SMA AWARENESS 2016 - Day 2

When I woke up today, I challenged myself to find something positive about SMA. Yeah right huh?! Nothing like struggling with an impossible task the whole day. Honestly, I have nothing good to say about SMA itself. If you know anything about our lives, you know how hard it is dealing with this diagnosis. Well, maybe I don't have anything positive to say about SMA right now, but here are some things I've learned and developed over the years raising an SMA Type I child.

Patience – You may not believe this, but I have developed a tremendous amount of patience. I've had no choice but to at times inhale, exhale, repeat and deal with things as they come along. Patience in dealing with getting the supplies and equipment he needs. Patience in dealing with people who don't know anything about SMA, yet assume it's okay to tell me what to do with Colby. Patience with goofball nurses. Patience with getting Colby ready to get somewhere. Patience with Colby when I know he's smart as can be, yet he chooses not to be independent. And even patience with myself. I try to be the absolute supermom who can do all and fix all for Colby at all times. And there are days that just can't happen. After all this time, I've finally become more and more patient with many people and circumstances. That's a good thing, right?

Support – Colby and I have a tremendously large and freaking fabulous support system. Honestly I don't think either of us would've survived this long without it. As the saying goes, everyone is your friend when times are good. Then you find out who your real friends are when the shit hits the fan. I'm overwhelmed with how loving and generous certain people have been to us. It means everything to me to know that if I'm having a rough time, I can pick up the phone and call any number of people who will listen to me talk, cry, vent, problem solve and do anything I ask of them. No questions asked. And the SMA community is awesome. I'm proud to be a warrior mama with so many strong, loving, helpful SMA moms. We support each other, give advice about what has or hasn't worked for our kiddos, share supplies, etc. No one should have to go through an SMA diagnosis alone, and I know how lucky Colby and I are to have such a wonderful group of people supporting us through this journey.

Gratefulness – I have bad days just like everybody else. Some days are really bad. So bad I truly think I'm losing it and wonder if I can continue to do what I have done the last 14 or so years. But I'm no fool. I am extremely thankful for every single moment and day I have with Colby. Even if I have trouble with insurance, supplies, nurses and who knows what else, at the end of day I know how lucky I am to still have my sweet boy. I don't ever forget that. EVER. Colby is a sweet, funny, beautiful soul. He has brought me so much joy and pride. When I watch him sleep, listen to his jabbers, or see him just doing his normal Colby stuff, I treasure it all. Because unfortunately way too many SMA families have had to say goodbye to their beautiful children way too early. I don't know how I would ever recover from losing Colby. So for now, I'll be thankful for the time I do have with him, along with feeling blessed that he's doing as well as he is. Sure don't miss those awful, long, stressful hospital stays.

I will also give a shout out to the numerous doctors, specialists, therapists and teachers who have helped us along the way. SMA is tricky. It seems to affect each child the same, yet so differently, if that makes any sense. The learning curve with SMA Type I is pretty damn short. You receive your child's diagnosis then boom, you better hit the ground running as they say. You're thrown into the big bad world of terminology, appointments, medical facilities and so much information coming at you. Some of it correct, some of it incorrect I might add. We've had a lot of help from a lot of different people along the way. Colby has had some excellent professionals helping him (and me) over they years. And we love you all and all you've done for Colby.

So there, that's about the best I can do. Because honestly, SMA sucks. It's horrible and I absolutely hate it. But I know Colby and I aren't in this fight alone, and that means so much to me. I know I've grown as a person and have become strong, resilient and educated in how to best care for my child. And those are the positives I cling to when it gets rough. Next blog maybe I'll share all the negatives about SMA. That will be so much easier haha.

SMA AWARENESS 2016 - Day 1

August is SMA Awareness Month. I will attempt to blog each day this month to tell you a little something-something about SMA, particularly how it relates to my sweet boy Colby, along with how our lives have changed since receiving his diagnosis in November 2002. Many of our family and friends know all too well the in's and out's of SMA, so much of the stuff I blog about will probably be blah blah blah to them. But maybe, just maybe, a newly diagnosed family will come across this blog and maybe, just maybe, I can provide some insight into the wild and wooley SMA world.

Today my blog is very straightforward. It concerns a possible treatment for SMA. This is exciting news, as currently there is no cure or treatment for those with Spinal Muscular Atrophy, no matter what classification (type) of SMA someone has. So basically there's this drug called nusinersen. This drug is in phase 3 of testing with SMA Type I patients. Type I is the most severe form of SMA, which happens to be the type of SMA Colby has. According to an article released by curesma.org, “the analysis found that infants receiving nusinersen experienced a statistically significant improvement in the achievement of motor milestones compared to those who did not receive treatment.” And if I'm understanding correctly, nusinersen will soon be ready for FDA approval. This would be the first drug on the market for the treatment of SMA! And of course FDA approval takes months, if not years, to come to fruition. But hey, this is the most hope for an SMA treatment or cure I've heard of in 13.5 years! So for today, let's just be thankful a cure or treatment for this horrible condition is at least being investigated and on the horizon! Never give up hope!

What does this mean specifically for Colby? I have no idea. To the best of my knowledge there are no drug or therapy trials for older SMA Type I patients. Will he ever be considered as a candidate for a medication trial? I have no idea. Honestly, I didn't think a treatment or cure for SMA would ever come around in Colby's lifetime. But then again, if being completely honest, I never thought Colby would make it to 14 years old! So what do I know? I just know I pray daily for a cure so SMA will disappear completely and families won't have to deal with the overwhelming struggles so many other families have had, including our own. Go nusinersen, go!!!

BIRTHDAY GOOD - EVERYTHING ELSE, booooooo

And here's the rest of the story! Didn't want to be all wha-wha, gloom and doom in yesterday's blog. Wanted to focus on Colby, his birthday and the amazing young man he is becoming. Oh, and he IS amazing. I went in to check on him this morning. He was still sleeping, so I just stopped and looked at him for a couple of minutes. So sweet, so strong, my absolute everything. I'm truly blessed for each and every day I have with him, whether they're good or bad days.

So let's talk about some not-so-good things that are going on around here. I've been sick with a head cold/sinus infection for almost a week, and it has totally kicked my butt! I felt better Tues, then felt so-so Wed and Thurs, and Fri felt like crap on a cracker. Blah! Stupid, stubborn me kept thinking, I'll start feeling better anytime now. Well, I didn't. Yesterday I finally broke down and got some real drugs. Thank God for friends who are nurse practitioners! Thank you TO! Now I'm on an antibiotic and steroid pack. Already feeling some better. I love drugs, haha!

Friday was not a good day for me. It was Colby's birthday and I tried to stay really positive and focus on that. But sometimes everyday life comes along and gives you a thunder punch right in your throat. Originally Colby's bday party (keeping it simple this year, just cake and ice cream) was supposed to be today. So my sweet mama was over helping me get some housework done. I really struggled. I was sweating, wheezing, hacking my head off, miserable. I kept asking Mom and Nurse David, aren't you all hot? Aren't you burning up? They kept saying it was because I didn't feel well, and they were probably right. Mom left around 1:30. I kept watching the thermostat. Throughout the day it slowly started creeping up again. I got brave and felt the vents – no cold air coming out. So, three strikes and you're out. Our AC is officially done/broke/stick a fork in it/getting a new AC unit this week. Ugggggh! I had bought a portable AC to have as an emergency backup. It sat in the living room forever. Dad helped me take it upstairs just last week. So Nurse David, God love him, helped me drag it back downstairs and helped me get it running. Then my friend Mary brought over a window unit. So we're quite comfy around here really. And someone came out last night and charged the old unit one more time. We'll make it until the new unit is installed. Yep, home ownership woes. Just going to bite the bullet and do it. Have to. Kid, and this mama too, NEEDS air conditioning.

Then the nurse noticed Colby's pressurized air mattress wasn't working. Oh just fantastic. We took it off Colby's bed. We've looked for a tear, checked the hoses, etc. Can't find the problem. I have no idea if insurance will approve another one. So that's on my list of crap to get accomplished next week also. Actually we've had several weird phone calls lately. Apparently Colby's primary insurance is up to some shenanigans, and believe me, I'm NOT in the mood to deal with these a-holes. I get a call a couple weeks ago from Colby's DME that insurance is not longer approving Colby's backup vent. Uh, excuse me, WTH is that about?! Anyone who knows any single thing about trachs and vents knows you must have a backup at all times. What am I supposed to do if God forbid his vent goes out and we didn't have a backup? They are being complete jerkoff, moronic idiots. So I've been on the phone with the DME and Colby's pulmonologist trying to get that resolved. Then on Friday I get a call from Colby's pediatrician's office. They received “urgent” paperwork from Colby's feeding supplies company asking all these questions about his formula, current height and weight, just a bunch of BS questions they should already have the answer. And Colby's pediatrician doesn't even handle his feeding issues. That's his nutritionist here locally and in Cincy. Oh good Lord. She gave me the name and number of the dimwit who sent her the “urgent” paperwork, so I'll be calling her this week also. After that I just went into shutdown mode. AC broke. Pressure mattress broke. Equipment and supplies issues. And I felt like doo-doo. I was done. Just done. There was no way I was having Colby's bday party in a house without sufficient AC. Plus who wants a cupcake after I hacked all over it?! So I made phone calls and sent out text to postpone/reschedule Colby's party. Sorry kiddo, mama just couldn't make it happen this weekend.

We have a busy week coming up. Taking kid up to Cincy Children's tomorrow for a DEXA scan and sleep study. When we are discharged early Tues morning, Grandpa and I are taking Colby to the Newport Aquarium for his birthday. Wed Colby has a well check visit at the local pediatrician and I have to work. My list of phone calls seems to be growing by the minute. I'm just thankful I'm starting to feel better. I almost canceled Colby's sleep study. I thought there is no way I can do this when I feel the way I do. But I think I'll be ok. My meds have another day to do their magic and let's face it, I'm just a badass anyways. I will survive. I always do.

I'll blog again soon and hopefully I'll have something accomplished with these issues we're having with Colby's supplies and equipment. It NEVER ends. Dealing with idiots never, NEVER ends. Welcome to my world.

HAPPY BIRTHDAY C.M.R. - You are the bestest!!

So let's talk about how fabulous my kid is. Yesterday was his 14^th birthday! Ok, well, what's the big deal about turning 14 you may ask? For Colby, it's a huge, fabulous, over-the-top big deal. You see, when Colby was diagnosed with Spinal Muscular Atrophy (SMA) Type I when he was 4 months old, we were told he would probably die when he was between 18-24 months old. That is a horrific statistic to hear about your sweet baby boy. I was determined from the day we received his diagnosis that I would give Colby a fighting chance at a decent life. And not to pat myself on the back or anything, I've done a damn good job. With an enormous amount of help from other SMA families, specialists at Cincinnati Children's, therapists here locally, the most supportive family and friends ever, and a whole lot of determination on Colby's part, too, of course. I'm very proud of Colby. He's a fighter. He has made it through surgeries and illnesses that most of us will never have to worry about enduring. And through it all, he has kept a sweet, funny, stubborn personality that makes me laugh and cry at the same time sometimes. I know I gripe a lot about nursing, not getting the supplies we need for Colby, and other day-to-day frustrations that come along with his care. But I wouldn't trade it, no freaking way. I treasure every moment I have with him, even when he's being a typical eye-rolling, extremely stubborn teenager. I love him so much. I hope to have another 14+ years with him.

We're celebrating his birthday in a couple of different ways. We didn't get to do anything yesterday specifically but have done some other stuff lately. He went bowling with his St X buddies a couple of weeks ago. They are so good with Colby! I'm so happy they have stayed in touch. Nurse David and I took Colby to see TMNT2 last week. Colby really liked the movie. We go to Cincy Monday night for Colby's sleep study. Super yuck! But he hasn't had one in 5 years, so he's due. Then Tuesday while we're up there Grandpa, Colby and I are going to the Newport Aquarium. And, at a date to be determined in the near future, we'll have family and friends over for cake and ice cream. It was originally scheduled for tomorrow. But due to circumstances beyond my control, I had to cancel and reschedule. More about that later. Today he has pet therapy. Every time Luna comes to visit, she makes me want to get a dog for Colby. Then I see all those funny pics on Facebook where dogs do something horrible and/or disgusting and the owner puts a sign around the dog's neck and takes a pic. That's all I need around here, a trash-eating, poop-rolling, eat-anything dog screwing up my life. So for now, we'll just visit with Luna every other Saturday until I completely lose my mind and get Colby a dog.

THANK YOU to everyone who sent a text to Colby or wished him happy birthday on Facebook. I've made sure he's read all of them. Hopefully that child understands just how much he is loved by so many people. Here are a couple of recent pics. I forgot to post the one on July 4^th - the little pyromaniac! I was worried he would be scared to have fireworks that close to him, but he was all boy and loved them. Next year we're going to Grandma and Grandpa Kenny's for fireworks. They have a bigger, safer back yard than we do. The other pic is from Thursday night, his last day of being a 13 year old. Look at that sweet face! Happy 14^th Birthday, Colby Michael. You are my amazing, strong, funny, stubborn, sweet boy and I am so very lucky to be your mama!!

Pyromania!!

Tomorrow I turn 14! Look out world!

 

JUST A QUICKIE JULY UPDATE

I feel like crap. I mean really, who gets sick in mid-July? This goofball, that's who. Achy, headache, coughing, sore throat, fatigue, blah, blah, blah. But hey, it's nothing that some DayQuil, NyQuil, ibuprofen, cough drops, Zicam, Onguard essential oil, extra sleep and extra fluids can't handle. Plus there's my sure will to get better. Ain't nobody got no time for no cold. So I WILL feel better tomorrow. I've been wearing a mask around Colby and also keeping my distance, along with washing and sanitizing my hands every 4 or so minutes. The nurse and I wiped down everything I possibly could have touched in the last couple days, so I'm hoping stays sick free. After all, he is turning FOURTEEN YEARS OLD this Friday. He ain't got no time for no sickness this week or any other week.

Took Colby to see Teenage Mutant Ninja Turtles 2 last week. I've been telling him all summer I'd take him, and we finally got around to it. I lucked out because it was at the cheapy movie theater. Also took him bowling with his St X friends last week. Colby actually beat one of the boys by 4 pins! I was on fire, bowling a career high 134. Dang, usually if I bowl 100 I'm doing the happy dance. We're doing a low-key birthday party for him. Just cake and ice cream with family and friends. My gift to him is we're going to the Indianapolis Childrens Museum over Fall Break. Just couldn't get it organized this summer, so early October will have to do.

I would love to share other great and exciting news, but we really don't have any. Need to start working on Colby's bday cake. My friend Nancy is helping me. We already know what we're doing. No, I'm not telling, it's a secret. I could go ahead (and should) make the buttercream icing ahead of time. Maybe tomorrow I'll feel like it. Sure isn't happening tonight.

It's 9:33 and I'll be going to bed shortly. Hello NyQuil and hello dark bedroom for a lovely night's rest. Like I said, I will feel better tomorrow. It's swim day and now way I'm not taking Colby. More soon.

MINI VACA ROCKED! READY TO RETURN!

Sweet boy out on the lake.

We had the best mini-vaca ever this past weekend! My BFF, Amy, Colby and I headed to Lake Barkley to visit my other BFF Kim and her hubbie Philip for a long weekend. We left as soon as Amy got off work on Thursday and we could get loaded up and on the road. Colby did really well on the 3-hour drive there and back. Basically we ate, drank, visited, took boat rides, played games, napped, went for drives and overall just had the best time! Kim, Philip and Kizmo (their morkie) have a beautiful home right on the lake. They spoiled us rotten – we never had to want for anything! Amy and Kim were great at helping me with Colby as much as they could. Philip helped out around the house a lot so Kim could visit with us. The weather was disgustingly hot, but hey, what you gonna do? We are already planning our next trip down there. Can't wait! Here are some pics of our fun-filled Barkleyfest vaca:

This was our view for the trip. Beautiful, peaceful Lake Barkley. Aaaaaah, heavenly. 

 

 

 

 

 

 

 

There was some intense Yahtzee!-ing and Trouble-ing going on between boat rides.

  

Took a drive to the Land Between the Lakes Elk and Bison Prairie. It was like we called ahead and said we were coming! Animals were out and feeding. Beautiful creatures.

Check out this beast! He was right outside the van. Just hanging out, on the side of the road, waiting for us to come along and show Colby. 

Group shot! Philip (captain), Colby (co-captain), and the 3 Amigos (me, Amy and Kimmie)

TUESDAY'S TALK

Sunday we did what I said we'd do. Got up at the buttcrack of dawn. Got me ready, got Colby ready. The nurse got here at 8am. We loaded Colby up and went and had breakfast with Dad/Grandpa at the Moose Lodge. My goal was to get there at 9:30 – we got there at 9:38. Not bad. The food was delicious as always. It's really neat what they do. On Mother's Day, the men make breakfast for the women. On Father's Day, the women make breakfast for the men. Then we delivered a couple of cards to other father-like menfolk in our lives. The rest of the day, not much. I've started watching the new season of OITNB. By myself, Colby isn't watching. He may be a teenager, but I don't think he's quite ready for “all that” just sayin'.

I'm not going to sugarcoat it, yesterday pretty much sucked. The house kept getting hotter and hotter. It was 85 miserable degrees in here. Awful. Colby's nurse looked like she was going to pass out at any minute. I was literally in tears it was so hot. I told you, I don't do heat. First phone call of the day was to the company that supposedly “fixed” the AC last week. I said, uh yeah, you didn't fix it. They came out about 2 hours later. They weren't here 5 minutes and said ok, it should work now. Seriously?! I don't know what they did. Don't care, because the air kicked on and immediately started cooling the house down. Thank goodness. But now I'm totally freaking out again. The thermostat is set for 73, but it's 75 in here. That's a big red flag to me that the air is going out again. OMG I'm so over it. I've got quotes from 3 different companies. So if I wake up in the morning and it's any hotter in here, screw it. I'm not messing with this old unit anymore. I'll just have to bit the bullet and get a new unit.

We were tucking in Colby last night. I looked up and said holy crap, where did all the water in Colby's fish tank go?! I guess a third of the water was gone from the tank. I about shit by pants. So, 10:30 at night the nurse and I are in there soaking up nasty, poopy fish water, trying not the get electrocuted. Figured out what happened, and oh yeah, I'm the biggest total freakin' dork on the planet. Nurse David helped me clean out Colby's tank this past Friday. He has 3 tanks and is really into that sort of stuff, so he was more than happy to help. Ok, actually he didn't “help” he did all the work. Then he told me, don't forget to change out the filter in a couple days. It's going to need it. Ummmmm, well, ummmmm, I forgot. The filter got clogged (what is it with clogged filters around here) and the water wasn't running through the pump properly. Hence, therefore, hitherto, water spilled out the top. I swear.

We did take Colby swimming today as promised. As usual, he loved it. Jabbered the whole way there. Started packing for our mini-vacation. We're going to have to get some extra storage for the van. Racks on top to hold a hardtop storage container, or a hitch to pull a small trailer, something. We're going to be absolutely crammed in there. But as I always say, for Sweet Boy, I shall prevail! My BFF Amy is going with us. I told her she can only take what she can pack in a shoe box. Haha. She thinks I'm kidding, wink-wink. Mentally ready to go. Physically I still have a buttload of packing and organizing to do. Oh, and laundry. Need to do some of that before we leave.

That's the update for today. I've been reprimanded recently for not blogging enough. Oh yeah, because I have so much extra time to do that! Just kidding. I totally have time. Getting ready to get kid tucked in for the night. Fingers crossed tank is full and fish are swimming, not floating! More soon.