THE LATEST AND GREATEST WITH US

I didn’t realize it's been so long since I've blogged. My apologies. What can I say, I get busy sometimes. Don't judge. So I'll do my best to catch you up.

We've had some wonderful, fun, super duper stuff going on, along with some not-so-good, stressing me out, frustrating the freak out of me stuff occurring. Today I'd like to blog about the wonderful, fun, super duper stuff. I'm sure you'd rather hear about that anyway. The #1 wonderful, all important, super duper thing: Colby is healthy. Knocking on wood, letting out a sigh of relief, crossing my fingers, and would rub on a rabbit's foot if I had one. That's really what matters first and foremost. You know the saying, if Colby ain't healthy, ain't nobody happy, or something like that. But anyway, he's doing great and I'm so thankful for that. Lots of SMA kiddos have been fighting sinus gunk, upper respiratory crap and hospital stays. We've been able to avoid it so far this season. Hope that streak continues.

Our Easter was great for the most part. The ex came over last Thursday and decorated eggs with Colby. I swear when that man opens his mouth and speaks, I have no doubt why we're no longer married. I could have eaten nails by the time he left, but Colby enjoyed it, and that's what matters. Note to self, don’t use the glitter packet included in the decorating kit, it gets everywhere! Saturday we packed up and went to Mom and Kenny's for some Easter festivities. The weather was perfect, so Mom and I took Colby for a long walk around the subdivision. Later that night we assembled and decorated our first ever bunny cake. Mom, Colby and I were slapping icing, coconut and jelly beans on that cake like crazy fools. Colby actually paid attention and participated. That was a nice change. Saturday night the rest of the fam came over and brought their new, adorable boxer puppies for Colby to see. They were the cutest little things ever, until they started chewing on Colby's ear and vent tubing. We didn't make it to church on Easter morning. Mr. Colby was up jabbering at 5AM, so I was up with him for over an hour trying to get him back to bed, which he never did by the way. After 6AM, I was like screw this, I'm going back to sleep. Then I overslept, and we couldn't get up and ready for church on time. My mom even ironed Colby's slacks and shirt for church, and we didn't go! Oh well, that's okay, we're going to a wedding this weekend, and he can wear his crisply pressed outfit then. Then the fam came back over and we had lunch. Then it was time to pack it all back up and head home. It was a lot to cram into a 28-hour stay, but I'm so glad we went. It was definitely worth the hassle of packing, unpacking, packing and unpacking again.   

Yesterday Colby had a field trip to Camp Crooked Creek. His school goes every year, but for some reason this was the first time Colby has been able to go. It's about 30 minutes away, so I thought it would be best if I tagged along on this adventure. So the nurse, Colby and I followed the bus down there. Turns out it was a beautiful day, and I was really impressed with how the camp was run. The volunteers were really sweet. Two thumbs up, CCC! They had adapted archery, so Colby was able to shoot a bow and arrow for the first time. Then he had assistance with shooting a BB gun at aluminum cans. So nice to see him doing "boy stuff." He also went fishing. That was a bust, no catch for us. Did an arts and crafts project. Hung out in a drum circle and got a chance to play the instruments. Then it was time to head home. Overall it was a great experience, and I hope he gets to go again next school year.

Today was a typical busy Tuesday. Colby is still Skyping with my niece's class. I love Colby getting exposure to other, more typical classrooms. Sometimes he acts like he likes it, sometimes he doesn't, but that's my Colby. Tuesdays are also swimming days, and that leads to sleepy Tuesday nights. That therapeutic water wears us all out.

So that about sums up the last few days for us. Very busy. Very fun. Very thankful for the things that are going right in our lives. Tomorrow's blog will be another story. Just kidding. Yes, we do have a couple of flies in the ointment, but I'm trying to get them worked out. Trying. Not successfully, but sure am trying. That'll be tomorrow's blog. Come back for more then. Bye for now.

YEP, IT'S DEFINITELY A MONDAY

My advice to you - don't call me today, you just might get bitched out. I've already "had words" with 2 people from 2 different companies. I'll add a 3rd to the list if necessary or if desired. Of course you can guess the 1st one, yep, good ole Apria Healthcare. After 3 phone calls and 2 wrong shipments, the idiots still don't have Colby's suction catheter order correct. You know, the same exact catheters we order every single stinking month?! Finally talked to a "supervisor". Oh yeah, that has helped so much in the past! Can't wait to see what gets shipped to us next (insert big eye roll and sigh.) Asshats. Argument #2 was with someone at the nursing agency. But he had it coming. I told/warned him weeks ago not to call me regarding a certain topic, and he did it anyway. Not cool, and not really smart. Especially since I hadn't hung up with Apria even an hour before that. So he got an earful, too. I promise I'm not a mean, unreasonable, rude bee-otch. Really I'm not. For the most part, I'm quite pleasant, reasonable, flexible and professional. But if you continue to screw up with the stuff my kid needs over and over again, you're going to see the not-so-pretty side of me. Push me, and I will push you back harder. Enough said.

Looks like we're going through with Colby's infusion here at home. At least that's what Endocrinology is telling me, so apparently they've agreed to it. They've contacted the home health agency that does Colby's port flush to arrange for them to do the infusion. The medication used for the infusion has to be shipped directly to us from a specific pharmacy, per insurance, and the infusion may require a pre-authorization. But that shouldn't be a problem. Sounds like the Endo nurse is on it. I'll follow up with her in a couple of days to check the progress.

I've been in contact with Colby's pulmonologist. Would really like to know exactly what type of surgery he's having in 79 days! But who's counting, right? The pulmonologist and ortho surgeon are meeting Wednesday morning, so I guess I'll have an answer by the end of the week. I started wondering if they change the type of surgery Colby has, does that mean the surgeon will or won't change and the date of surgery will or won't change? Hopefully I'll have those answers by the end of the week, too. Flip, this surgery will be the end of me before it's all said and done.  They're coming to take me away ha ha. They're coming to take me away ho ho hee hee ha ha.  

Finally got my taxes done. Well, let me rephrase that. My BFF Kim came over last week and did my taxes for me. Glad to get them done, and am pleased with my refund. I'll pay her with the usual payment, a fried pork chop and mashed potato dinner and/or a trip to Homemade Pie Kitchen. She's way better than H&R Block, and much cheaper, too. Thanks, Kimmie, for taking the time to do my taxes, again.  

Today was Colby's 1st day back to school after Spring Break. He had a crappy break now that I think about it. Our only venture was a 2-day trip to Cincinnati for doctor appointments. That hardly counts as a super duper fun road trip. We tried to get together with another SMA family over the weekend, but it wasn't meant to be. Just too darn cold that day. The activity we had planned was outside, and the weather wasn't cooperating. So yeah, Colby's Spring Break pretty much sucked. Sorry about that, kddo, but we had to do what we had to do.  

Want to hear Colby's very punny joke? I bought him a joke-a-day calendar for Christmas. For the most part, they're horrible jokes. Not funny at all, but every now and then one is good. So here's his very punny joke for last Saturday: "I used to have a fear of hurdles, but I got over it." Pretty cute, huh?

Okay, I'm finally starting to calm down some after today's you're-getting-on-my-last-nerve phone calls. I think the giant glass of chocolate milk I just chugged down helped. What is it about chocolate milk that soothes the soul? Or is it only my soul it soothes? Either way, it was a darn good beverage-guzzling experience. More blogging when I have more to report/gripe about. That's all for now. Later, taters. 

GRAB A SNACK - LOOOOOONG POST

I'll tell you about Colby's pre-op appointments and try not to bore you with a bunch of blah-blah medical/SMA talk. Here it goes:

I decided we should weigh and measure Colby before heading to these appointments. That was a good call on my part. Too much trouble weighing him with clothes and splints on, trying to weigh the power chair with him in it, then with him out of it, etc. He weighs 86.4 lbs and has grown another 2 inches. He's 58 inches tall now! Holy smokes, what a big boy.

Endocrinology: had this appointment Monday afternoon. From an endo standpoint, Colby gets the okay for surgery. Colby has low bone density and has been getting infusions at Cincy Children's to help with this. The doc and I discussed Colby getting another infusion before surgery. He has had 3 infusions with no problems and/or side effects, so I think I have her talked into letting him do the infusion here at home. The endo nurse has already called me about getting it set up. Will update with this situation as needed.

Monday night we stayed at a hotel near the hospital. The hotel doesn't have a restaurant, so I sent my dad on a get-us-some-supper quest. He asked what I wanted. I said I didn't care, just bring me back food. He went to a local restaurant and came back with spinach/artichoke dip and chips, along with potato skins. Excellent supper. Good job, Pop.

Tuesday our first appointment of the day was with Anesthesiology. Anyone going under for surgery is scary, but it's particularly scary/worrisome for an SMA patient. But the nurse practitioner and anesthesiologist who talked to us were very thorough. They answered my questions before I even had a chance to ask them, and I felt really good after speaking to them.

Next was Neurology and Nutrition. First the nutritionist came in. We have a nutritionist locally, but keep Cincy in the loop of Colby's diet, calorie count, nutritional intake, etc. KUDOS to Colby's nutritionist here in town. The Cincy nutritionist went on and on about how perfectly Colby has followed his growth chart all these years. She took one look at Colby and said, yep, you must be doing something right. She wants to up Colby's protein intake between now and surgery and also 6 weeks post surgery. She had some suggestions for that. I'll be in touch with Colby's wonderful, fabulous, kickass nutritionist here in town and we'll discuss. The neurologist also commented on how big Colby is getting. How healthy he looks. Complimented me on the care we all give him. Made me feel warm and fuzzy all over. So from a neurologic standpoint, Colby is okay for surgery.

I don't know why in the world getting labs and hematology issues are such a clusterfuck with this kid, but they have been and continue to be. We were told since we would be in Neurology for a long time, the VAT (vascular access team) would come to us and draw all the labs Colby needed. Super duper. So the neuro nurse calls to let VAT know we're there. VAT says nope, we don't have those orders. Fantastic. Time for good ole Plan B. More about blood draw later.

Next was Cardiology where Colby had his Echo and EKG. Easy peasy. We were in and out of there in no time. Don't have the results yet, but not looking for any complications in this area. Never had any before. So I'm assuming Colby should also get the okie dokie for surgery from Cardiology.  

We had some time before Colby's last appointment, which was with the  pulmonologist. So they sent us to the TRC (test referral center) to get the labs done. <sigh> They were all ready for Colby, sort of. We walked in and I noticed she had one of those blue bands, meaning they planned on sticking him and getting the labs peripherally, not through his port. I said, uh nope, not happening. I reiterated, again, that Colby has a port, that he was a horrible stick, and that we were told his port would be accessed and the blood work would be drawn from the port. See what I mean? Another miscommunication on someone's part! We were able to get Colby's MRSA screening while we were there, so I guess that stop wasn't a total loss. Come on people, let's get this figured out, please and thank you.

Last but not least was Pulmonary. I know this update is getting long, stick with me, it's about to get interesting. His appointment was scheduled for 3:00. We got there right at 3:00. Pulmonologist rolled in at 4:20. I was on a mission to get Colby's labs done. They paged someone else from the VAT to come get the blood work. I kept having the pulmonary nurse page the VAT. No way were we leaving that hospital without the labs getting done. So they come in, finally, to get the labs. Colby starts crying. I think he was just done for the day. He is a total stud and did great/fabulous up until this point. I don't blame him, heck, I had only one nerve left and VAT was standing on it. Much more and I would've been crying, too, or at least cussing and throwing my famous Amy hissy fit. So there I am, trying to talk to the pulmonologist, comfort Colby and talk to the VAT all at the same time. They drew 11 vials of blood for Colby's lab. Finally got that done!

But wait, there's more! Here's the shocker. The pulmonologist says maybe Colby doesn't need VEPTR surgery, maybe he needs spinal stabilization/rod surgery. Holy crap on a cracker. ALL we have talked about with Ortho for the last year is VEPTR, now this?! Thank goodness I had recently spoken with another SMA family, and the same pulmonologist told them the same thing for their son. So at least I had heard of this before this appointment. I said look, you all have 85 days to figure this out! Needless to say my near future will involve research and conference calls with the pulmonologist and ortho surgeon at Cincy to figure out the best option for Colby. Nothing like throwing me for a loop after we'd been to appointment after appointment, and my poor little brain was fried. The best way to describe me after that is "mental zombie." Finally got out of that hospital at 5:15.

Went back to the hotel. Sent Dad on a food run. This time he came back with beer (such a good man) and a quesadilla. I didn't have to cook it. I didn't have to think about it, so it was the most delicious quesadilla I've ever had, ever. We slept in until 8AM this morning. Got Colby up, packed up, checked out and got home about 1:30. The rest of the day has included unpacking, checking phone messages, returning phone calls and napping.

And there you have it. Our last 3 days in one very long blog entry. Not exactly a super fun way to spend Spring Break, but I'm ready to move forward with this surgery. I'm glad we got the majority of these pre-op appointments out of the way. Colby did such a great job. He was examined, listened to, talked to, talked about, moved from location to location, taken in and out of his power chair I don't know how many times. And the whole time he was a trooper. The only problem he had was the crying with the blood draw, and who can blame him? People coming at you in gowns and masks poking you and getting your blood. So very glad that day is over. I've been dreading it ever since the appointments were scheduled. More blogging soon, but for now I need to give my fingers and brain a rest! 

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.