BABY NEEDS NEW WHEELS

The time has come. No use putting it off any longer. Not sure how it's going to happen, but it will happen. So here's the poop: we need a new van. Not a “new” van, a different van. Something bigger with less mileage than the minivan we currently have. Our van has served us well, but Colby has outgrown it. Plus it's starting to rack up some miles - 112,000 miles currently. Time to kick in the fundraising again! Hey, if we can raise the money to help us get a house, we can raise the money to help us get a van. That's my thought anyways.

So you may be asking, how much money is needed? I don't know. I have no idea actually. The ideal situation would be we get a bigger and better van for Colby and a little, cheap car for me to drive to work, run errands, etc when I don't have Colby with me. Even if I don't get a car and we get another van only, I can't imagine we'll find something decent for under $30,000. Ouch, I know. Trust me, I know. Nice wheelchair accessible vans ain't cheap!

The next question you might have is, when are we getting this van? I don't know. Again, I have no idea. I'm predicting it will take a long time to find the kind of van we need. I also don't know exactly what I'm looking for in a van just yet. Better storage, room for more passengers, less mileage – that's as far as I've gotten. There are advantage and disadvantages to rear vs side entry, lowered floor vs raised roof, etc. Gives me a headache just thinking about researching to find what we need, then actually finding it.

All I know is our current van is aging and is too small to meet our needs. I also know there is no room in my budget for a car payment, so the money will have to be upfront to purchase. And how do we come about getting this money? Work our booties off for it, that's how. Fundraiser after fundraiser after fundraiser. Been there, done that, happy to do it again to get what Colby needs. I think after this venture is over, I should hire myself out as a professional fundraiser. I'll also Google/research any grants or not-for-profits that might be out there to assist in financing. Or win the lottery, which would require actually playing the lottery. Or, if anyone out there is looking for a good place to drop $30-$40,000 – I know a kid. Stay tuned, more fundraiser fun and details coming soon!

CRA-CRA WEEK LAST WEEK, NOT SO MUCH THIS WEEK

Last week is a total blur. Monday a friend of mine came over and we loaded up the table and chairs I had borrowed from another friend for Colby's birthday party. She drove 25 miles to return them for me. See what about I mean about having wonderful, caring friends? Then Colby had an appointment here in town with his pediatrician. Poor bubba had to have 2 immunizations, one in each arm. Boo. Then I wanted to go see my dad. Got home around 8pm and started packing us up for the next couple of days. Colby had a PT evaluation at Cincinnati Childrens last Tuesday. It was his only appointment for the day. I got the brilliant idea that we (Colby, nurse and I) would stay up there overnight, and we would take Colby to the Newport Aquarium on Wednesday. So I printed out my “Colby out of town list” and started packing, organizing, repacking, reorganizing. Took the front seat out of the van so we could take the portable Hoyer lift with us. Bungeed down that sucker. We left home in time but somehow managed to be 11 minutes late for Colby's appointment. I HATE being late for appointments, especially Cincy ones. I was not a happy camper. Once we got to the hotel things didn't get much better. Unloading, moving furniture around in the hotel room, trying to find everything I packed, which trust me, is sooooo much stuff. The nurse and I were exhausted by the end of the night. Then back up at 6:30 to get Colby ready and everything packed and reloaded to head to the aquarium. And Colby didn't even like it! He had a high heart rate most of the time and kept shutting his eyes, especially when I'd say oooh Colby look at that. Maybe he was tired from his shots. Maybe he's just not that into aquariums. I feel like all that extra work, and money, was really for nothing. But now I know, take the aquarium off the fun things for Colby to do list. The experience was quite un-fun actually.

Wednesday we got home at 3:10 and I had to be at work at 4:00. We had to unpack the equipment and supplies Colby needed for the rest of the night. I was slinging cords, CoughAssists, vents, IPV machine, trying to get out the door to work on time. Needless to say, that didn't happen. Got there a little late, but I stayed late and finished out my time. I was one tired tater by the time I got home.

First thing we did Thursday morning was give Colby his bath! He usually gets a bath on Tuesdays and Fridays. Yes, I only bathe my kid twice a week. Don't judge. He does, however, get washed up every day. You know, all the important parts. Well, that didn't happen since we were out of town, so the first order of business, after giving meds and respiratory treatment, was to wash that stinky boy. He had PT/OT at the Kids Center later that day. We had to cut his therapy a few minutes early. I needed to drop off Colby and the nurse so I could make my dentist appointment at 2:45. I had already rescheduled the appt twice when my dad was so sick. So I was determined to go and get it done. I loathe going to the dentist. Anyone who knows me knows I freak out even having my teeth x-rayed and cleaned. I have a tooth that has resorption issues. I thought you just wait. This will be the day they tell me I can't wait any longer and the tooth has to come out. But, I caught a break there, thank goodness. They told me as long as the tooth wasn't bothering me, we'll let it go until it does. Fine with me. Last thing I have time or money for right now is dental work.

Friday Colby had the last of his summer camps at the Kids Center. There were 4 camps, and he was able to attend 3 of them. I didn't know how it would go with our schedules, the heat, etc so 3 out of 4 isn't bad. The last one's theme was carnival, and there were all kinds of fun activities the kids were doing. Colby got to smash a shaving cream pie in someone's face and also dunk someone in the dunking booth. He had lots of assistance to achieve those tasks, of course, but still, that's fun stuff! We got home and let Colby take it easy the rest of the day. Then that night we took him to his first concert! I local band, which I happen to love, was playing a free outdoor concert. The weather was beautiful so I thought hey, we'll give it a try. If Colby hates it, we pack him up and come home. He loved it! Absolutely loved it! He never got fussy once. Heart rate stayed nice and low. He watched the band, the people dancing. Who knew?! Note to self - no to aquariums, yes to concerts for Colby.

I was never so glad to see a lazy weekend in my life after that week. Colby had pet therapy this past Saturday at noon. But other than that, nothing else scheduled that we had to do. This week is already better. Today the only thing we had scheduled was Hosparus came out to check on Colby, as they do every few weeks. I was able to run some errands and get the rest of the luau decorations down. That's right, Colby's birthday party was 9 days ago, and I just now got all the decorations put away. Again, don't judge. I took care of the important stuff right after the party. Put the leftover pulled pork and cake in the freezer, and put the extra beer in the fridge. Priorities, you know. Another friend was nice enough to help me get everything packed up today. She returned the decorations I borrowed from the Moose Lodge, so that's saves me an errand to run. Ah, such wonderful friends. Don't know what I did to deserve such caring people in my life!

Ok, I've rattled on long enough. Time to clean up the mess where I fried zucchini and start getting ready for bed. Looking forward to zero scheduled appointments tomorrow!

I'M SUPER TIRED, BUT SUPER THANKFUL

I wanted to thank my family and friends for always being there for Colby and me. And I mean ALWAYS. This has been an odd year for me. I've had the lowest of lows and the highest of highs. And one constant has been the unwavering love, support and care from those closest to us. Please know I see it and feel it. Please know I appreciate it so much. Please know I don't take it for granted. Seems like I'm always needing help in various ways. I swear there are days I don't know whether to scratch my watch or wind my butt. Lately my dad has been ill, and I've learned the hard way you can't be two places at once. When I'm with Dad, I feel like I should be with Colby. Then vice versa, of course. There have been times my Dad has been really sick, sort of sick, not too sick, doing great, doing not so great, sick again. Those of you dealing with aging parents know exactly what I'm talking about. I always thought when one of my parents starting showing signs of illness and aging, I'd be able to handle it. After all, look at all I've been through with Colby, right? Plus having a parent get sick is the more natural “circle of life” occurrence in life, right? Wrong! It has been just as hard watching my dad be sick than anything I've experienced with Colby. I've really had to depend on Colby's nurses to help with Colby. They've been great. I've had to ask friends to help out with Dad when there are times I just can't be there. Everyone has stepped up and been a huge help. Thank you, THANK YOU so much.

This past weekend Colby turned 16. I can hardly believe it. We had a huge party for Colby, complete with 52 guests, a beautiful 3-tier cake, a great luau theme, excellent food, and a fire spinner. That's right, there was a young lady in our driveways spinning fire batons and hoops. Colby's party was one of the highlights of 2018 for me. I wanted to do something really special to celebrate his 16^th. Again, I needed help, and my family and friends were more than willing to help. People helped decorate, bring food, address invitations, run errands, clean up afterward. Whatever needed to be done for the party got done. I loved every second of it. I loved celebrating Colby's big birthday! Having a house full of love and laughter is when I'm at my happiest, for sure.

I just wanted to take a moment to thank everyone who has helped us over the last few months. Thank you for checking on my dad when I can't. Thank you for helping with Colby's party. Thank you for understanding if I didn't return a call or text, or if when you talk to me it seems like I wasn't listening. Honestly, I probably wasn't half the time. I've just had a lot of worries and to-do lists running around in my brain like squirrels on crack. I'd like to say my schedule will calm down soon, but I'm afraid that's not going to happen. A lot of decisions are currently hinging on my dad's health. Colby is due for his next Spinraza injection in August, along with getting back to school. I keep telling myself everything is going to be okay. Take one day, one hour if necessary, at a time. Prioritize, do what has to be done not necessarily what I want to get done, accept that I can't be all things to all people all the time, and just keep chugging along. So, time to watch an episode of OITNB then go to bed. Tomorrow is Monday and I have the to-do lists ready to go.

CINCY VISIT SUMMARY

Our trip to Cincinnati Childrens on Thursday made for a long, exhausting day. But, Colby got all good reports and that's really what matters. It's almost scary how amazingly well he has been over the last couple of years. I know I shouldn't say that – I'll totally jinx it. And let me just say, I have the sweetest, most tolerant, adorable, bravest kid on the planet. Seriously, I do. Colby is laid back, goes with the flow, never seems to get undone about much of anything. Yesterday he was poked, talked to, talked about, driven 200 miles for no-fun dr appointments, and moved in and out of his wheelchair. He handled it all like a champ. Very proud of my sweet boy. Well, I guess I should say sweet young man, since he'll be turning 16 next month!

First order of business was to get labs for Colby. We're following him more closely now that he's getting the Spinraza injections. Since they need to test his coagulation, using his port for a blood draw is not an option. The heparin sitting in the port throws off the coagulation. So that means a peripheral stick for Colby. Sigh. The phlebotomists were fantastic. They accessed Colby on the first poke. Then started to draw the 10, yes 10, vials of blood they needed. Colby stopped bleeding after 7, so they poked him again and were able to get all the samples they needed. Next stop, on the complete other end of the hospital of course, was a DEXA scan. Colby gets Zometa infusions to help with his low bone density issues. So he gets a DEXA scan yearly to see if the Zometa is working. Getting this done was easy peasy. Check it off the list. After that was an EKG and Echo down in Cardiology. Also easy testing for Colby. Then we went up one floor to Pulmonary so they could test Colby's vent settings. They measure his vent pressures, his leak, and I don't even know what else. Basically they said we should be putting more water in Colby's trach cuff. They tell us this every---single---time---we're up there. And my answer, every single times, is that Colby is doing fine with the amount of water we currently have in the cuff. Furthermore, he doesn't like extra water in the cuff. You can tell by watching him he's uncomfortable with it. So, until Colby starts having ventilation issues, we ain't fixing what ain't broke. Then we went back down to the 4^th floor for clinic. After all this testing and running around, it was time for Colby to actually see a doctor!

In clinic, Colby saw the neurologist, pulmonologist, cardiologist, nutritionist and rehab doctor. The nice thing is we stay put in one room, and the docs come in to see us. As I said, all good reports. Not much to tell really. Colby is scheduled to get his next Spinraza, insurance pending, in August. We'll be returning to Cincinnati Childrens to get it done instead of Louisville. Don't ask. It all has to do with insurance negotiations, what the company who makes the drug will and won't approve as far as getting on their free drug program, etc. Basically a bunch of red tape BS. Pulmonary suggested maybe Colby needs a bigger size trach. Maybe. He's never been upsized in the 4 years he's had his trach. We'll address that next month at Colby's ENT visit. Colby has never had cardiac issues of any sort. The cardiologist said we can mark them off the list. Colby doesn't need to be followed by them unless specific problems arise. Yay! We're more than happy to do that. Colby's weight is fine. The nutritionist didn't make any changes to his formula recipe. And I swear in the almost 16 years we've been going to Cincinnati Childrens, I'm not sure what a rehab doctor does. She asked if we needed any new equipment, braces, etc. Nope, Colby is in good shape there. We're working with his PT/OT here in Louisville to get a new bath chair and neck brace. Arrived at the hospital at 8AM, and at 4PM they said we were free to go. We got in some Cincinnati traffic heading out of town, and also some traffic getting back into town on the Watterson. Colby's nurse, Colby and I were all soooooo tired when we got home. The nurse, bless her heart, worked a 14-hour day. And as I mentioned, Colby was so good all day. Never complained or acted grumpy one time. Unlike me haha. Colby's next appointment at Cincinnati is July 10^th for ENT and Endocrinology. This will be an “easy” day for us. Anyone who knows Colby knows getting him somewhere isn't exactly the easiest task ever. But having only 2 appointments that day will be a breeze compared to what we went through Thursday. It's all perspective, right?

Thank you to everyone who wished us safe travels and good luck on Thursday. We did it! Another Neurology clinic over, done and we survived. Time to start working on something much more fun, like Colby's upcoming birthday! He'll be 16 – how in the world did this happen? Slow down, time. Please just slow down a little.

IT'S ALL GOOD

I said I was going to do better at blogging. Obviously I lied. But I do have exciting news to report. The good news – the best news ever – is that Colby has received his 5^th Spinraza injection. He was due for it on March 15. There were issues with Colby's insurance. It changed on February 1^st to United Healthcare (UHC) - the suckiest insurance on the planet. Colby was denied Spinraza twice. Then the company that makes the drug offered to put Colby in their free drug program, meaning Biogen would give Colby the drug at no charge for a year. That's over $300,00 worth of medication being given to Cincinnati Children's! But apparently Cincy hasn't decided whether or not they will accept Biogen's free drug program. Ok, I totally don't understand that. It wasn't just Colby who was getting the screw job on this issue. There were 3-4 patients who were also affected by this UHC denial mess. I was very disappointed in Cincinnati's inflexibility, along with them seemingly making no hurried attempt to work on this issue for the patients who needed a quick resolution. So, there we were. A company was willing to give Colby the one and only drug that would help his SMA, yet Cincinnati Children's wouldn't accept it for whatever reason. Talk about frustrated.

Then enters the family liaison representative from Biogen. She is A-MA-ZING. She works with SMA families and is a crucial link between Biogen and the patients who need this drug actually getting it. She was able to help me switch gears and think outside the box. Long story short, Colby received his Spinraza injection here in Louisville at Norton Children's. I was amazed at how quickly we were all able to pull this together. Colby had an appointment with the Louisville neurologist. Then he needed a CT scan and x-rays. While we were there we met the radiologist who would be performing the injection. Then we got it scheduled and bing, bang, boom, Colby got his Sprinraza this past Thursday. Incredible. I'm so, so, so thankful Colby was able to get his Spinraza within a reasonable amount of time from when it was due. The next injection is due in August, so we can put this worry on the back burner for now.

So I need to clarify something. There was another local man with the same name as my dad. He and my dad lived maybe 6-10 miles apart. Apparently this other man had a wild side and ended up in jail a couple times. When my dad was still teaching, one Monday morning he had to explain to the principal of his building that he was NOT arrested that previous weekend. It was the other guy with the same name! Well, this gentleman passed away a couple of weeks ago. I assure you it was NOT my dad! My dad is very much alive. I've received a couple of condolence calls. Again, it's NOT my dad. Yes, my dad has had some health issues lately, along with a couple of hospital stays. And while I appreciate people reaching out to give their sympathies, again, it's NOT my dad. Nothing like some total confusion thrown into the mix of my already stressy life!

I'll end with this cute Colby story. As we know, most of the time he doesn't use his eyegaze to communicate. Watch YouTube, change the TV channels, sure, but proper eyegaze communication has never been Colby's strong suit. His eyegaze was set up Friday, the day after his Spinraza procedure. His nurse asked him how he was feeling. He went right to his feelings page and said, “brave.” Damn skippy you're brave, Colby Michael. He's the bravest, strongest, most stubborn, wonderful human I know! Sounds like he has some sense of how proud I am of him. Warmed my heart when he said that.

BRONCH AND BS

Took Colby to Cincinnati Childrens today for his annual broncoscopy. Grandpa Kenny was kind enough to volunteer to take us. I had to turn off Colby's feedings at 3:15am. Started him on Pedialyte and apple juice and turned that off at 7:15. My goal was to hit the road between 7:30-7:45, and we pulled out of the drive at 7:40. Nice. We didn't have to be there until 10:15, but I didn't know how traffic would be, so I felt the need to leave a little early. Everything went easy peasy. Colby was very anxious (loud and jabbering) when we first got there. He eventually calmed down. Actually he was awesome the whole time. He's such a trooper! His procedure was done right on time. The pulmonologist said Colby's trach, stoma and lungs all looked “pristine.” That's what we like to hear! Colby had to spend hardly any time in the PACU. By the time we got back to see him, he was already awake and alert. The ride home sucked! The roads were horrible. Colby's head flew out of his head piece several times because we hit so many huge bumps, pot holes, whatever it was. So yeah, I'll be following up on that new head piece for Colby's wheelchair tomorrow. Glad this appointment is done and off the to-do list.

Colby's next Cincy appointment is on March 15^th for his 5^th dose of Spinraza. Ok, let's talk. As of right now, it's tentative that he will actually get the procedure. And I am one pissed, stressed, worried mama at this point. Colby's health insurance changed February 1 from Humana to United Healthcare. Humana had approved all of Colby's loading Spinraza doses without too much trouble. United Healthcare, however, not so much. They are saying that Cincinnati Childrens must order Spinraza from their vendor, Accredo. The Cincinnati Childrens higher-ups are saying no, you can't tell us where to buy our drugs. So there you have it. When I first heard this news last week, I flipped my lid. Actually it's more like I shut down. Shoved and tucked all that worry and emotion waaaaaay down deep. But now I'm wearing my big girl panties and am ready to take on this next challenge. I talked to the drug rep for Biogen, the company that makes Spinraza. She helps families navigate insurance, Medicaid and Biogen to get the drug approved for SMA patients. Now that she is aware of what the United Healthcare issue is, she's on it. Just knowing that someone out there can help me get this drug and the procedure approved for Colby is a huge relief. She absolutely talked me down off the ledge yesterday. She didn't promise me it would all be approved by March 15^th. But she said Cincy and United HC are negotiating to get this issue resolved. She heard maybe by April 1. She told me this is well within the amount of time Colby can receive his next Sprinraza dose. So I'm trying to stay calm. I'll follow up with her later in the week to see how things are going.

Yesterday I worked and Colby went to school, and that's been our week so far. I'm keeping Colby home from school tomorrow. Give him time to get all the anesthesia out of his system. Currently I'm on the couch watching “This Is Us” and the nurse is getting Colby ready for bed. The rabbit and cat are hilarious this time of night. The cat will jump up on the couch with me. The rabbit will jump up on the other side. This freaks the cat out, so she'll jump down. Which freaks out the rabbit, who then jumps down also. I'm just glad they're getting along. Charlotte is still leery of Colby. I think she needs some time to get used to his machines and tubing. But I pick her up and take her to Colby every day so they can get better acquainted. Hoping one day I'll go in Colby's room and see the two of them all snuggly in his bed.

Time to wrap this up, tuck in Colby, feed the fur babies and go to bed. More blogging soon.

SERIOUSLY, THANKS FOR CARING

Looks like it's been a week since I've blogged. Honestly, I thought it was 3 or 4 days. Shows you how well I keep track of time. So what is best? Give a quick update to what we've been doing every day for a week? Just write about the last couple of days? Or forget updating everyone on what we're doing and blog about whatever pops up in this brain of mine. I guess there isn't a right or wrong answer. I do enjoy doing this blog. And I think there are some people out there who actually enjoy reading it – go figure! Mostly my mom and best friends, haha, but that's ok. I know there are people out there who like to know what Colby and I are up to, making sure we're surviving this circus that is our lives. Yes, we are both doing just fine currently. And believe me, I know that could change at a moment's notice. I try very hard to not take the good, ordinary, uneventful days for granted. It's easy to get hung up in the BS of daily life. Especially when Colby's care is so involved and I'm doing much of it solo. Yes, we have nursing help. But trust me, that can be a whole other set of circumstances and problems. And yes, I have tremendous support from my parents and friends. Without their constant support, love and confidence in me that I can actually do this single mom to a medically fragile kid gig, I would've dissolved into a huge puddle of goo long ago. It takes a village has never been more appropriate when it comes to sweet boy and me!

By the time this past Sunday rolled around, you could stick a fork in me, I was done. Tired, just darn tired. Colby's feeding pump went off around 6:30am. I got up and turned it off. Unlocked the front door. Texted the day nurse to come on in and that I was going back to bed. I don't do it often. I always think I can get this and that done while the nurse gets Colby up for the day. Not that day. Slept in until 9:30am! It was a thing of beauty. Then I did 4 loads of laundry and watched the Patriots LOSE the Super Bowl. Woot woot! And of course stayed up to watch This Is Us. Ohmygosh, if you're not watching this show, what is wrong with you? It's soooooo good. I didn't cry at all during the episode, so I guess that's confirmation that my heart has turned completely to stone. I also spent a great amount of my time following after Cupcake, picking and wiping up her little pees and poops. I don't know what is going on with this damn rabbit! She used to be so good at using her little box or chux pads. Now she's just letting it land wherever she happens to be. Driving me nuts! I bought “Rabbits for Dummies at Christmas for Colby and me to read so we would be better bunny owners. I've read about 80 pages so far, but haven't gotten to the part about litter box training. I thought we had this under control but obviously not. Time to skip ahead to that chapter. Good thing she's cute!

Yesterday Colby went to school until 12:30. Then I picked him up and we met his PT at the pool for swimming. Colby hasn't been swimming yet this year, so I know he enjoyed it. Last night he fell asleep within minutes of us tucking him in. Today after school he gets his port flushed, and Tuesdays are also bath days. Colby's regular nurse for Tuesday PM called off tonight. Luckily they were able to get one of Colby's other nurses to cover the shift tonight. Her regular Tues client is out of town, so she happens to be free tonight. I can certainly give Colby a bath by myself. I've done it many, many times. But I cannot tell a lie, it's much easier with some help. I said I was going to dedicate February to working on Colby's eye gaze. Getting some pictures on it, learning more about the technology of it and what it can and can't do, etc. Yep, it's on my to-do list. There's still plenty of February left so I'm not panicking yet.

I'm going to hop off here and get my shower before Colby gets home from school. This is the 1^st Tuesday in a long time I haven't worked that 2^nd job. I'm enjoying doing chores around the house and not being so rushed. I'll miss the extra money for sure, but like I said, I need sanity too. More blogging soon, peeps. Thanks for reading this and for taking an interest in our lives. We live “differently” from most, but that certainly doesn't mean we're not happy. Colby, Cupcake and I are snug as bugs in rugs around here. Looking forward to a more laid back week and some down time with my kiddos.