ROAD TRIP

Hi-ho, hi-ho, it's off to Cincy we go. We'll be leaving in a couple of hours for Colby's surgery pre-op appointments. Today will be an "easy" day. Easy being in quotes because getting/taking Colby anywhere really isn't that easy. We'll drive to Cincinnati Children's northern campus, on the other side of the city, for his endocrinology appointment. Drive to a hotel near the hospital. Get up at the butt crack of dawn tomorrow. Then tomorrow it's boom, boom, boom. Appointments straight through from 9AM to 3PM. That's ok, I'd rather do it this way than have to make multiple trips up there.

Saturday I worked and when I got home, my sweet mama came over and helped me get the packing process started. We got together what we could. Some things we have to pack last minute because we needed to use them this morning. We were on it! Printed out the Colby-is-going-out-of-town list, and started getting it together. A pile for respiratory. A pile of feeding supplies. A pile for meds. This morning has been a breeze really. Obviously it's going well, or I wouldn't be here blogging 2 hours before our departure time!

I watched a lot of basketball over the weekend. Have to get it while I can, the season will soon be over. Seriously, if you don't like March Madness, there is something wrong with you. I urge you to seek therapy immediately. Basketball tournament time has everything - action, drama, emotion, surprise, upset, victory. It's reality TV in it's purest form, and I love it. How could you not?! Even though none of the teams I wanted to win actually won over the weekend, I still love watching. I try to keep in mind it's "just" a game. However, if UK ends up winning it all, someone is going to have to talk me down off the ledge. Just sayin'.    

Colby's nurse is back there getting him up. So nice having her help today. She'll also be driving up and helping us at the hospital all day tomorrow. I'm so thankful for that. Not that I can't take care of Colby by myself, because I certainly still can. But she will be such a huge help for feeding, changing, cough treatments, and overall being another set of ears for me. My dad is taking us up. God love him. He wants to leave 3.5 hours for a drive that should take about 2 hours. But that's ok. He's driving. His decision. I'll be in the back taking care of sweet boy. Seriously, where would I be without my parents?!  

Time to get the last minute packing done, eat some breakfast and away we go. The next blog will be after we're home Wednesday. Hoping I'll be typing words such as uneventful, went smoothly, no surprises, etc. Keep your fingers crossed for that!

IT'S FINALLY FRIDAY - AND THE BIG GAME IS APPROACHING - I'M GIDDY

We had an interesting morning around here today. Colby's bus driver backed into a rack that was sticking out the back of a minivan. I assume it was a bike rack, although it didn't look like any bike rack I have ever seen. Well anyways, there was absolutely no damage done to the bus or to the minivan, and the rack appeared to be in working order. But of course we couldn't just let it go. The bus driver had to call the bus compound, those are the rules. Then they sent a police officer. Then the owner of the minivan came out. Oh boy. Turns out she hit a rack that belongs to the Church of Latter Day Saints! We have some elders that live here in the apartment complex, and they must use the minivan when they're out spreading the Word. Now, I'm not trying to be mean, and I'm certainly not prejudiced against anyone's religious beliefs. Really I'm not, everyone has the freedom to believe and worship as they wish as far as I'm concerned. However, these young men were just down right weird. Very socially awkward. They were out taking pictures of the van. On their cell phones. Writing down information. She hit you're freakin' bike rack, dudes, calm down. Not to mention there was a policeman there to take down all the information. Finally the ordeal was over. So Colby was late for school, and I was late for work. Luckily I don't have to punch a timecard at work, and can make up the time I missed when I go to work tomorrow. Happy Friday!

But we also got some good news today. Colby has pre-op appointments in Cincinnati next Monday and Tuesday. We have a lot to get done in those 24 hours! I've been working with the ortho spine nurse to make sure everyone is on the same page. I want to know exactly what specialists we're seeing and exactly what blood labs need to be drawn. Remember the fiasco we had with Hematology last year at this time?! NOT going through that crap again. I really like this nurse so far. She seems to be on top of things, and returns phone calls. She checked with all those involved who wanted labs, and she told me that all of Colby's blood work can be drawn from his port. Now that is darn good news. Great news, really. She made my whole day. I'm very, very pleased to hear this, since Colby is such a horrible stick to try and get a peripheral draw. I'm pissed that Colby had to go through what he went through last year to get the blood work, but sooooo happy we're not going through that crap next week. Happy dance time.

We're trying a new medication with Colby. He "slobbers" a lot since he doesn't have a swallow and has very limited movement of his mouth and tongue. He's always had lots of oral secretions. I worry that they may drain down his throat and cause aspiration. I also worry about the aesthetics of Colby drooling these days. He's getting older, and I can't help but think it may bother him some. Maybe, maybe not, but I wanted to try something else. We tried Robinol over the summer, but it just didn't work for Colby. Dried out his secretions too much, which caused trach plugs. That's a huge no-no. I'll take slobber over plugs any day! So this time around we're trying scopolamine. It's a transdermal patch you change every 3 days. We started using it last Friday. I'm already having my doubts it's going to work for Colby. It tries up his secretions for sure. He had his normally scheduled trach change tonight and sure enough, there were dried, "cement-like" secretions stuck in his trach. That's not good. That's exactly what happened with the Robinol. We'll see the pulmonologist this coming Tuesday and discuss it then.

Colby took a big, fat nap today. So unlike him. I got home from work at about 3:30, and by 4:00 this kid was zonked out. One eye shut, one half open, heart rate in the 60's. Yep, that's how Colby snoozes. Guess he wanted to be well rested and stay up with me to watch the Cards vs Cats. Although we already, of course, know who's going to win. And that's all I have to say about that. Good night, all. More blogging soon.  

HARD TO FIND THE WORDS

Sometimes SMA sucks so badly I can't begin to put it into words. We in the SMA community deal with it the very best we can. Once we are thrown into this unknown bullshit disorder, we research, talk to and support other SMA families, and learn more about neurology, pulmonology, nutrition, cardiology, physical therapy, endocrinology, etc than we ever wanted. We do it all because we love our kiddos, and like any parents, just want the best for our children. We find joy where we can and celebrate the lives and accomplishments of others with SMA. That's why when a sweet, beautiful, smart SMA child dies, it stabs us all in the heart. Your heart sinks, you're stunned, and really you just want to crawl in a cave and grieve for anyone who has ever had to deal with this awful disorder. This family is very active in the SMA community. So many people that are in my "inner SMA circle" are shocked to hear of her passing. She will be "forever 7" but honestly, this is a term I'm having a hard time accepting right now. We say we cannot imagine what the family is going through, even though in the back of our minds we know that really at any time it could be OUR kid next. So many of us have SMA kids who have far outlived their expectancy. Hard to believe Colby is only 11, yet is considered an "old man" in the SMA Type I world. News like this resonates how precious our children really are, and how every day we have we them is priceless and should be celebrated. Listen to me people, because I'm as guilty of this as anyone else, but please, please don't sweat the small stuff. Get perspective!  

I HATE SMA! That's such an understatement. Really I can't find the words to say how devastating this disorder can be on an individual and family. This is not a pity party. This is reality. The harsh, overwhelming reality of raising a child with SMA. This is where I get my perspective. Yes, it's important for Colby to learn math, how to spell. But I always try to keep my bearings about all of it, because his health is ALL that really matters. Keeping him alive and giving him a good quality of life is my first and only goal in this world, period. Many days I want to shut the whole world out. Lock the doors, pull the blinds, turn off the phones and do nothing but spend time with my sweet boy. Snuggle with him. Listen to him jabber. Have him squeeze my fingers. Look at his adorable, handsome face and take in every precious second. I've gotten to do this for 9 extra years that doctors said I'd never have with Colby. My heart breaks for the families who no longer have their sweet children. I don't use this word often because I don't want to sound like a whiner, but it's UNFAIR.

I feel like this blog entry is rambling on, but I'm just trying to express how very sorry I am to hear of Kaitlyn's passing. I will keep the family close in my heart and will be praying they some day find comfort and peace with all this. I started this blog as a way to keep family and friends informed of what all is going on with Colby. But as time goes by, this blog has proved to be very helpful to me, too. It's a way for me to get some of my feelings out, the good, bad and ugly I suppose. So thank you for allowing me to share and to vent. Thanks for celebrating the good times, too, and for staying connected to us through my blog. Your comments and support over the years help me deal with SMA in a somewhat healthy, manageable manner. I'm very grateful for that, because on days like this, I need it in the worst of ways.   

TOP O' THE EVENING TO YA

Finally found my license a few days ago. It was stuck down in a Walgreens bag. Of course, where else would it be?! How did it get there? Not quite sure, don't ask me how or who or why, just very thankful I found them when I did.

During Colby's IEP, we talked about increasing his school day an hour. If we did, he would go to school 5 days a week from 9:45 to 2:15. I'm the one who thought of it, but lately I've been rethinking this idea. Colby has been tuckered out on Thursday and Friday the last couple of weeks. I think it's a combination of going to school more days, swimming on Tuesdays and puberty haha. Last Friday morning he slept through his entire IPV and CoughAssist treatments. Then when he went to school that day, he kept saying "sleep" on his eye gaze. So I'm going to give it some more thought and see how he does over the next couple of weeks.

We have the loaner eye gaze for Colby. We've had to fine tune a few pages so it's more like his old one. Not my cup of tea. Last night the nurse and I, along with Skyping with Colby's speech therapist, were trying to figure out why the wireless wouldn't work on it. Finally got that mystery solved. Today in school he was asked to spell March. He got as far as M-A-. I had him do R-C-H as homework when he first got home from school. He must've really wanted to watch Spongebob, because he had it done in about 20 minutes. Amazing what a little bribery can do.

We were able to go to the St. Patrick's Day parade this past Saturday, and it was pretty much a darn perfect day. The weather was fabulous. We had a nurse to go with us and help. Colby didn't have the first sign or symptoms of a choke. We left home at 2:00 and got home about 5:30. I had all these grandiose ideas that we would get Colby settled, the nurse would leave and I would get on the ball and do a workout tape. Yeah, that did NOT happen. I was exhausted. We had to walk 5-6 blocks from where we parked up to the parade and back, so that was good enough for me.

Okay, listen to me. It's 100 days until Colby's VEPTR surgery. Not that I'm counting. Not that I'm obsessed with it. Not that I'm already worried to the nth degree about it. Not that I think about it every day. I'm sure I'm already driving Colby's nurses crazy. I seem to have a question/worry du jour concerning his upcoming pre-op appointments, the surgery itself, or the recovery. So, friends who are in close contact with me, it's now officially your job from here on out to keep me sane, unfrazzled and somewhat calm over the next 3+ months. Hey, good luck with that, I'm a total freakin' mess you know.

Sleepiness is starting to set in. I made corned beef, fried cabbage and mashed potatoes for supper to celebrate St. Patrick's Day of course. Am I Irish? Nope, not one bit, but it gave me an excuse to make a yummy, fattening, carb-infested, sodium-ridden dinner, and dang it was good. Tomorrow it'll be back to oatmeal and turkey burgers <insert large sigh and eye rolling here>. Time to wrap it up for now. More fabulous blogging soon. Stay tuned.   

NAPS ARE BRILLIANT, THYROIDS ARE STUPID

Three days of blogging so far this week? Can you stand it? We don't really have that much going on around here, but I have some time tonight, so you're getting a blog entry.

Colby and I curled up and took a big, fat nap together today, and I make no apologies for it. After his 3:00 treatment, his heart rate was really low, and he had that sleepy boy look about him. The day nurse left at 4:00 and the night nurse didn't get here until 5:30. So I curled up beside my sweet boy, covered us up with my fuzzy IU blanket, and we took a snooze for about 45 minutes. Do I have laundry that needs to be done? Yes. Do I have a mountain of mail to go through, again? Yes. But sometimes you just have to say screw it, QT with my boy is what really matters.

We didn't mess with any math homework tonight. Actually I didn't set up Colby's eye gaze at all tonight. Bad, bad mama! His speech therapist wants it set up in front of him at all times, and I agree with that. Except for today lol. Again, some days you just have to say screw it. I'll do better tomorrow. Maybe. Probably.  

Hoping the weather hold out this weekend. I want to take Colby to the St. Patrick's Day parade here in town. I have a nurse lined up. We have our green clothes and paraphernalia ready. We've worked out special parking. Can't wait! Rain, rain, stay away.

Hey, guess what? I'm abnormal. That really isn't a surprise, is it? I went to the endocrinologist today and she was like what the heck is going on with your TSH level? Well hell I don't know, lady, you're the one who regulates my medication dosage. It's not the end of the world or life threatening or anything like that. Just frustrating. It's been over 2 years. So we adjusted my medication dosage, again, and I'll go in for blood work, again, in 3 months. I guess the good news is I can still blame my weight gain and fatigue on my thyroid. It couldn't possibly be from my eating habits or lifestyle choices. Nope, no way. Oh, and I can't find my driver's license. I had it Saturday night when I went out. I remember seeing it Sunday morning sitting on the bathroom sink. So it has to be around here somewhere. That'll be my chore for tomorrow while Colby is at school. Locate license.

Colby has about half an hour before his night treatment. I'm going to go back there and we'll do our little bible lesson together. That's what I decided to do for Lent. Spend some time with Colby each day talking about God, being Catholic, praying. It's been very rewarding. Much better than "giving up" something. Seriously, what do I have left to give up? Hope? Haha. Maybe you'll get extremely lucky and I'll blog again tomorrow. We'll see how it goes. Bye for now.

TRYING TO DO BETTER AT BLOGGING

Yesterday Colby didn't get to do Skyping at school, but he did get to evacuate the building quickly! His teacher had been out sick for quite a while, and there wasn't anyone to facilitate the Skyping session. Not that it matters anyway. Here is how Colby answered his questions after Skyping last time. Colby, did you like Skyping today, yes or no? No. Colby, did you learn anything interesting in Skyping today, yes or no? No. Colby, did you enjoy talking with the other students during Skyping today, yes or no? No. There you have it. So at his school they were having an Iron Chef contest. Different classes would go in the Life Skills room, make a recipe, have it judged, etc. Apparently there was a chicken nugget incident that resulted in flames literally shooting out of the oven. Can you imagine getting 100 special needs children out of the building quickly?! Geez. But it was under control easily, and the fire department didn't have to be called. I was glad of that, along with the fact that the kids were outside when it was 60 degrees and not 10. Never a dull moment. We took Colby swimming yesterday. Okay, now that is one thing Colby seems to enjoy. We are all exhausted by the end of the day, though. Getting in the warm water, getting him in and out of the water, giving him a shower afterwards. Lots of effort for Colby to swim and lots of effort for the nurse and me to get it all done. So worth it, though. I love watching Colby move those legs in the water. Go Colby go!

Colby had homework tonight. He has a new math goal. His teacher wants him to be able to use a calculator, which I think is a great idea. He was doing pretty darn good at spelling his name, so we thought we'd switch gears on him. Tonight his homework was to use the calculator on eye gaze (we have the loaner up and running) and say, 2 + 2 =. That's it, just 4 little choices. He calculates about the same as he spells, haha. He wasn't very interested, and after half an hour we decided to call it a night. He did have 2 + 2 at that point. It's a good start.

One of Colby's SMA buddies had his trach surgery yesterday. I've talked to the mom a couple of times. She sounds exactly like me 2 years ago, completely freaked out! I remember the fear of the unknown. I remember feeling that I wasn't in control. I remember thinking just get us out of this hospital as soon as possible. This kid is hilarious, I love him to pieces. Please join me in sending good vibes, prayers and positive mojo their way.  

Well, I guess that's about it. There's really nothing to report on my end. I worked today while Colby was at school. Tomorrow while Colby is at school I have a dr appointment and I hope to sort through some mail and laundry. Woo hoo, I better slow down. Pace myself. I'm going to wrap this up and tuck in my sweet boy. Nighty night, blog readers.

MONDAY MISH MASH

I really don't feel like blogging. Obviously I haven't felt like blogging for quite a while now. Just don't have that writing vibe like I usually do. But I have some time. Colby is back there getting his night treatment and getting his pj's on, teeth brushed, etc. I'm watching "Worst Cooks in America." That show is freakin' hilarious. I'm sorry, but there is no way anyone can cook that horribly. So here goes some blah blah blogging.

Colby had a good day at school today. He answered 15 questions in math, which is awesome work for Colby. Not really sure if they were the correct answers, but he did answer the questions nonetheless. Math is not exactly his forte you know. His teacher has been out the last few days. Usually those days can be a bit chaotic. Colby's PT has worked on rigging up his power chair differently. She moved his switch and he can definitely access it better. Since the weather has been a little warmer, we got him outside to work on driving this past Saturday. He did a nice job. The real pisser came when we turned on Colby's eye gaze and it said Missing Operating System, or some crap like that. In other words, all the info on it went bye-bye. Like when your computer crashes. Luckily Colby's speech therapist is much more prepared and intelligent than I, and she backed up everything. So she called the eye gaze company and said yo, this is the 2nd time in 4 months this thing has crashed. They have sent a loaner and once she downloads everything on it, we'll send Colby's to them. They said they would either fix it or replace it. Thank goodness they're a great company that is willing to fix something. So that's one fire put out before it became an inferno I guess.

Dead fish over the weekend. Yep, had to do the big flush for the black bug-eyed. Stick a fork in the aquarium. They're all gone now. That's 3 fish in 3 months I've somehow managed to murder. <sigh> I found some sea monkeys down in Colby's toy box. Maybe we'll try those next.

On a lighter note, we got a trach delivered today. The CORRECT size trach. And Colby's next trach order has been placed and they are currently being made and sterilized. Bing bang boom. At least that has been a smooth process this time around.

Ok, time to tuck in sweet boy and hit the hay. More blogging soon. I'll do better, I promise.