Okay, so I guess Colby didn't get a 100% thumbs up report from Cincy yesterday. Actually I forgot all about this until the neurology nurse called about it today. The x-rays he had taken November 10th showed a cyst on his 9th right rib. I have no idea what it means, but the neurologist wants us to follow up with orthopedics concerning this. Other than that the reports were all great.
Getting really super-duper, fired-up, doing a happy dance excited about the magazine that will feature Colby. It will be published and available for circulation January 1, 2012. To remind you, Maggie, the cool chick starting this magazine, did a story on Colby back when she was in college. Since then, she moved back to Louisville and is a freelance photographer (who does amazing work I might add.) She and several other photographers are going to publish a magazine called THIS…is Louisville. You can go to Facebook and check it out. And ColbyRuss CelebrityPants is going to be in the 1st issue as a follow-up to the article she did on Colby when she was in college at Western. There are several other really interesting topics being covered also. You can see the original article on Maggie's website. Go to www.maggiehuber.com, click on Story. Look how tiny Colby is in these pics!
Normalcy. That's what I'm thankful for today. Got Colby up this morning, no problems. Put him on the bus for school, then I went to work at the hospital. Period, end of story, that's how we rolled. No alarms going off, no choking episodes, no dr. appointments to go to, no issues with his equipment. I mean after all, isn't that how it's supposed to work? Kid goes to school, parent goes to work. Nothing extraordinary happened today, it was UNEVENTFUL. And in our little corner of the world, that is 1 word we are extremely thankful for. Here's praying for future normal days (well our "normal" anyways) around here. I could get used to this!
Very tired. Going to bed. Glad that stinking headache finally went away. I had it most of the day until around 4:00. It was starting to make me a very grumpy mama, but all better now. Thank you Excedrin. You rocked my world today.
Wednesday, November 30, 2011
Tuesday, November 29, 2011
COLBY TO CINCY, ALL GOOD STUFF
Colby had followup appointments in Cincy today. He saw the neurologist, dietician and physical therapist. He received all good reports. This is what I'm thankful for today, SOOOO very thankful. His PT here at home has noticed over the last couple of months for some reason his left wrist and fingers are getting tighter. Both the neurologist and PT in Cincy mentioned this also, so looks like Colby will be getting some sort of wrist sling/brace to help with that. The only other thing they mentioned was that Colby is very "healthy" and he doesn't need to gain any more weight. Ha! I could have told them that, they should try lifting him. Also thankful for a safe trip with no traffic (or deer) up and back. And a special thank you to Maggie for going with us, helping with Colby's equipment and keeping us company.
My inner Betty Crocker came out again. I wanted to take some treats to the PICU since we were "in the neighborhood." So yesterday I whipped out a pan of peanut butter fudge, snickerdoodles and this other stuff, don't know the name of it. You mix Rice Chex, peanuts, pretzels and M&M's, then pour melted white chocolate bark over it, then pour it out on wax paper to cool. Let's just call it Rice Chex Addiction because it's so incredibly delicious. I boxed it all up in Christmas tins and wrote the staff in the PICU a thank you note. When I took it up to B5, i.e. Cincy Children's PICU, it was eerie. I didn't even go back to the nurses' station. Just dropped the goodies off at the waiting room desk and got the hell out of there. Too much time spent there this year. Hope they enjoy it all.
Let me catch you up on my thankfulness. Sunday I was thankful for someone else's GPS. I was trying to go north on the interstate. There was a bad wreck and the police had the ramp blocked. Perfect. You'd think after living in this city 12 years I'd know my way around, but nah, not really. So I was wondering how to get to the next exit and yippee, I noticed the car in front of me, with Illinois tags, had their GPS going. Followed that dude right through the side streets up to the next couple of interstate ramps. Good stuff :-)
Yesterday I was thankful for snickerdoodles, more specifically, snickerdoodle memories. Do you know what a snickerdoodle is? It's a cookie, dammit! I'm surprised at the people I've met who have never heard of them. You roll snickerdoodles in sugar and cinnamon before baking and they turn out to be the most perfect, chewy, delicious cookie. Growing up, my mom didn't buy a lot of Oreos or Chips Ahoy. If we wanted cookies, we made them, and we made a LOT of snickerdoodles. I had the most important job of rolling them in the cinnamon and sugar. I've always loved making them. I can picture my mama and I in the kitchen with that old cookbook out. Such great times. Everyone should be so lucky to have snickerdoodle memories like I do.
Well peeps, I'm exhausted. Taking Colby up and back to Cincy for the day is tiring. Driving home in the dark and rain was doubly tiring. I have a headache and a tummy ache from eating crappy fast food today. I'm going to take some ibuprofen, some Mylanta and hit the hay. G'nite.
My inner Betty Crocker came out again. I wanted to take some treats to the PICU since we were "in the neighborhood." So yesterday I whipped out a pan of peanut butter fudge, snickerdoodles and this other stuff, don't know the name of it. You mix Rice Chex, peanuts, pretzels and M&M's, then pour melted white chocolate bark over it, then pour it out on wax paper to cool. Let's just call it Rice Chex Addiction because it's so incredibly delicious. I boxed it all up in Christmas tins and wrote the staff in the PICU a thank you note. When I took it up to B5, i.e. Cincy Children's PICU, it was eerie. I didn't even go back to the nurses' station. Just dropped the goodies off at the waiting room desk and got the hell out of there. Too much time spent there this year. Hope they enjoy it all.
Let me catch you up on my thankfulness. Sunday I was thankful for someone else's GPS. I was trying to go north on the interstate. There was a bad wreck and the police had the ramp blocked. Perfect. You'd think after living in this city 12 years I'd know my way around, but nah, not really. So I was wondering how to get to the next exit and yippee, I noticed the car in front of me, with Illinois tags, had their GPS going. Followed that dude right through the side streets up to the next couple of interstate ramps. Good stuff :-)
Yesterday I was thankful for snickerdoodles, more specifically, snickerdoodle memories. Do you know what a snickerdoodle is? It's a cookie, dammit! I'm surprised at the people I've met who have never heard of them. You roll snickerdoodles in sugar and cinnamon before baking and they turn out to be the most perfect, chewy, delicious cookie. Growing up, my mom didn't buy a lot of Oreos or Chips Ahoy. If we wanted cookies, we made them, and we made a LOT of snickerdoodles. I had the most important job of rolling them in the cinnamon and sugar. I've always loved making them. I can picture my mama and I in the kitchen with that old cookbook out. Such great times. Everyone should be so lucky to have snickerdoodle memories like I do.
Well peeps, I'm exhausted. Taking Colby up and back to Cincy for the day is tiring. Driving home in the dark and rain was doubly tiring. I have a headache and a tummy ache from eating crappy fast food today. I'm going to take some ibuprofen, some Mylanta and hit the hay. G'nite.
Saturday, November 26, 2011
WELL, ARE YOU?!
So it's 48 hours after Thanksgiving. Are you still as thankful as you were 2 days ago? Are you still taking a moment to tell those in your life how much they mean to you and how thankful you are that they're in your life? Are you still giving thanks for various other aspects of your life - a nice home, a decent job, good health? I hope so. I think for the most part, we can all find a little something to be thankful for every day. I know there are really rough days. Been through a few myself. But usually at the end of the day, I can find SOMETHING to be thankful for, even if it's as simple as savoring the last piece of carrot cake or just surviving the 1st round of holiday craziness. I think that should be everyone's goal/resolution for the new year. Find SOMETHING good and decent in our lives to be thankful for every day. I will if you will. I'm already behind, but it's easy to get caught up. Of course I was thankful for Turkey Day on Thursday. Some family members weren't able to be with us, but for those who gathered around my aunt and uncle's table, I hope all enjoyed being together as a family. I guarantee everyone enjoyed the food. Not to brag, but my aunt and I freakin' owned Turkey Day this year. The food was some of the best I remember. I tried kale for the 1st time in my life and yeah, I think I can go another 41 years before having it again. Just not my thing, although everyone else said it was delicious. Not sure how a weed can be delicious, but what do I know?
Yesterday I was grateful for a safe trip up and back. I make fun of the Terdmobile, but I tell you, that van is a beast. Keeps right on trucking along wherever we drive it. And yes, also grateful to not come across any deer crossing the road. Would have hated that.
Today I'm thankful for a quiet day. I went and worked at the hospital, Colby's nurse stayed with him. It's always quiet when you work on the weekend. Giving double thanks I didn't break any equipment or thread spools the wrong way or spill any pills or any other goofball thing I've done around there over the years. It's been quiet around here today, too, a nice change. I've been back on the organizing/cleaning spree around here, basically because there's no where to put the dad-gone Christmas tree! If we get desperate I guess we can always just throw some lights up on the elliptical. I've been on a roll the last couple days. Throwing away crap right and left. Made 3 trips to the dumpster and taking a big load of crap (I mean treasures) to Goodwill in the next couple of days.
I'm listening to my Martina McBride Christmas CD as I type this, but I'm just not in the Christmas mood yet. I've never been able to get into Christmas while it's still November. We're still eating turkey leftovers for crap's sake. Can't we just do 1 holiday a month? We're barely unpacked from T-giving, but I guess I better snap out of it and get with the program. It'll be here before we know it. Yikes!
Think I'll wrap up for tonight. Want to get this Goodwill stuff loaded in the van, hook up Colby's feeding pump for the night, and maybe clean out the corner of the dining room area that has somehow turned into a big, fat, unorganized mess. How does that keep happening?
Good night all. Hope you had many wonderful Thanksgiving memories this past week. Don't forget your thankfulness, each and every day.
Yesterday I was grateful for a safe trip up and back. I make fun of the Terdmobile, but I tell you, that van is a beast. Keeps right on trucking along wherever we drive it. And yes, also grateful to not come across any deer crossing the road. Would have hated that.
Today I'm thankful for a quiet day. I went and worked at the hospital, Colby's nurse stayed with him. It's always quiet when you work on the weekend. Giving double thanks I didn't break any equipment or thread spools the wrong way or spill any pills or any other goofball thing I've done around there over the years. It's been quiet around here today, too, a nice change. I've been back on the organizing/cleaning spree around here, basically because there's no where to put the dad-gone Christmas tree! If we get desperate I guess we can always just throw some lights up on the elliptical. I've been on a roll the last couple days. Throwing away crap right and left. Made 3 trips to the dumpster and taking a big load of crap (I mean treasures) to Goodwill in the next couple of days.
I'm listening to my Martina McBride Christmas CD as I type this, but I'm just not in the Christmas mood yet. I've never been able to get into Christmas while it's still November. We're still eating turkey leftovers for crap's sake. Can't we just do 1 holiday a month? We're barely unpacked from T-giving, but I guess I better snap out of it and get with the program. It'll be here before we know it. Yikes!
Think I'll wrap up for tonight. Want to get this Goodwill stuff loaded in the van, hook up Colby's feeding pump for the night, and maybe clean out the corner of the dining room area that has somehow turned into a big, fat, unorganized mess. How does that keep happening?
Good night all. Hope you had many wonderful Thanksgiving memories this past week. Don't forget your thankfulness, each and every day.
Wednesday, November 23, 2011
Colby and I are out of town for T-giving, about 1.5 hours northwest of home. Feels so good to be back in INDIANA!! To get here you take 2-lane back roads, no interstate. So we were driving here and a John Mellencamp song came on. Ahhhh, good stuff, I was loving it. Just glad we didn't see any deer. I'm always paranoid about hitting a deer. But like it would matter in the terdmobile. It would probably just feel like hitting a pot hole or running over a little stick haha.
I'm not a huge fan of Thanksgiving. I mean it's okay I suppose, guess I could take or leave it. But I love coming here for a few days, AWAY from that dumpy apartment, and spending time with the fam. Love getting in the kitchen and cooking with my aunt. And cook we did!! We were in this kitchen all dang day, but the time flew by and we had a great time. No disasters either. No buttered up turkeys rolling across the floor (yeah, that happened 1 year), no using salt instead of sugar in the cake (Loretta Lynn style), and no forgotten ingredients (although my uncle has made 3 trips to the grocery in 3 days I believe). I did almost catch a dish towel on fire, I'm not used to using a gas stove. But other than that, it's gone smoothly. And just for the record, I make the world's best carrot cake. That's not bragging, just a cold hard fact.
They live in a tri-level house so you know what that means, yep, taking Colby up and down stairs. My cousin has been a huge help in getting Colby downstairs to the living room then back up to our bedroom. That's definitely something I'm thankful for right now!! They have a dog this year. His name is Bo (short for Beauregard) and he's a golden doodle. He's gorgeous. He's only 8 months old and is huge, but is very well behaved and a sweetie. Colby and I want to add golden doodle to our Christmas lists.
I've been explaining to Colby Michael over the last couple of weeks how we should give thanks each and every day, not just on the 4th Thursday of November. We're so lucky for the people in our lives who care about us, love us, help us, etc. Because let's face it, we need a lot of help! I hope he gets some concept of it.
So the rest of the fam will come over tomorrow and we'll chow down on the typical Turkey Day feast. Around here it'll be turkey, mashed taters and gravy, stuffing, corn, green beans, kale (icky), rolls, orange salad (family tradition), deviled eggs, carrot cake, pumpkin pie, appetizers and that strange cranberry sauce crap. I think that's about it. We're famous for leaving something in the fridge come dinner time and it not getting eaten. Guess we should make a list. Colby and I will pack up and head home Friday.
Black Friday. Never have, never will. Don't even ask.
Time to go snuggle up with my favorite blessing of all, sweet Colby boy.
Monday, November 21, 2011
TURKEY DAY ALREADY?! WELL ALMOST
Another great day for Colby at school! That kid is on a roll. He was even using his eye gaze, wow! It just kills me because if Colby WANTS to do or say something, he will. That's the ongoing problem we're having, getting him to WANT to use it regularly for communication and education, too, not just "play stuff" like telling knock-knock jokes, turning on the TV, etc. I hear in school today, while using his eye gaze, he found the computer functions, then the movie player, then Windows Media and then started his Spongebob movie. That lil stinker!! So obviously it's not the ability he lacks in using his eye gaze communication, it's his motivation. Kid drives me insane sometimes. But I'm pretty sure every 9-year-old drives their mama at some time or another.
I've reprinted our "out of town lists" and have started repacking. We're leaving tomorrow after Colby gets home from school and gets a bath for T-giving with the family. Can't wait to get over to INDIANA again. I think this is the 3rd year in a row we've done this, gone to my aunt and uncle's for Turkey Day. I really enjoy spending time with my aunt. She so sweet and spoils me rotten. We spend the whole day Wednesday cooking and baking. Okay, she's an excellent cook but not much of a baker. So I make the dessert and she helps (grates the carrots for my carrot cake) and then we work on the side dishes together, under her supervision of course.
I wanted to say THANK YOU to everyone who helped with the bazaar and band benefit held for Colby and me this past Saturday. It was a heckuva busy weekend. Lots of setting up, organizing, etc. My family and friends worked so hard to make it a success, which it definitely was. We had approximately a butt load of food left over. I was more than happy to donate some items to the Moose Lodge. They have done so much for us over the years, it was nice to give back to them for a change. We also donated the extra sandwich and hot dog buns to a local church that does a soup kitchen. Again, THANK YOU, THANK YOU to all who contributed in some way. I know times are tough for a lot of people right now and it makes it even more meaningful that so many gave to our benefit.
We had a big ticket item donated to us, a brand new 42-inch TV, thanks to a couple who have been extremely kind and giving to Colby and me over the years. We decided to make it a special raffle. We sold 200 tickets at $5 each. It was won by someone from the Moose. Here's how I hear the story. This guy was on his way to go birthday shopping for his wife, as her b-day was Sunday. He decided to stop at the Moose and have a beer before shopping (as many Moose men before him have done.) He bought 2 chances to win the TV, put his wife's name on the tickets, and ta-da, he won the TV! So she got a very special gift for her birthday. Pretty cool, huh?
I'm sitting here listening to my iPod. The ear bud is in my right ear and my left ear is open, ever alert for Colby's alarms. I love this thing, I could listen to it all day. I've only put my absolute favorite songs on it. Last week I downloaded some KT Oslin. Remember her from the 80's? My dad always loved her songs so I grew up listening to her. Also want to get some Maroon 5 and some Christmas tunes loaded soon.
Well it's almost midnight so I'll wrap up for now. Several people on Facebook have been posting something they're thankful for every day this month. I've enjoyed reading them as it gives you a better idea of the person they are and what's going on in their lives. We should all take note and do that EVERY day. Be thankful for the things you have, don't worry about the things you don't, right? Let the little stuff go. Oh my, if I could only practice what I preach!!
I've reprinted our "out of town lists" and have started repacking. We're leaving tomorrow after Colby gets home from school and gets a bath for T-giving with the family. Can't wait to get over to INDIANA again. I think this is the 3rd year in a row we've done this, gone to my aunt and uncle's for Turkey Day. I really enjoy spending time with my aunt. She so sweet and spoils me rotten. We spend the whole day Wednesday cooking and baking. Okay, she's an excellent cook but not much of a baker. So I make the dessert and she helps (grates the carrots for my carrot cake) and then we work on the side dishes together, under her supervision of course.
I wanted to say THANK YOU to everyone who helped with the bazaar and band benefit held for Colby and me this past Saturday. It was a heckuva busy weekend. Lots of setting up, organizing, etc. My family and friends worked so hard to make it a success, which it definitely was. We had approximately a butt load of food left over. I was more than happy to donate some items to the Moose Lodge. They have done so much for us over the years, it was nice to give back to them for a change. We also donated the extra sandwich and hot dog buns to a local church that does a soup kitchen. Again, THANK YOU, THANK YOU to all who contributed in some way. I know times are tough for a lot of people right now and it makes it even more meaningful that so many gave to our benefit.
We had a big ticket item donated to us, a brand new 42-inch TV, thanks to a couple who have been extremely kind and giving to Colby and me over the years. We decided to make it a special raffle. We sold 200 tickets at $5 each. It was won by someone from the Moose. Here's how I hear the story. This guy was on his way to go birthday shopping for his wife, as her b-day was Sunday. He decided to stop at the Moose and have a beer before shopping (as many Moose men before him have done.) He bought 2 chances to win the TV, put his wife's name on the tickets, and ta-da, he won the TV! So she got a very special gift for her birthday. Pretty cool, huh?
I'm sitting here listening to my iPod. The ear bud is in my right ear and my left ear is open, ever alert for Colby's alarms. I love this thing, I could listen to it all day. I've only put my absolute favorite songs on it. Last week I downloaded some KT Oslin. Remember her from the 80's? My dad always loved her songs so I grew up listening to her. Also want to get some Maroon 5 and some Christmas tunes loaded soon.
Well it's almost midnight so I'll wrap up for now. Several people on Facebook have been posting something they're thankful for every day this month. I've enjoyed reading them as it gives you a better idea of the person they are and what's going on in their lives. We should all take note and do that EVERY day. Be thankful for the things you have, don't worry about the things you don't, right? Let the little stuff go. Oh my, if I could only practice what I preach!!
Friday, November 18, 2011
WOW - WHAT A WEEK - AND UPCOMING WEEKEND
Colby's 1st official week back to school went smashingly well. The new nurse is going to go to school with him Mon Tues and Wed, then I'll go with him on Thur. (Love the new nurse by the way, very professional, very conscientious, she's a keeper.) By the end of the week the bus situation was worked out. Yesterday Colby's school held their big annual fundraiser, so we got the fun day at school. Just walked around and looked at the booths. I had cake for breakfast and popcorn for lunch while there, so you know I was happy. Each class was supposed to decorate either a wreath or a Christmas tree for the silent auction. There were some very creative ones. I loved the tree with laminated recipes hanging on it. I would have bid on it except then I thought WTH I never cook anymore. Colby's class made a U of L wreath. I've said it before, but I love that school! That's one of the main reasons we stay in Louisville. Actually the only reason.
So tomorrow is the big benefit my friends and family have spent weeks planning. You know, I've done some stupid shit in my lifetime. Stuff you look back on and think oh my, what was I thinking? Oh yeah, I wasn't thinking. But I'll tell you this, my choice in friends isn't one of them. Colby and I are surrounded by loving, caring, giving, sweet, wonderful friends. When you have people like that in your life, it gives you such a lift, a sense of comfort. I know if Colby and I ever really needed something, there are many friends we could call on to help. This benefit is a perfect example. When Colby was in the hospital, one of my friends said hey, you can't work right now, I'm thinking we should help you all out and organize a benefit. Then she called some of my other buddies and it has grown to be quite the event! I'm excited tomorrow to see everyone. I haven't gotten out much in the last couple months so I'm looking forward to the socializing. I've been saying all week I have 3 goals to get me through the benefit tomorrow, 1. Don't cry. Yeah, right. I'm truly overwhelmed by the generosity and thoughtfulness of others, so yeah, it's gonna happen. 2. I'm wearing new boots so the goal is don't trip over my own 2 feet and last but not least 3. Don't drink so much I get sick. (Who?! Me?! Never, wink wink.) I know many, many people worked hours and hours to do this for Colby and me. PLEASE know how much it's appreciated. I'm humbled by everyone's love and generosity. Colby and I are blessed to have so many sweet people in our lives. See, there still is good in this world. Good people ARE out there, and we're fortunate enough to share our lives with many of them.
We're spending the weekend at Mom and Kenny's. Just thought it would be easier with bridge traffic, wanting to take Colby to the benefit but not for the whole day, etc. Mom and I are taking Colby to the benefit earlier in the day. Then when he gets tired, I'll bring Mom and Colby back here, get him settled for the afternoon/evening, then go back to the benefit. Crazy few days ahead. We'll get home Sunday afternoon, unpack. Colby will go to school Mon and Tues. Then I'll repack us and we'll head to Mitchell for Turkey Day. That's a lot of packing, repacking and traveling with the Colbster. But so very worth every bit of it!
In case you need a reminder, here are the details for tomorrow's festivities: Sellersburg Moose Lodge, Saturday, November 19. 11:00 a.m. to 3:00 p.m. - bazaar with many vendors such as 31, Pampered Chef, Avon, etc. Starting at 4:30 there will be food and 3 different live bands. Throughout the day you can bid on silent auction items/baskets. Come by just to say HI if you can. Can't wait to see everyone!! Best get some sleep. Nite all.
So tomorrow is the big benefit my friends and family have spent weeks planning. You know, I've done some stupid shit in my lifetime. Stuff you look back on and think oh my, what was I thinking? Oh yeah, I wasn't thinking. But I'll tell you this, my choice in friends isn't one of them. Colby and I are surrounded by loving, caring, giving, sweet, wonderful friends. When you have people like that in your life, it gives you such a lift, a sense of comfort. I know if Colby and I ever really needed something, there are many friends we could call on to help. This benefit is a perfect example. When Colby was in the hospital, one of my friends said hey, you can't work right now, I'm thinking we should help you all out and organize a benefit. Then she called some of my other buddies and it has grown to be quite the event! I'm excited tomorrow to see everyone. I haven't gotten out much in the last couple months so I'm looking forward to the socializing. I've been saying all week I have 3 goals to get me through the benefit tomorrow, 1. Don't cry. Yeah, right. I'm truly overwhelmed by the generosity and thoughtfulness of others, so yeah, it's gonna happen. 2. I'm wearing new boots so the goal is don't trip over my own 2 feet and last but not least 3. Don't drink so much I get sick. (Who?! Me?! Never, wink wink.) I know many, many people worked hours and hours to do this for Colby and me. PLEASE know how much it's appreciated. I'm humbled by everyone's love and generosity. Colby and I are blessed to have so many sweet people in our lives. See, there still is good in this world. Good people ARE out there, and we're fortunate enough to share our lives with many of them.
We're spending the weekend at Mom and Kenny's. Just thought it would be easier with bridge traffic, wanting to take Colby to the benefit but not for the whole day, etc. Mom and I are taking Colby to the benefit earlier in the day. Then when he gets tired, I'll bring Mom and Colby back here, get him settled for the afternoon/evening, then go back to the benefit. Crazy few days ahead. We'll get home Sunday afternoon, unpack. Colby will go to school Mon and Tues. Then I'll repack us and we'll head to Mitchell for Turkey Day. That's a lot of packing, repacking and traveling with the Colbster. But so very worth every bit of it!
In case you need a reminder, here are the details for tomorrow's festivities: Sellersburg Moose Lodge, Saturday, November 19. 11:00 a.m. to 3:00 p.m. - bazaar with many vendors such as 31, Pampered Chef, Avon, etc. Starting at 4:30 there will be food and 3 different live bands. Throughout the day you can bid on silent auction items/baskets. Come by just to say HI if you can. Can't wait to see everyone!! Best get some sleep. Nite all.
Tuesday, November 15, 2011
D DAY
For us, this means Diagnosis Day in that 9 years ago today, we were told Colby had Spinal Muscular Atrophy. Huh, spinal what? Never heard of it. (Still wish I'd never heard of it if you know what I mean.) By the time the neurologist finished telling us Colby's prognosis, I was numb. I'll never forget the cold, blunt and matter of fact way he told us what he thought Colby had. Louisville hasn't exactly been blessed with an excellent crop of winner pediatric neurologist over the last couple of decades, just sayin'. Also, the "we" I'm referring to is Colby, my sister-in-law and myself. The ex was too much of a scared weenie face to go to Colby's appointment that day. The next few days after that are a bit of a blur. I do remember thinking, this couldn't be happening, no, not Colby. Not my kid. This kind of crap happens to other families, not mine. The neurologist said there was very little that could be done for Colby and that more than likely he would die from a respiratory infection by the time he was 12 or 18 months old. Oh really? I didn't know how, but I was hell bent and determined that Colby would live to be 2 years old. That goal seemed to be out of our reach based on what we were learning at the time about SMA. But thanks to God, or karma, or the universe or dumb luck or whatever force it was that put us in touch with Cincinnati Children's Hospital and other SMA families who were also beating the odds, here we are, 9 years later. I'd love to wheel Colby into that neurologist's office and say hey pal, check out this 9-year-old SMA Type I kid here. And oh by the way, screw your statistics, you ignorant jerkoff. I do believe faith, love, knowledge, support and sheer determination have been kicking your stat's ass for years now. Furthermore, through the good days, great days, horrible days, and really horrible days, I wouldn't change a thing. I don't look at Colby and see what he can't do. I only see what he has done, beating the odds every day, every month, every year he continues not only to survive, but thrive. I'm so very proud of my sweet boy Colby Michael Russ. Can't wait to see what else he accomplishes in the next 9 years!
Colby had his 1st "real" day back to school today. The bus was supposed to pick him up at 9:15 but somehow that didn't happen. So glad I called last week and got that all lined up with Transportation (grrrrr.) So I took the nurse and Colby to school in the van. I only stayed a few minutes, just long enough to make sure Colby was settled in class and that the nurse was comfortable. The bus did pick them up at school and yes, I was there and followed behind the bus in the terdmobile. Well, it was the nurse's 1st time being on the bus with Colby. She may have needed something. Colby had a great day at school. Thank goodness. I was kind of worried since he didn't go to school at all last week. Sometimes it's hard getting back in the school groove. So tomorrow, if all goes as planned, the bus will pick up Colby and the nurse for school at 9:15 here at the apartment. Then the bus will be at school and pick them up at 1:15. So I'll have some time to myself to run errands or get stuff around here done. Woo hoo, gonna party like crazy for a whole 3 hours on a Tuesday morning.
Did you watch Diane Sawyer's interview with Gabrielle Gibbons and Mark Kelly? It was amazing. I cried tears of joy. I cried tears of heartache. I try very hard not to be a jealous person. First of all, it's a very ugly, petty emotion and I don't think time should be wasted on it. Secondly, I think I've actually been pretty darn blessed in my life. I could have it so much worse. However, as I watched the Gibbons/Kelly interviews, I realized I was jealous of their relationship. I was thinking, how and where do you get that kind of love? Based on my past relationships, I obviously don't have a clue. I'd like to one day find someone who would love me as unconditionally as Mark Kelly does his bride. He takes that "in sickness and in health" thing really seriously. You can tell he's very proud of his wife, as he should be. He has always believed in her, always kept a positive attitude that she would get better, and I believe his attitude has helped her in her recovery a great deal. That's what I want. Someone who, if life were to throw us an unexpected, unbearable situation, would love me and have faith in me through it no matter what. I can see it now, Dear Santa, you'll never guess what I'm asking for this year…besides a hubcap for the van, of course.
Colby had his 1st "real" day back to school today. The bus was supposed to pick him up at 9:15 but somehow that didn't happen. So glad I called last week and got that all lined up with Transportation (grrrrr.) So I took the nurse and Colby to school in the van. I only stayed a few minutes, just long enough to make sure Colby was settled in class and that the nurse was comfortable. The bus did pick them up at school and yes, I was there and followed behind the bus in the terdmobile. Well, it was the nurse's 1st time being on the bus with Colby. She may have needed something. Colby had a great day at school. Thank goodness. I was kind of worried since he didn't go to school at all last week. Sometimes it's hard getting back in the school groove. So tomorrow, if all goes as planned, the bus will pick up Colby and the nurse for school at 9:15 here at the apartment. Then the bus will be at school and pick them up at 1:15. So I'll have some time to myself to run errands or get stuff around here done. Woo hoo, gonna party like crazy for a whole 3 hours on a Tuesday morning.
Did you watch Diane Sawyer's interview with Gabrielle Gibbons and Mark Kelly? It was amazing. I cried tears of joy. I cried tears of heartache. I try very hard not to be a jealous person. First of all, it's a very ugly, petty emotion and I don't think time should be wasted on it. Secondly, I think I've actually been pretty darn blessed in my life. I could have it so much worse. However, as I watched the Gibbons/Kelly interviews, I realized I was jealous of their relationship. I was thinking, how and where do you get that kind of love? Based on my past relationships, I obviously don't have a clue. I'd like to one day find someone who would love me as unconditionally as Mark Kelly does his bride. He takes that "in sickness and in health" thing really seriously. You can tell he's very proud of his wife, as he should be. He has always believed in her, always kept a positive attitude that she would get better, and I believe his attitude has helped her in her recovery a great deal. That's what I want. Someone who, if life were to throw us an unexpected, unbearable situation, would love me and have faith in me through it no matter what. I can see it now, Dear Santa, you'll never guess what I'm asking for this year…besides a hubcap for the van, of course.
Saturday, November 12, 2011
GOOD STUFF
Well, it's mostly good around here, I'm happy to report. Starting with Colby, my favorite topic of all time. He had appointments at Cincinnati Children's this past Wednesday and Thursday. We went up Wednesday night for a sleep study there in the hospital. That was supposed to be the easy part of the visit, but not so much. The main problem was even though Cincy called twice to remind us of the appointment, they failed to mention we would be discharged at 7:00 a.m. the next morning. Huh? Colby's appointments didn't start on Thursday until 10:15. I was like, so let me get this right, you're kicking us out in the morning? Just what in the crap are we to do with Colby, and ALL his supplies and equipment, for 3 hours?! Oh hell no. But in the end it all worked out and we were able to just stay put until time to leave for Colby's appointments (squeaky wheel you know.) The appointments on Thursday were a breeze. First up, lab work. I thought they would want blood work but they only wanted a urine sample. Cool. So we taped this baggie thingy on Colby's thingy and away we went to the next appointment, x-rays. Then from there we moved to cardiology for an echocardiogram and EKG. Then we met with the cardiologist, who said Colby's heart was just fine and she doesn't need to see him for 2 years. Happy, happy. Then we met with the pulmonologist who said Colby looked good and sounded good and for me to stop worrying about him so much. Easy for him to say, it's not his kid! He said overall Colby is doing fine. Don't change his bi-pap settings for now and just give him extra cough treatments or bi-pap time if he needs them. We'll get the sleep study results back in 10-14 days.
So you should have seen the 8-incher I was holding today! An 8-inch ponytail, that is. Got all my hair whacked off today to donate to Pantene's Beautiful Lengths. It's short, super short as a matter of fact, but the style is really cute. It'll take some getting used to. Thinking maybe now I need some highlights. Don't know, we'll see how this new-do looks over the next week or so. Usually I won't do any kind of color/highlights in my hair because it's too much work (and money) to maintain.
We were very tired after getting home from Cincy Thursday night. Those are long, exhausting trips. Even though by now I could pack Colby's stuff up blindfolded, I always worry I've forgotten something important that he needs. There's no way that could happen. I have a "don't event think of leaving home without this stuff for Colby" list that I check, double and triple check. But if I didn't worry about that, I'd be worrying about the van breaking down, getting stuck in traffic, getting bad news about Colby, etc. Like I said, exhausting, mainly mentally. So we slept in Friday morning. Ahhhh, that was nice. We've had a laid back couple of days, which is just fine with me. Got the apartment cleaned. Spent some QT with Colby. I'm sure things are going to get crazy around here with the benefit next weekend, Thanksgiving the week after that (how is that possible?!) and then boom, it's December and all the Christmas hoop-dee-do. Yikes. Don't know if I'm ready for all that or not. Too freakin bad, huh? Ready or not, here it comes.
Mr. Colby is going to be a star soon. Or should I say even more of a star than he already is haha. Years ago when Colby was a baby, a photojournalism student, Maggie, did a project on him and SMA for one of her classes. Well she has moved back to Louisville. She's a freelance photographer and has a very impressive list of jobs she's done. Now she's starting a magazine called THIS…is Louisville, and Colby Russ is going to be featured in the first edition in January 2012. So excited! She's been hanging out with us as we go through the everyday routine with Colby. I think Maggie has taken quite an interest in Colby (but you know, who wouldn't, right?) She even drove up to Cincy and took pictures while we were at our appointments. Can't wait to see the article!
Well, that's all folks. That's what is new here in Russ Land. I'm determined to get up in the morning and exercise, which is not going well by the way. I can't believe how sore I'm getting after workouts. It takes so long to get into even just decent shape. Then if you don't stick with it, like you have surgery or you're kid is in the hospital or something like that, boom, you're huffing, puffing and flopping around trying to do even the easy exercises. WTH?! I find it highly irritating. Gotta stick with it though.
So you should have seen the 8-incher I was holding today! An 8-inch ponytail, that is. Got all my hair whacked off today to donate to Pantene's Beautiful Lengths. It's short, super short as a matter of fact, but the style is really cute. It'll take some getting used to. Thinking maybe now I need some highlights. Don't know, we'll see how this new-do looks over the next week or so. Usually I won't do any kind of color/highlights in my hair because it's too much work (and money) to maintain.
We were very tired after getting home from Cincy Thursday night. Those are long, exhausting trips. Even though by now I could pack Colby's stuff up blindfolded, I always worry I've forgotten something important that he needs. There's no way that could happen. I have a "don't event think of leaving home without this stuff for Colby" list that I check, double and triple check. But if I didn't worry about that, I'd be worrying about the van breaking down, getting stuck in traffic, getting bad news about Colby, etc. Like I said, exhausting, mainly mentally. So we slept in Friday morning. Ahhhh, that was nice. We've had a laid back couple of days, which is just fine with me. Got the apartment cleaned. Spent some QT with Colby. I'm sure things are going to get crazy around here with the benefit next weekend, Thanksgiving the week after that (how is that possible?!) and then boom, it's December and all the Christmas hoop-dee-do. Yikes. Don't know if I'm ready for all that or not. Too freakin bad, huh? Ready or not, here it comes.
Mr. Colby is going to be a star soon. Or should I say even more of a star than he already is haha. Years ago when Colby was a baby, a photojournalism student, Maggie, did a project on him and SMA for one of her classes. Well she has moved back to Louisville. She's a freelance photographer and has a very impressive list of jobs she's done. Now she's starting a magazine called THIS…is Louisville, and Colby Russ is going to be featured in the first edition in January 2012. So excited! She's been hanging out with us as we go through the everyday routine with Colby. I think Maggie has taken quite an interest in Colby (but you know, who wouldn't, right?) She even drove up to Cincy and took pictures while we were at our appointments. Can't wait to see the article!
Well, that's all folks. That's what is new here in Russ Land. I'm determined to get up in the morning and exercise, which is not going well by the way. I can't believe how sore I'm getting after workouts. It takes so long to get into even just decent shape. Then if you don't stick with it, like you have surgery or you're kid is in the hospital or something like that, boom, you're huffing, puffing and flopping around trying to do even the easy exercises. WTH?! I find it highly irritating. Gotta stick with it though.
Monday, November 7, 2011
BENEFIT INFORMATION - UPDATED
BENEFIT FOR COLBY RUSS
Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue, Sellersburg, IN 47172
11:00 a.m. – 3:00 p.m. - Bazaar
Lots of booths. Admission to bazaar is free. Excellent time to start Christmas shopping. Silent auction items will be available for bidding.
***********************************
Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children 12 and under, which includes food, entertainment, music...and much, much, more!!!
4:30 p.m. – 5:30 p.m.
Music provided by “Under Construction” - Eclectic group of teenagers singing everything from Cowboy Casanova to Crazy Train.
6:00 p.m. – 8:00 p.m.
Music provided by “Bad Omen” - Rock-n-roll all the way.
8:00 p.m. - 9:00 p.m.
Silent Auction Wraps Up
9:00 p.m. – 11:00 p.m.
Music provided by “Changing Lanes” - Three member acoustic group performing originals and covers from influences in pop, rock and alternative.
If you have questions or would like to donate a raffle item or silent auction basket, please contact Pam at 812-989-2957.
If you will not be able to attend and would like to make a donation, please make payable to
Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172
**********************************
Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist.
Colby’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's Hospital. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.
Thank you in advance for your support!
Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue, Sellersburg, IN 47172
11:00 a.m. – 3:00 p.m. - Bazaar
Lots of booths. Admission to bazaar is free. Excellent time to start Christmas shopping. Silent auction items will be available for bidding.
***********************************
Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children 12 and under, which includes food, entertainment, music...and much, much, more!!!
4:30 p.m. – 5:30 p.m.
Music provided by “Under Construction” - Eclectic group of teenagers singing everything from Cowboy Casanova to Crazy Train.
6:00 p.m. – 8:00 p.m.
Music provided by “Bad Omen” - Rock-n-roll all the way.
8:00 p.m. - 9:00 p.m.
Silent Auction Wraps Up
9:00 p.m. – 11:00 p.m.
Music provided by “Changing Lanes” - Three member acoustic group performing originals and covers from influences in pop, rock and alternative.
If you have questions or would like to donate a raffle item or silent auction basket, please contact Pam at 812-989-2957.
If you will not be able to attend and would like to make a donation, please make payable to
Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172
**********************************
Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use a communication system with eye gaze technology. He is followed by a pulmonologist, neurologist, cardiologist, orthopedist, dietician and physical therapist.
Colby’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's Hospital. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.
Thank you in advance for your support!
JUST CALL ME BETTY
Betty Crocker that is. Spent Friday baking and Saturday decorating large princess tiara cookies to help my friend who was hosting a baby shower. She wanted to give the cookies as party favors. She asked if I would help and I said I'll do even better, I'd do all of it, just bring me the ingredients to make the cookies and icing. So she did. When she was leaving she said oh, I need 45 cookies. Huh?! Oh crap I thought. Did you say 4 or 5 by any chance? Nope, 45. Took 3 bags of cookie mix and a double batch of royal icing, but they got done. It was my 1st time working with royal icing so I was kind of winging it. Not my best decorating effort, but she was pleased with the way they looked and that's what matters. It was so nice for me to be able to help a friend instead of the other way around for once. Very glad to do it.
Then I made a broccoli casserole for a luncheon at my church. I serve on the bereavement committee and sometimes we also help with the food for special luncheons, like today's for All Souls Day (at least I think that's what it was for.) I find getting in the kitchen relaxing so actually I enjoyed the cooking and baking I did. If I was really smart I would have saved some back for myself, but I didn't. Oh well, just gives me an excuse to make another casserole. My great aunt's recipe, it rocks.
I've noticed Colby isn't quite back to baseline from before his hospitalization. Doesn't take much for his heart rate to go up or his oxygen to go down. Hmmm, what could explain this? Seasonal allergy goop causing respiratory issues? He just needs more time after such a long hospital stay? This is his new baseline? Who knows. I learned long ago you can't figure out SMA. It is what it is and you have to deal with the situation at hand. So that's what we'll do. Maybe when we go to Cincinnati this week and Colby has a sleep study, that will give us some answers. We did have a very busy week last week. Maybe he just needs some extra rest. The school corporation doesn't have school Monday and Tuesday of this week so he'll be able to chill before we head to Cincy on Wednesday and Thursday.
My friends have been working their bahunas off getting our upcoming benefit ready. They had another "Colby's Committee" meeting today and I joined this one. A lot of work has been done and there's still a lot to do. I want to help in some way, after all, Colby and I are the ones receiving the benefits of this event. I'm not exactly a sit on the sidelines kind of girl, it's my nature to jump in and help. So far they have 10 or 11 vendors for the bazaar. The silent auction items are shaping up, too, lots of cool basket themes. I'm very impressed with how much work they've done already. I have the most loving, wonderful, supportive, giving, helpful bunch of family and friends EVER. I'll post more info on the benefit in the next day or 2.
So I've started exercising again. Haven't done that since around the middle of August. I have 10 or so aerobics tapes around here. Decided to start out slow so I put in the shortest, easiest of the videos, a little 32-minute workout of toning and cardio. No pushups, no crunches, no step aerobics, no big deal, right? OMG thought I was going to collapse before it was over and I'm not kidding! I didn't know which was going to give out first, my wobbling, burning thighs, my right hip or my pounding heart! It was awful but I struggled, grunted and cussed my way through it. Did the elliptical today. Can't wait to see what muscles ache tomorrow.
That's all for now I guess. I'd better get to bed. Nitey-night blog followers.
Then I made a broccoli casserole for a luncheon at my church. I serve on the bereavement committee and sometimes we also help with the food for special luncheons, like today's for All Souls Day (at least I think that's what it was for.) I find getting in the kitchen relaxing so actually I enjoyed the cooking and baking I did. If I was really smart I would have saved some back for myself, but I didn't. Oh well, just gives me an excuse to make another casserole. My great aunt's recipe, it rocks.
I've noticed Colby isn't quite back to baseline from before his hospitalization. Doesn't take much for his heart rate to go up or his oxygen to go down. Hmmm, what could explain this? Seasonal allergy goop causing respiratory issues? He just needs more time after such a long hospital stay? This is his new baseline? Who knows. I learned long ago you can't figure out SMA. It is what it is and you have to deal with the situation at hand. So that's what we'll do. Maybe when we go to Cincinnati this week and Colby has a sleep study, that will give us some answers. We did have a very busy week last week. Maybe he just needs some extra rest. The school corporation doesn't have school Monday and Tuesday of this week so he'll be able to chill before we head to Cincy on Wednesday and Thursday.
My friends have been working their bahunas off getting our upcoming benefit ready. They had another "Colby's Committee" meeting today and I joined this one. A lot of work has been done and there's still a lot to do. I want to help in some way, after all, Colby and I are the ones receiving the benefits of this event. I'm not exactly a sit on the sidelines kind of girl, it's my nature to jump in and help. So far they have 10 or 11 vendors for the bazaar. The silent auction items are shaping up, too, lots of cool basket themes. I'm very impressed with how much work they've done already. I have the most loving, wonderful, supportive, giving, helpful bunch of family and friends EVER. I'll post more info on the benefit in the next day or 2.
So I've started exercising again. Haven't done that since around the middle of August. I have 10 or so aerobics tapes around here. Decided to start out slow so I put in the shortest, easiest of the videos, a little 32-minute workout of toning and cardio. No pushups, no crunches, no step aerobics, no big deal, right? OMG thought I was going to collapse before it was over and I'm not kidding! I didn't know which was going to give out first, my wobbling, burning thighs, my right hip or my pounding heart! It was awful but I struggled, grunted and cussed my way through it. Did the elliptical today. Can't wait to see what muscles ache tomorrow.
That's all for now I guess. I'd better get to bed. Nitey-night blog followers.
Thursday, November 3, 2011
THURSDAY'S THOUGHTS
I've had a couple of my friends ask me where I've been the last couple days. They hadn't heard from me much. One word: COLBY. Take today for example. Got COLBY up for school. The nurse came and we got COLBY loaded up in the van. Took COLBY to school (in the cold pouring rain I might add.) Stayed with COLBY and the nurse at school. Then we loaded COLBY in the van and brought him home. The bath aide came over and we did COLBY'S bath. Then gave COLBY his afternoon cough treatment. Hung out with COLBY for a couple of hours, then put COLBY to bed. Also took COLBY trick-or-treating on Halloween so yeah, it's all about the kid this week. And that's different from any other week how exactly...?
So this new nurse, whom we really, really, REALLY like, wants to go to school with Colby 3 days a week. Hallelujah, yee haw, good news, thank goodness. I'm hoping the principal will agree to let me come to school with Colby 1 day a week. Haven't had a chance to ask him yet. I really like being in the school to get a feel for what's going on in Colby' class. He doesn't exactly come home and get to tell me about his day, you know? If he's able to go to school 4 days a week I'll be very happy with that for now. Next week is a no-go. No school Monday and Tuesday, professional development days. Wednesday and Thursday we have appointments in Cincy. Friday we'll need to rest from being at Cincy! But the following Monday, it'll be school full tilt. Tomorrow I'll talk to the principal and transportation to get a bus starting on the 14th. The nurse will come here to the apartment. We'll load them all up and he'll be off to school! I think the nurse is ready to watch Colby on her own. Oh who am I kidding, I'm sure I'll either ride the bus with them and go to school 1 more time or maybe I'll just follow the bus and "supervise" the new nurse 1 more time. Gotta make sure my sweet boy will be okay!
Mr. Colby is being quite stubborn lately and NOT using his eye gaze/communication device. I thought maybe he just didn't want to do it for his mama, but today at school he didn't give much effort for the speech therapist either. I don't get it. Seems to me if you finally, after 9 years of not being able to communicate your needs, had a machine that can "talk" for you, wouldn't you want to "talk" all the time? Apparently not. We've told him over and over he can say anything he wants with the eye gaze. Tell us your feet are cold. Tell us your favorite color. Tell us you're bored. Tell us our breath stinks. Tell us you want to go outside. Tell us SOMETHING for shit's sake. He's obviously not feeling it lately. So we're going to try to figure out a way to motivate him to use it. Any suggestions?
This Halloween candy has got to get out of this apartment, immediately! I packed up 2 baggies worth of suckers, Nerds, Life Savers, etc and gave them to Colby's bath aide today. She didn't want any chocolate (what is wrong with that chick?!) But tomorrow the chocolate stuff has to go somewhere, anywhere but in my face. It's no big secret I gained weight over the summer. My larger, wider ass pretty much tells the story on that these days. Thanks thyroid issues and hospital stay stress eating, really appreciate it. I've been trying to lose some of it and that will never happen if all these goodies are around here. I'll openly admit I have no self control when it comes to sweets. So it's all got to go. Except maybe those peanut butter Snickers squared. Man, those things rock.
I want to take a moment to say THANK YOU to my friends who are organizing this upcoming benefit for Colby and me. My friend Pam said hey, you haven't been able to work, we're going to have a benefit to help. Then she called 5 or 6 of my other girlie friends, and viola, a benefit is now in the making. THANK YOU, THANK YOU to those who are organizing the benefit. THANK YOU to all who are helping to spread the word. THANK YOU to all who are donating or collecting raffle and auction items and THANK YOU to all who plan to attend. Should be a fun time with lots of activities throughout the day. I've said it before, don't know where I'd be without so many caring, giving, loyal friends and family. Again, THANK YOU SO VERY MUCH everyone.
I just realized it's almost midnight. I've been blogging and babbling on for quite some time now. Need to get to bed. Thanks for "listening." There are several SMA kiddos in the hospital right now. Tis the season for respiratory complications. Some of them are good friends of ours. If you're the praying sort, please give a shout out to the Big Guy for these sweet kids. I'm hoping they all get well and get out of the hospital soon. It's a sucky place to be, especially this time of year with the upcoming holidays.
So this new nurse, whom we really, really, REALLY like, wants to go to school with Colby 3 days a week. Hallelujah, yee haw, good news, thank goodness. I'm hoping the principal will agree to let me come to school with Colby 1 day a week. Haven't had a chance to ask him yet. I really like being in the school to get a feel for what's going on in Colby' class. He doesn't exactly come home and get to tell me about his day, you know? If he's able to go to school 4 days a week I'll be very happy with that for now. Next week is a no-go. No school Monday and Tuesday, professional development days. Wednesday and Thursday we have appointments in Cincy. Friday we'll need to rest from being at Cincy! But the following Monday, it'll be school full tilt. Tomorrow I'll talk to the principal and transportation to get a bus starting on the 14th. The nurse will come here to the apartment. We'll load them all up and he'll be off to school! I think the nurse is ready to watch Colby on her own. Oh who am I kidding, I'm sure I'll either ride the bus with them and go to school 1 more time or maybe I'll just follow the bus and "supervise" the new nurse 1 more time. Gotta make sure my sweet boy will be okay!
Mr. Colby is being quite stubborn lately and NOT using his eye gaze/communication device. I thought maybe he just didn't want to do it for his mama, but today at school he didn't give much effort for the speech therapist either. I don't get it. Seems to me if you finally, after 9 years of not being able to communicate your needs, had a machine that can "talk" for you, wouldn't you want to "talk" all the time? Apparently not. We've told him over and over he can say anything he wants with the eye gaze. Tell us your feet are cold. Tell us your favorite color. Tell us you're bored. Tell us our breath stinks. Tell us you want to go outside. Tell us SOMETHING for shit's sake. He's obviously not feeling it lately. So we're going to try to figure out a way to motivate him to use it. Any suggestions?
This Halloween candy has got to get out of this apartment, immediately! I packed up 2 baggies worth of suckers, Nerds, Life Savers, etc and gave them to Colby's bath aide today. She didn't want any chocolate (what is wrong with that chick?!) But tomorrow the chocolate stuff has to go somewhere, anywhere but in my face. It's no big secret I gained weight over the summer. My larger, wider ass pretty much tells the story on that these days. Thanks thyroid issues and hospital stay stress eating, really appreciate it. I've been trying to lose some of it and that will never happen if all these goodies are around here. I'll openly admit I have no self control when it comes to sweets. So it's all got to go. Except maybe those peanut butter Snickers squared. Man, those things rock.
I want to take a moment to say THANK YOU to my friends who are organizing this upcoming benefit for Colby and me. My friend Pam said hey, you haven't been able to work, we're going to have a benefit to help. Then she called 5 or 6 of my other girlie friends, and viola, a benefit is now in the making. THANK YOU, THANK YOU to those who are organizing the benefit. THANK YOU to all who are helping to spread the word. THANK YOU to all who are donating or collecting raffle and auction items and THANK YOU to all who plan to attend. Should be a fun time with lots of activities throughout the day. I've said it before, don't know where I'd be without so many caring, giving, loyal friends and family. Again, THANK YOU SO VERY MUCH everyone.
I just realized it's almost midnight. I've been blogging and babbling on for quite some time now. Need to get to bed. Thanks for "listening." There are several SMA kiddos in the hospital right now. Tis the season for respiratory complications. Some of them are good friends of ours. If you're the praying sort, please give a shout out to the Big Guy for these sweet kids. I'm hoping they all get well and get out of the hospital soon. It's a sucky place to be, especially this time of year with the upcoming holidays.
Wednesday, November 2, 2011
BENEFIT INFORMATION
BENEFIT FOR COLBY RUSS
Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue
Sellersburg, IN 47172
11:00 a.m. – 3:00 p.m. - Bazaar featuring lots of booths!
(Excellent time to start Christmas shopping)
***********************************
4:30 p.m. – 5:30 p.m. - Music provided by “Under Construction”
6:00 p.m. – 8:00 p.m. - Music provided by “Bad Omen”
8:00 p.m. - 9:00 p.m. - Silent Auction
9:00 p.m. – 11:00 p.m. - Music provided by “Changing Lanes”
Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children (12 and under),
which includes food, entertainment, music…and much, much more!!!
If you have questions or would like to donate a raffle item/basket, please contact Pam at 812-989-2957
If you will not be able to attend and would like to make a donation, please make payable to Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172
**********************************
Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially-equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use 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’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.
Thank you in advance for your support!
Saturday, November 19, 2011
Moose Lodge
1040 South Indiana Avenue
Sellersburg, IN 47172
11:00 a.m. – 3:00 p.m. - Bazaar featuring lots of booths!
(Excellent time to start Christmas shopping)
***********************************
4:30 p.m. – 5:30 p.m. - Music provided by “Under Construction”
6:00 p.m. – 8:00 p.m. - Music provided by “Bad Omen”
8:00 p.m. - 9:00 p.m. - Silent Auction
9:00 p.m. – 11:00 p.m. - Music provided by “Changing Lanes”
Admission after 4:00 p.m. is $15.00 for adults and $7.00 for children (12 and under),
which includes food, entertainment, music…and much, much more!!!
If you have questions or would like to donate a raffle item/basket, please contact Pam at 812-989-2957
If you will not be able to attend and would like to make a donation, please make payable to Amy Russ, c/o Moose Lodge, 1040 South Indiana Avenue, Sellersburg, IN 47172
**********************************
Colby was diagnosed with SMA Type I at 4 months of age, although he had a life expectancy of age 2, Colby just celebrated his 9th birthday July 22, 2011. He is in a wheelchair and requires a specially-equipped van that holds all of his medical supplies and breathing machines. Colby uses various braces and supports to help prevent contractures and assist in positioning. He is nonverbal, but is currently learning to use 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’s mother, Amy, is a single mom who works 2 part time jobs in order to accommodate Colby's schedule. She primarily cares for him on her own. Colby was recently hospitalized for 39 days at Cincinnati Children's. Amy stayed with Colby during his hospitalization and was unable to work during that time. Furthermore, she was diagnosed with thyroid cancer in May 2011, and consequently has had 2 outpatient surgeries. This diagnosis has brought more time off from work for her, along with extensive medical bills.
Thank you in advance for your support!
Tuesday, November 1, 2011
WAY WORTH IT
When we do Halloween around here, we do it BIG! Hey, wouldn't have it any other way. Colby was without a doubt the cutest cowboy EVER in his costume. He was set head to toe - hat, vest, bolo tie, marshal star, chaps, boots, holster and guns, lasso on his wheelchair and the finishing touch, a fake moustache. Every cool cowboy has a moustache of course. On Saturday we went to an outdoor fall festival thingy here in Louisville. Colby's "Aunt Kimmie" went with us. It was windy that day but the fall festival was short, which was good. Saturday night was WILD, I mean crazy, at 4th Street Live. I went with my friends, who happen to be sisters and were matching silver aliens that night, Joni and Jill. We had a blast. It was great to get out and be silly for a bit. Then for the actual Halloween day, Colby went to school where they go around to all the classrooms for trick-or-treating. Colby is in 4th grade but this was the 1st time he got to do the school t-o-t. In years past he's either been sick or had appointments in Cincy the day they did it. He was decked out as Colby Cowboy and I was wearing an Indian costume. Get it, cowboy and Indian? We got some really good pics. My mom went with us and a good time was had by all. Later Halloween night Colby and I went to his super fine babysitter's house for MORE trick-or-treating. Colby was tired by the time we got to Rosa's, so he had to wear his bi-pap the whole time. The old me would have freaked because Colby wasn't in his complete costume, it was getting late, he was tired, etc. But the new me was like hell yeah we're going trick-or-treating on Halloween night!
Colby was worn out by the time we got home. He even fell asleep in the van. My everything hurt by the time we got home. My feet from walking. My back from lifting Colby all day. Somehow I've managed to pull or pop or tear or mess up my right hip. Don't know what the crap I've done, just know it's been hurting for a week or so. I was pushing Colby in his manual wheelchair and we hit a bump in the sidewalk. Colby's wheelchair stopped and I ran into the back of it. Let's just say I have a bruise in a very interesting spot at the moment. Yeah, ouch. I had a headache from running around all day. Like I said, EVERYTHING hurt by the time we got home. Was it worth it? You better believe it. Would I do it again, absolutely. Loved spending such a special Halloween with my friends and my bestest, sweetest, cutest cowboy Colby.
Hey guess what I did today? I worked! First time since oh, I don't know, the middle of August. Left Colby alone for the 1st time with this new nurse. I was only gone a total of 4 hours, but I was a nervous wreck leaving Colby. Work went fine. Anyone who knows me knows I haven't had the best luck at that job sometimes. I have a tendency to break machines, leave there in tears, etc. But today went well, it all came back, kind of like riding a bike. Even had to change out ribbons and didn't tear up anything. Woot woot! I'm thrilled with this new nurse, and the best news, she's going to start going to school with Colby. Fan-freakin-tastic! She's wants to do it 3 days a week. I'm thrilled. That means I'll have to find another nurse to help around here, but getting Colby back in school, on the bus, with a new nurse takes priority. The whole nursing thing is exhausting sometimes. I'm going to blog about that one day in the hopes that it can help another SMA family. Although I don't know how much help I'll be, because at the moment, I'm still confused as to how many nursing hours Colby gets and for how long. Thought that was all worked out but now I'm not so sure. Exhausting I tell ya.
So glad to be reporting things are looking up around here. Nothing else has exploded. All major appliances seem to be in working order. Colby is well. I feel just a tad more sane than I did a month ago when we came home from Cincy. Still a long way to go, but just need to take baby steps to get there. Bye for now.
Colby was worn out by the time we got home. He even fell asleep in the van. My everything hurt by the time we got home. My feet from walking. My back from lifting Colby all day. Somehow I've managed to pull or pop or tear or mess up my right hip. Don't know what the crap I've done, just know it's been hurting for a week or so. I was pushing Colby in his manual wheelchair and we hit a bump in the sidewalk. Colby's wheelchair stopped and I ran into the back of it. Let's just say I have a bruise in a very interesting spot at the moment. Yeah, ouch. I had a headache from running around all day. Like I said, EVERYTHING hurt by the time we got home. Was it worth it? You better believe it. Would I do it again, absolutely. Loved spending such a special Halloween with my friends and my bestest, sweetest, cutest cowboy Colby.
Hey guess what I did today? I worked! First time since oh, I don't know, the middle of August. Left Colby alone for the 1st time with this new nurse. I was only gone a total of 4 hours, but I was a nervous wreck leaving Colby. Work went fine. Anyone who knows me knows I haven't had the best luck at that job sometimes. I have a tendency to break machines, leave there in tears, etc. But today went well, it all came back, kind of like riding a bike. Even had to change out ribbons and didn't tear up anything. Woot woot! I'm thrilled with this new nurse, and the best news, she's going to start going to school with Colby. Fan-freakin-tastic! She's wants to do it 3 days a week. I'm thrilled. That means I'll have to find another nurse to help around here, but getting Colby back in school, on the bus, with a new nurse takes priority. The whole nursing thing is exhausting sometimes. I'm going to blog about that one day in the hopes that it can help another SMA family. Although I don't know how much help I'll be, because at the moment, I'm still confused as to how many nursing hours Colby gets and for how long. Thought that was all worked out but now I'm not so sure. Exhausting I tell ya.
So glad to be reporting things are looking up around here. Nothing else has exploded. All major appliances seem to be in working order. Colby is well. I feel just a tad more sane than I did a month ago when we came home from Cincy. Still a long way to go, but just need to take baby steps to get there. Bye for now.
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