more. He started at 30%, now he's at 24%. He only has to go to 21%, which is "room air" and will no longer need extra oxygenation. He would probably do fine if I went ahead and put him on 21%, but no need to rush. We've been able to stretch out his cough treatments. Instead of doing them around the clock every 4 hours, we're doing them every 6 hours. This is a great improvement and will allow Colby (and the rest of us) to get more rest. Seriously, my son is a kickass rock star stud! They have changed his Clindamycin to g-tube form instead of IV. Also the discharge nurse is working on a preauthorization for Tobramycin drops for when we get home. Apparently they are very expensive and need to be ordered from a specialty pharmacy. We also got his scheduled trach change done this morning and when I left to take a little break, Grandma was putting in a SpongeBob DVD for Colbster. I'm sure he's perfectly content with that.

We started to do a little planning for discharge. If Colby continues at this rate, we're thinking Friday or Saturday. Can you say YES, please and thank you. The only concern is transport home. We don't think insurance will approve an ambulance ride home, since Colby won't be in an "emergency" situation. That's a matter of opinion, but when it comes to insurance coverage, my opinion of course doesn't matter. So if we have to take him home in his wheelchair in the van, that will prove quite interesting. There is no way in the world he will be able to tolerate sitting up that long. We're going to try to sit him up in bed today. This will be the first time the kid has sat up in any way, shape or form since last Friday. And if you remember, that didn't go so well. I guess I'll worry about the ride home later. Right now just concentrate on Colby continuing to improve.

That's about all I know for now. My mom is here with us. She was supposed to bring up some yummy, healthy veggie soup they made, but the goofball left it at home sitting in the fridge. Dangit, Linda. Cafeteria food is expensive. My stupid, hacky cough has lessened considerably. We did a load of laundry this morning. I was down to my last pair of clean undies. Wish I could go back to the room, take a nap, and when I woke up we were home, getting back to our "normal" lives. Super thankful for this hospital, but so ready to get out of here. I guess I can't complain, though. This is the first respiratory illness Colby has had a hospital stay for since getting his trach in May 2012. Pretty impressive, sweet boy. Hopefully once we get home, we'll go another 2+ years before another hospitalization. Or 3. Or 4. Or 5 years, just sayin'.

Hope to keep the good news coming. Hope that I'm blogging from the Cincinnati Children's Hospital Family Resource Center just a couple more days. Bye for now, kiddos.