HAPPY 2017 IS GETTING HAPPIER

Well, the start to 2017 was totally sucky. But we are doing much better now. Thanks to everyone who called, texted or asked on Facebook how Colby was doing. There's no doubt in my mind we are surrounded by so many people who love and care about us! Took Colby to the pediatrician here in town Tuesday. I was leery because his regular doc was out of the office, so we had to see just some other doc in the practice. I really liked him! Turns out Colby had an ear infection. Not really sure how. We didn't go swimming last week because I was sick. Didn't go swimming this week because Colby was sick. But anyways, he's on Omnicef for 10 days. I think we caught it just in time before it started moving down into his trach and lungs. So I've been getting up through the night to do a respiratory treatment for Colby. Nebulizer, IPV, CoughAssist, the whole shpeel. For 2 nights he was up with a high heart rate and low oxygen. For the last 3 nights we've been doing extra treatments. How much sleep are we not getting this week?! But if it helps Colby get better, that's fine. I'll do the same tonight, then reevaluate tomorrow based on how his numbers hold up, the color and amount of his secretions, etc.

I've made the decision to put Colby on home hospital for school during the winter. I'm one of the few SMA parents I know of who sends their kid to school during the cold, germ-infested winter months. Colby has never been sick and in the hospital once during the winter. So weird. He's had major illnesses in September, July and March, but not during the winter months. And there's this little voice telling me, hey, don't push his luck. We could use the rest, that's for sure. There are lots of things we can do with him at home that are educational, if we choose. Plus he'll have a teacher come out for a couple hours each week to bring him his school papers and work on them with him. Pretty sure I'll never regret the decision to spend more time with my kiddo. I've already told him swimming will be decided on a week-to-week basis, based on weather, how he's feeling, etc. He probably didn't like that. We've also always taken him to the pool in the winter. Yes, I know, I'm one cra-cra mama. Never claimed not to be!

We are still without a bunny around here, but it's not my fault, I'm trying! I e-mailed the lady at the rabbit house. She e-mailed back the next day saying I needed to fill out the online application, which I did immediately. Now I haven't heard from her in almost 2 weeks. I called her once, left a voice mail, and yesterday sent her another e-mail. Uh, hello, we're in need of a bunny to put in this ginormous cage set up in the living room! I think it's supposed to be warmer next week. I guess if she doesn't call back, we'll run Colby up to the local pet store to pick out a rabbit.

I have some happy news to share. Last year my endocrinologist found a cyst in the bed where my thyroid used to be. Okay, that's obviously not the good news lol. She sent me to a neuroradiologist. He thought the cyst was nothing to worry about, but wanted to do follow-up a year later. Went to the neuroradiologist yesterday and now he's almost totally convinced the cyst is only a cyst and not a recurrence of cancer. He's calling it a “post surgical cyst thingy,” very scientific term isn't it. The mass/cyst doesn't look suspicious and has shrunk in size instead of grown. So zip-id-eee-do-dah, I'm still cancer free. I could have reached up and kissed him right on the mouth, but managed to hold my composure instead. He wants to look at it again in a year just to be on the safe side.

But the really, really, big, huge exciting news is that with any luck, and work and coordination with Cincinnati Childrens, the drug company, Colby's insurance company, etc, and with the pharmacy gods smiling down on us, Colby will be able to receive the recently approved drug to treat SMA. This is such a huge deal people! After 14 years, there is FINALLY some hope that the progression of his SMA will stop worsening, and maybe, just maybe, he will gain back some strength and mobility that he has lost over the years. The wheels are in motion. Best case scenario, 2-3 months. Regardless, Colby will be receiving a drug to fight his SMA in the near future. I'm flabbergasted this has come to fruition. I honestly never thought a cure or treatment would be available during Colby's lifetime. Never been so glad to be wrong about something in my whole life! I'll keep everyone updated, of course. Right now I've done what I can do. Signed a consent form and signed a start form. Next Colby's neurologist fills out the rest of the start form, submits it to the drug company. Then Cincinnati has logistics to figure out like which department is administering the drug, do they need to hire more people, stuff like that. Amazing. Simply freaking amazing.

Time to tuck in Colby and go to bed so we can get up at 2AM for a respiratory treatment. Oh goody. G'nite all.

HAPPY NEW YEAR PEEPS

My oh my! I haven't blogged since November 16? I've had a couple people ask me if anything was wrong because I haven't updated lately. I guess it's a combo of being busy, preoccupied with any number of other things or I just flat out haven't bothered to do it.

Hard to believe another year has rolled around huh? Just doesn't seem possible. This was our 2^nd Thanksgiving and Christmas in our new house. Unbelievable! We had 12 here for Turkey Day. I was on top my game. Had all the dishes listed so we didn't forget to set something out (who does that?!) Even had times written down so that everything was done at once. Didn't want the hot stuff getting cold and the cold stuff getting warm! Just one tiny little problem. The turkey was under cooked! (I wasn't responsible for the turkey, just sayin') I go in to get Colby up in his wheelchair only to return to a 16-pound turkey rotating/cooking in the microwave. It was kind of funny I guess. Better to have a microwaved turkey than food poisoning, that's my theory.

Christmas was fantastic. Actually, I was sad to see it come and go. Seems like we work, and plan, and decorate, and bake, and shop, and wrap and then boom, the family rolls in and in 4-5 hours it's all over. Took Colby to the Hosparus Christmas party again this year. It's such a great time and the people who organize the party do a fabulous job. It seems to get better every year! Colby got some awesome presents this year including a bowling shirt with his name on it, glow light and items for his fish tank, a couple of board games, movies, clothes, gift cards. Mama Santa is getting Colby a bunny rabbit. Oh my Lord what have I done? On Christmas he unwrapped all the stuff for the cage – hay, feed, toys, etc. Next step was to assemble the cage, which we've already done. Next step is to pick out a bunny! Turns out they have shelter houses for rabbits just like they do for dogs and cats. Did you know this? I sure didn't. So I've filled out the application, and I'll call them this week to see if we can set up an appt to look for our future house pet.

Colby had 3 days of appointments at Cincinnati Childrens Hospital the week before Christmas. By the end of Day 3 we were all pretty much exhausted. But overall the trips went well. Up and back on Tuesday. Then up on Wednesday, stayed overnight and back to the hospital Thursday morning for appointments all freakin' day. Overall the reports were good. No major surprises. I need to call and schedule an appointment for Colby to have a broncoscopy sometime in the near future. Need to talk to the nutritionist to cut about 50 calories daily out of Colby's diet. My sweet little boy is no longer little! He weighs 101 lbs and is about 4' 10” now. Holy crap.

I would say I'll make a New Year's resolution to be more consistent with blogging, but let's get real, we all know better than that. I didn't really make a “resolution” to do or not do something this year except for being wasteful. I want to be conscience of not wasting anything. Don't waste water or electricity, don't waste time and energy on people who don't deserve it, don't waste my time with the never ending what-if's that penetrate my brain, etc. Anyone know how to just turn your brain off sometimes? I need to know that technique. Geez.

And of course my main focus will be to keep Colby as healthy and happy as possible. He's such a good boy! He deserves so much better than the shit cards he got dealt. I'm debating on whether or not to send him to school during the winter months or put him on home hospital schooling. Of course the weather has been so warm it hasn't really been an issue yet. I don't know. We'll see.

Okay, that's all I've got. I'm looking forward to 2017. I think some really wonderful things could happen this year. May take some hard work and stepping out of my comfort zone, but hey, what else is new?!

FEELING NOSTALGIC - and very, very humbled, lucky and blessed

November 7 marked the 1-year anniversary for Colby and me being in our beautiful new home! Is that even possible?! This past year has flown by, and we've already made so many wonderful memories here. As I have time, I'd like to share each of the rooms in our house, before and after pics chronologically. Today, join me if you will, in the living room. Enjoy! And oh, by the way, I took A LOT of pics during the demolition and rebuilding of our house. But this house really is amazing! A total transformation!

Hideous, filthy carpet. Ugly, dingy wallpaper. This wall was completely removed to open up the floor plan.

The previous owner "fixed" the huge leak in the ceiling by adding a drop ceiling. Shaking my head.

Demo begins! Carpet ripped up. Drop ceiling removed. Wallpaper torn off the walls.

Plaster and lath, lath and plaster. Obviously we were waiting on the dumpster delivery at this stage.

Demo day! Knocked out the ceiling. This is upstairs looking down into the living room at the hardworking family and friends below removing more plastic and lath, and lath and plaster.

Demo'ed. Debris removed. Ready for rebuilding.

Spray foam insulation. And the beautiful fireplace!

Drywalling begins. Told you this was all well documented! ha.

More drywalling. Doors waiting to be hung. Tile waiting to be tiled.

Gorgeous paint colors! Still love the Bleeker Beige and Composed colors we chose.

Seriously, doesn't look like the same house, does it!?

And I still love the beautiful hardwood floors we chose, although they sure aren't easy to keep clean. I should invest in Swifter stock.

All brand new! And spacious! And beautiful! Ready to move in!

2016 was our first Thanksgiving in our new house. We had 18 guests and room for everyone. Colby and I are definitely blessed beyond belief!

OCTOBER FUN CONTINUES

So I've started this blog three different times. Obviously I'm having a little trouble with focus this evening. Do you watch Superstore? Because if you're not, you should be. It's freakin' hilarious. I'm trying to watch that and type at the same time. Not working out well for me. I've had a lot of people tell me to watch Speechless, but I haven't seen it yet. On my to-do list.

I've had a headache for about 10 days straight. Super not fun. On a pain scale from 1 to 10, around a 6-7. Sometimes a 7.28459 haha. Actually today it's better, so maybe it's finally clearing up. Change in weather? Stress? Both? Who knows. Just ready for it to GO AWAY!

No secret that we love this time of year. Getting geared up for Halloween. Colby isn't going trick-or-treating, he's too old. But we have other stuff planned. His school is doing two days of festivities this year, one tomorrow and one Monday. Stay tuned for one funny costume and one scary costume. Saturday we're going to St X High School for their second annual baseball Halloween thingy. The baseball players and coaches dress up in costume. They play a scrimmage for a few innings. Then they hand out candy and kids trick-or-treat around the bases. Colby will be helping his St X baseball buddy Chris pass out candy. We haven't decided on a costume for that event yet. Chris is going as Elvis. I really wanted Colby to be a peanut butter and banana sandwich but just didn't have time to pull it together. We haven't decided what we're doing Monday. We've been invited to a Halloween party. I think Colby and I would have a great time if we went. But, I also kind of want to stay home. This is our first Halloween in our new house. I would like to see/meet some neighbors. And maybe a nice firepit. We'll see.

Colby is getting over a knee injury. Not sure exactly what happened. His nurse was giving him a hamstring stretch. She said his knee popped, then she felt it “give way.” Ah shit. It was really swollen and putting off heat earlier in the week. We ended up not going to swimming on Tuesday. I called all three of the PTs he has had over the years, along with his pediatrician. I decided the best plan of action was RICE and keep a close eye on it. Didn't really want to drag him out for an x-ray unless totally needed. It's much better now, thank goodness. He's not as whiney and the swelling has gone down, so woo hoo for that.

Loving this weather and getting Colby out to do stuff. We went to the zoo a couple of Sundays ago. Good stuff. There was a really nice zoo volunteer who made sure Colby got up close to see the baby gorilla. I don't think people realize it when they cut in front of Colby sometimes. This past Sunday Colby got to participate in Special Olympics bowling. His St X peer buddy was his volunteer helper. Colby did a darn good job. He used his switch to make this trigger drop so the ball would roll down the bowling ramp. The trigger kept getting caught on a big piece of tape and/or plastic, so once we saw the trigger drop we would gently help the ball roll down the ramp. Colby's score was high enough for him to advance to state! We have to get that ramp fixed between now and then! I want him to be able to make the bowling ball fall all on his own. Our first Special Olympics event, and I was very impressed. Can't wait for state competition in December!

And now for some really, really cool news. If you live here in Louisville, listen up! Starting next week, the first week of November, start looking for Louisville Magazine. Pick up an issue, and pick up one for us, too. Colby has been chosen as one of Louisville Magazine's Super Kids in 2016!! This is so cool! They choose around 25 students in the local area. Anything from students that do photography, ballet, run non-for-profits, etc. The counselor at Colby's school nominated him, telling the magazine about all he has overcome over the years. And they chose my sweet boy as one of their Super Kids! Fantastic! We went for his photo shoot a couple weekends ago. Just a head shot, but OMGosh, I can't wait to see him in the magazine! Of course we all know how super Colby is, but now we'll be able to see it in black and white. Isn't that just the coolest thing ever?

Okay, it's now 10:23. I started working on this blog entry at 8:something. Sorry, many shiny objects to distract me. So that's the update for now. Mostly good stuff going on around here, and I'm so very thankful for it. You can never, ever take the good days for granted. If I've learned one thing in this life, it's that.

FUN, FUNNER, FUNNEST

Sorry I haven't blogged in so long, but quite honestly, we've been having too much fun! It's so nice to say that Colby is doing well. Staying healthy and out of the hospital, just rolling along, doing his thing. I'm so proud of him. Such a stud he is!

So what all have we been doing? Heck, what have we not been doing?! Every year Cincinnati Childrens offers Reds tickets to vent-dependent patients. We had never been until this year. It was fabulous! I'm so glad we went, although we were all super tired doing an up and back trip to Cincy. We had four tickets, so Colby, nurse and I drove up. We met Colby's St. X buddy up in Cincy – he goes to college at Xavier now and was available to go to the game with us. I love that the St. X kids have stayed in touch with Colby. We were able to park right under the stadium, the same parking garage as the players, so that was awesome. We were all under cover on the party deck. There were two other SMA families there, so it was great visiting with them. And, Colby got to meet some of the players! It was an awesome day, and the Reds actually won for a change. We'll definitely be doing this again if given the chance.

I decided we needed to have another cookout here at the house. I mean after all, we have a party deck, too. Tieing in my love for autumn, I called it an end of summer soiree. Printed out the invites on paper trimmed in Fall leaves. Planned on serving chili, lighting our fire pit and making smores. Yeah, well, it was 92 freaking degrees that day! But hey, the party went on, just had to switch gears. I ended up making homemade sloppy joes and chicken salad. No fire pit of course. The nurse and I rigged up Colby's Super Soaker water gun so that he could squirt our guests as they came out on the deck. Colby thinks that's the funniest thing ever, and I didn't think anyone would mind. It was hilarious to look around and everyone had this wet stripe across their chest or belly. Good job, Colby. Next year if I have another bye Summer, hello Fall soiree, I'll move the date up a week or two.

Then the next day I went to a Colts game! Colby stayed up because it was girls' day out! I went with my BFF's from grade school. I mean Amy, Kari and I go waaaaaay back. I had asked for cash for my birthday to pay for my ticket. Kari and I shopped around for weeks to find the best tickets at the best price. It ain't cheap going to an NFL game, that's for sure. I'm so glad we went. I hadn't been to a Colts game in several years. And the Colts won! The only game they've won this season. So I think it's safe to say we should be attending the remaining Colts games this season. Don't you agree? Someone send us tickets so we can go and the Colts will win again. Thanks.

Last week Colby was on Fall break from school. No sitting around doing nothing for us! I pretty much invited us down to our friends' house, about an hour and half drive from here. The same SMA family we went and visited a couple of years ago. We all had a fantastic time! Our kiddos kept us busy for sure. We got there Friday afternoon and left late Monday morning. We did as much stuff with the kids as we possibly could, working around feedings, respiratory treatments and range of motion sessions. Getting two SMA kiddos up, ready and loaded for the day – whew, lots of work. So worth it! Friday night we went over and TP'd the neighbors house. Hilarious. Not the first time the other family has TP'd them! I guess it's an ongoing thing. We made sure the owners came out and “busted” the kids. They have the nicest neighbors. We also played Wii bowling. Colby and I sucked at that. Also a couple of games of Uno Spin and Pie Face. Hmmm, guess what will be on Colby's list to Santa this year? Saturday we went to feed to ducks at a local park and walked around Halloween Express looking at all the spooky stuff and getting costume ideas. Sunday we went to Scarefest, a huge convention of all things creepy, gory, scary and frightening. The people there were so nice to our kiddos! They actually remembered Danielle from last year when they went. The first few minutes we were there Colby was freaking out a bit. I thought he was going to have a meltdown. But he snapped out of it. The kids got their faces painted, got to pet a fox and see a wolf, and met some very interestingly-dressed people. Hoping our friends invite us back to Scarefest next year!

Here are some pics of our latest adventures. I'm very happy to share that things are going well around here. There are the usual bumps in the road with getting supplies, dealing with insurance, etc. Oh how I continue to dread making calls for stuff like that. But it's all part of it. Overall we are staying healthy and loving life right now. Can't ask for much more than that, can we?! 

GOT SOME DUCT TAPE I CAN BORROW?!

This good mood I'm in? I'm determined to stay in it. After all, life is too short not to be happy, or at least try to be happy. Shit's going to happen. I can't prevent that, and I certainly can't control it. But I can control how I react to the shit happening. I've really been working on that lately. And of course we know I'm mainly talking about the trouble I have getting Colby the supplies and equipment he needs. It's all part of taking care of sweet boy, so I better suck it up and deal with it. Trying! I'm really freaking trying!

The last couple of months have been brutal for Colby's equipment. Seems like every week something else breaks. Getting new stuff approved by insurance has been hit and miss. One morning last week I was in the middle of suctioning Colby and boom, his suction machine stops suctioning. Not cool! That was an easy fix. Called the company that we use for Colby's respiratory supplies, and they overnighted one to us. About a month ago, we noticed the lid on Colby's feeding pump was getting harder and harder to close. Finally one of the hinges broke. We were using a rubber band to hold the feeding pump together so it would work. Nothing like a little redneck ingenuity. That was another easy fix. Called the company we use for feeding supplies, which of course is not the same company we use for respiratory supplies. Another feeding pump was shipped about 3 days later. Boom! Success. Colby has had this really cool alternating pressure mattress for years. Well guess what, yep, it went out over the summer. Getting a new one took some work, but that issue also eventually got resolved. That leaves Colby's wheelchair, a new Mount'n Mover stand and his eye gaze that all need repaired and/or replaced. Lord help me. We have been waiting, and waiting, and waiting for wheelchair parts and labor to be approved. This mess started in March, yes, that's correct, six months ago! Oh no problem, we'll just keep changing the duct tape that holds Colby's power box onto the chair as needed. Seriously, that whole box is about to crap out. I've been calling the wheelchair company twice a week for the last four weeks to check the status. And I'll continue to call twice a week, every week, more if needed, until it's approved and Colby's chair is fixed. Hey, that's just the kind of mama I am. Furthermore, Colby's speech therapist ordered him a new stand for his eye gaze months ago. It's called a Mount'n Mover, and we mount it on his wheelchair to hold his eye gaze when he's sitting in his chair. Again, lots of time has gone by. Waiting for insurance approval. Waiting, and waiting, and more waiting, only to have insurance deny it. Fudgy McFudge Fudge!!! And now, as of five days ago, Colby's eye gaze isn't working. O.M.G. This one is going to be a total mess. The eye gaze isn't under warranty anymore, which means we can't get a loaner. I can't find the original box and shipping material to send it back. Blah, blah, blah.

But am I going to let any of this get on my nerves? Heck no. Not worth it. I mean yes, Colby is worth it, of course. I'm just going to keep making the phone calls, do the follow-up and keep my fingers crossed that the power chair and eye gaze can be fixed in a somewhat timely manner. My new mantra: I refuse to let this stuff get to me. How's that for a new attitude? Yeah, I'm sure I've said that before. Need to remind myself everything will be okay. Colby will get his power chair and eye gaze fixed, somehow, some way. Hoping it's sooner than later.

But on a side note: nursing is going really, really well around here. Hate to even say that, might be jinxing it. We have 2 full time and 2 part time nurses who work specific shifts on specific days. We only have one shift opening per week. I can't tell you the last time we had this much coverage. Probably never. Very pleased will all our nurses right now. They all do a great job caring for Colby, and they seem to accept my cra-craziness rather well.

Okay, enough for today. I've done a lot of phone call making and e-mail sending this week. I think tomorrow I actually may get the day off from it all. I won't know what to do with my time! Kidding! I have laundry and yard work waiting on me. Good night, blog readers.

MY NORMAL ISN'T YOUR NORMAL - but it's ok

What does it mean to live a “normal” life? Everyone has his/her own idea of what it looks like or should be. I'm sure many people look at Colby and me and think holy good gravy, what complicated,

most un-normal lives they lead! But actually, lately Colby and I have what I consider very normal lives, and I'm loving it. I know I complain a lot about issues with insurance, and oh yes, it drives me completely bonkers. But overall Colby and I are so blessed to have the lives we do. It's hard not to be paranoid about that. Seems like I'm always waiting for the other shoe to fall, for something to go really wrong. As it has so many, many times in the past. For now, things are going damn good, and I'm trying my best to chill out and enjoy it.

For example, today we took Colby swimming. Then took him to Great Clips for a haircut. Then home to get a bath and get on his hand splints and AFO's for the day. That's a perfectly normal day for us. Colby is able to go to school 4 days a week. It's on a very shortened schedule, he doesn't particularly like it, and a one-on-one nurse attends with him. But still, he gets to ride a big yellow school bus and go to school without his mommy tagging along. To me, that is normal. Colby has done amazingly well since having his trach surgery, followed by his spinal fusion surgery a couple years later. I cannot find the words to describe what a difference these two surgeries have made in our lives. Colby was sooooo sick there for a while. A 37-day hospital stay, a 39-day hospital stay 5 months later. Really horrible stuff. Life threatening, we almost lost him more than once kind of stuff. And I'm not saying that might not happen again some day. I pray it doesn't. But do you know how many times Colby has been admitted to the hospital for a respiratory illness since these surgeries? Once, for 11 days, a couple of years ago. To me, just staying out of the hospital lets us lead “normal” lives. When I hear of another really sick, hospitalized SMA kiddo, my heart breaks for the family. It's awful. I sure as hell don't miss those days. So if sweet boy can stay “healthy” and the only reason we go to Cincy Children's is for scheduled appointments and a couple of simple procedures, fine by us.

And this house?! Yes, absolutely, positively, we still love, love, love everything about this house! Didn't love it too much when the AC went out, but that's all in the past now. I was giving Colby his bath tonight and starting thinking how wonderful it is to have the facilities and accessibility Colby needs in our home. Everything about this house is still beautiful and perfect. Wouldn't change a thing. Ok, that's a total lie. I'd give anything if this sewer line project that has every single street in our neighborhood jacked up was over, but hey, you can't have it all. The house itself, still wonderful and perfect. I'm able to transfer Colby if I'm by myself, and that gives me a sense of normalcy.

There you have it. I'm so happy Colby is staying healthy. We have a perfectly made, beautiful home that allows us to more easily care for Colby. Feeling so grateful and thankful right now! Looking forward to hopefully more normal-ness in our near future!