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.