OUR FAVORITE WORD

This week has been UNEVENTFUL, and in the SMA world, that's as good as it gets. Colby has had a great week. No major choking issues, no equipment problems, no calling places and getting put on hold or disconnected. Heck, we even got his supplies delivered on time and his backup bi-PAP is being shipped as we speak. Plus we now have his ECO communication device, loaded with eye gaze technology. This allows Colby to look at a screen of responses, choices, etc. and make a choice simply by focusing on it with his eyes. No special switches, no scanning, just his darting little eyeballs. He's in Colby heaven at the moment, over there on the couch sucking on a potato chip and watching a brand new Spongebob episode. He's probably thinking it doesn't get much better than this!

I've stayed busy this week with a couple of things, although one of them is not typing a lot of reports. Dangit why is it so slow right now? This is my weekend to work so maybe there will be more to type over the weekend. Worked at the hospital Wednesday. I was totally frustrated by the end of the day because I somehow managed to mess up one of the machines we use. Didn't break it per se, but it was unusable until Amy came in and fixed it the next day. I used to do that stupid crap every time I worked. I would practically be in tears from messing up the machines. Then over the last year or so things got much better, but not this week. I worked on that damn thing for 20-25 minutes. I'm sure Amy had it fixed in 2 minutes. I call that machine the "Beast" and obviously with good reason!

Also been working on wrapping up the Avon fundraiser. But guess what? WE'RE STILL TAKING ORDERS UNTIL SUNDAY, JULY 17. You know you need to stock up on the Skin So Soft, right? I'm very pleased with the sales we've had so far. I appreciate everyone's support and contribution to the cause. Now if we can just find a house and apply all these funds to some handicap renovations, that would make me oh-so very happy.

Plans for Colby's birthday party are in full swing. Always a huge celebration for our families and friends. Can't believe that kid of mine is going to be 9 years old in a week. Where does the time go? Then I'll blink my eyes and the school year will be starting and Mr. Big Time will be in 4th grade. Doesn't seem possible, but time stands still for no one I suppose.

I have family and friends who are going through rough times right now. Worried about jobs, worried about family, worried about kids, worried about illnesses, various other worries. I hate to see the people I love suffer in any way. I really hate it that for the most part, I'm not able to help too much. Let's face it, my time and energy is pretty much spent handling what's going on around here. But I'm ALWAYS available with an open ear and an open heart if they need to scream, cuss, cry, vent, etc. I hope they know that.

Well, Spongebob is over and Colby's potato chip is soggy, so that's my cue to switch gears and stop blogging. See you around like a donut. Bye for now.

MOSTLY BACK TO NORMAL...WAIT, WHAT'S NORMAL?

Hold up! I can't believe it's July 10th already. Crap, where did July 1 - 9 go? And as far as that goes, where did June go? I need to get my butt in gear and start planning a birthday party for my mostest specialest Colby kid around. He'll be 9 years old on July 22. Seriously, can you believe that?! The water works have already started for me. Tears of joy and amazement of course.

This past week had some interesting moments. Tuesday for sure. Colby's nurse called in sick. She couldn't come watch Colby because she had a migraine. Okay, I get that, I've had migraines before and they're awful. Then his bath aide was a no show later that day. She called 2 hours later and apologized. She said she took a nap and just slept right through Colby's appt. I had to chuckle. I told her I appreciated her honesty instead of making up some BS story about an emergency, car trouble, etc. She comes over twice a week and she did make the 2nd time. We tried to cut Colby's hair (see pic). We really don't have a clue what we're doing, but it usually looks okay. Heck, if we screw up it'll grow out in a couple weeks. No big deal, he's cute no matter what.

Transcribing has been extremely slow lately, which is not good. No typey, no money as I always say. Hopefully it'll pick back up soon. Mama has dr. bills to pay dangit! I worked 2 extra days at the hosp this week since my "boss" was on vacation. So that'll help the wallet some.

Saturday was a busy day. My brother and his family were here for a visit and to attend the fundraiser. Came here first for lunch so of course I was up until 12:30 a.m. cleaning the night before. There's no room in this apartment to store anything. I end up using the van as a closet haha. Hey, whatever works. Then we had our Avon fundraiser at Pam's house. Note to self: summer is a very difficult time to have a fundraiser. Many people had plans or were on vacation so we didn't have much of a turnout. But the Avon orders are rolling in and I'm thrilled with the response so far. I think we're going to try to have a yard sale in October and that will be the last fundraiser of the year. Then it'll be time to win the lottery because fundraising, even though I have wonderful friends to help, is hard work to organize. Oh, by the way, we're still taking orders until July 17. Avon has some pretty darn cool stuff. You should check out a brochure, don't you think, wink wink.

I officially am not getting the house I made an offer on a couple weeks ago. There was way too much damage to the foundation and the sellers were not willing to fix it. So I opted to get out, which totally broke my heart. Before you tell me it was for the best, or it just wasn't meant to be, or I'll find another house I like better, please don't. I've already heard it like 20 times and it hasn't helped. I know I'll move on eventually, but for right now I just want to be sad and mad I didn't get this house. Right now, in my heart it's still "the house" for Colby and me. So I need a little more time, then I'll be ready to forget it and move on to bigger and better.

We get Colby's communication device this week, all fancied up with his eye gaze technology, ready to go. His speech therapist has had it for the last few days to program stuff onto it. She's coming over Thursday so we can get Colby using it. That'll prove interesting for sure! Can't wait to see what she has set up for Colby and to see how he does with it. Been a long time since he's used eye gaze. I'm sure he'll do great of course.

Okay, I'm getting tired so I'll wrap this up for now. Had dinner at Buckhead's after Mass tonight. Even though we ate 3 hours ago, I'm still stuffed. But that's what happens when you have 2 glasses of wine, rolls, an appetizer and an entree. Gonna start that diet tomorrow, it's Monday you know. Nitey nite all.

IT'S BEEN ONE OF "THOSE" WEEKS

Time to update. Where to start? I'll start with the good stuff, Colby. He's doing great, fantastically awesome! Can't say he's had the most fun summer, but God love him, he's hanging in there. He's remained healthy and that's the main thing. We've been trying to get him outside to practice driving, but you have to get him out there darn early. He seems to overheat easier than ever. He gets that honest, huh? Waiting to get the communication device, with the new eye gaze system loaded on it, back from PRC. Imagine that, waiting for a piece of Colby's equipment. He's getting ready to turn 9 in less than a month. Unbelievable isn't it? So incredibly amazed and proud of that boy. Hard to even find the words.

Here's been my week so far:

Monday, sucky day. Had an appt with my ENT. Pathology report shows I do have papillary carcinoma, in other words, thyroid cancer. Oh goodie. So now what? He thinks the surgery I've already had "should" be all the treatment I need. However, since pathology did in fact show cancer cells, he wants to be very proactive and take out the other side of my thyroid now. Super duper. For weeks all I would say is "I have a nodule." Trying to shift my thinking to "I have cancer cells," but for the most part I'm in denial. And if you don't mind, that's exactly where I'll stay for a bit longer I think. Just going through the motions, doing what needs to be done. Now I, along with Colby and all those who have to work extra to help me take care of him while I recover, get to go through this bullshit again. Surgery is set up for the 3rd week of August, which is a week after Colby starts school. I'm not happy about the timing at all. I'm the only one who knows Colby's morning school routine. Guess it's time for someone else to learn, huh?

Tuesday, sucky day. As you know, I've been working with a realtor and trying to find a house. Colby has simply outgrown this apartment. The layout isn't what we need for his equipment and quite honestly, I'm just so over apartment living. I want us to have a cute little home of our own. So I found this house. Loved it the moment I saw it. Loved it even more when I looked through it. Made an offer, it was accepted. Exciting stuff, right? Then came the home inspection. Not exciting, more like disastrous. Turns out there are some items that the seller needs to fix before I will take it. I doubt very seriously if they will, but I'm willing to give it a try. So that's where we are right now. Waiting to get a quote on what it will cost to fix the problems, then going to see if the seller and bank will agree to the repairs (it's a short sale). If not, then I walk away. Can't stand the thought of not getting that house. Breaks my heart.

Wednesday, sucky day. Seeing a pattern here? Worked at the hospital and that went fine. Had a bit of a headache but nothing I couldn't handle. By the end of the night I had a full blown migraine. I only get 2 or 3 a year, thank goodness, because they flat out stop me in my tracks. I had to call the ex and have him put Colby to bed. All I could do is take a migraine pill, lie in bed with an ice pack on the back of my head, and cry, which really doesn't help but I couldn't help it. Took about 2 hours, but I got better. Well enough to text anyways, haha. Never too sick for that, right? Once Colby was tucked in, I went to bed too.

Then today, after 10 hours of oh-so-needed sleep, I had a freakin' great day! Today is the best I've felt since surgery. No headache, no dizziness, no fatigue, no just feeling "off." I even exercised for the 1st time in over 3 weeks. Maybe I just needed to have a good cry and get it all out of my system. Maybe it's just time for me to start feeling better. Can't explain it, but I'm not going to question it. Very thankful for a day where I felt like the old peppy, goofy Amy I've always been. Hoping tomorrow brings more of the same.

Don't forget about the upcoming Avon fundraiser, July 9. Proceeds go into our "make a house Colby accessible" fund for when (not if, but when) we find the right house and need to build items such as a wheelchair ramp, roll-in shower, etc. Details on Facebook and I'm e-mailing invites/fliers tomorrow.


Nighty-nite all. Hope your week has been less dramatic than mine. But things are looking up for me and everything is going to be okie dokie. Right?

HURRY UP AND WAIT

Check out my scar, I think it looks darn good. Once the rest of the swelling goes down, it'll hardly be noticeable.

So what's new around here? First of all, we're loving this cooler weather. I picked Colby up today for the 1st time in 10 days! Mom helped me get him into his wheelchair and we took him outside to practice driving. He's made a lot of progress, although much more practice is needed. It warms my heart just to see him out there, driving, jabbering, turning. He's been a total sweetheart over the last couple of weeks. He's very patient with everyone who took care of him while I couldn't. He's growing up! I love it and hate it all at the same time.

Back to both jobs. Typed my normal schedule and worked at the hospital this week.

Finally, FINALLY I think Colby's backup bi-PAP has been approved. I just loved it when Apria said insurance wouldn't cover a backup. I said sure they will, just about every SMA family I know has a backup, just order the dang thing! Then Humana needed this, then needed that. Blah, blah, same old crap. So I contacted Colby's pulmonologist at Cincy Children's to get the proper documentation and I think we should be getting it soon. Considering his old backup is being held together with packing tape and the handle has rotted completely off, it can't come soon enough. Always exciting in SMA land to get a new piece of equipment approved.

Two thumbs up for the homemade summer sausage my stepdad made. It's darn good! Had that and cheese and crackers for supper. Okay, and beer, too. So Kenny, if you're reading this, I'll be more than happy to take some more of it off your hands.

Don't you just hate it when you're trying to get something done, but you have to wait for someone or something else to happen? Or sometimes it seems time just creeps along, especially when you're waiting for answers, or this needs to happen on someone else's end before you can move forward on your end, etc. Seems like when anyone calls needing something from me, they need it ASAP, but it certainly changes if I'm calling them needing something. WAITING to get my pathology reports. WAITING to move forward on getting a house. WAITING for my prince charming to come along or to win the lottery (I think I have equal chances at those last 2, slim and none). Come on already, let's move on with it.

Have a great weekend everybody.

DADDY'S DAY

I guess Father's Day for me is bittersweet. Sweet because I'm very lucky to have both a great dad and stepdad in my life. It's no secret I've always been, and always will be, a Daddy's girl. I was totally the apple of my dad's eye until Colby came along. He holds that title now, haha, but that's okay, I'm a close second. Dad has helped so much over the years, especially by taking us to all of Colby's appointments. Of course we get there 20 minutes later than everyone else, but I need the help and am thankful Dad wants to do it. Those trips to Cincinnati are often long, exhausting days. Sometimes I feel guilty asking Dad to do it, but he says he wants to be there and insists on it, thank goodness. Kenny has been a wonderful stepdad in that he is supportive and loving. He's a good laid back contrast for my OCD, wound waaaaay too tight mama. Plus he's a great cook and any man who can cook is a winner in my book! Hopefully in the next few days we can get together and go to Homemade Pie Kitchen.


The bitter part of Father's Day is Colby and raising him by myself. In my opinion, Colby deserves something a little different than the way things turned out. How very badly I wish things could be different. But if I wish in one hand and crap in the other, we all know which will fill up faster. So that's all the time and energy I'll spend on that topic.


Dad came over and watched Colby so I could go to Mass tonight. It was Fr. Bill's last day. He is retiring after being at the Cathedral for 14 years. I was so saddened when I heard he was leaving. He's the only priest to be at the Cathedral since I started going there. He baptized me, he baptized Colby. You can say what you want about the Catholic church, I don't care. Heck, there have been days when I have questioned the Church and what it means to be Catholic. But Fr. Bill is everything good and right in the Church. He's a quiet but strong religious leader who has made a positive difference in my life. I sure will miss him. I just hope they haven't picked some nerdy goofball priest to take his place. This dude has big shoes to fill for sure. He better come out swinging next Sunday for his first homily, that's all I can say.

Yep, lots of changes going on around here lately. Can't say I care for it all that much.

DOING NOTHING IS HARD WORK

I know many of you thought I wouldn't follow dr's orders, but I'll have you know I've been a good little patient. Actually I don't have a lot of restrictions. The main one is NO LIFTING for 10 to 14 days. Okay, now that's driving me crazy. So much of Colby's care requires lifting of some sort. But I'm letting others step in and help. I do appreciate all the help, but I'm not going to lie, I just think I do a better job of taking care of Colby than anyone else. He's hanging in there, being the sweet, lovable boy that he always is. He does seem a little confused, though, as to why I'm here all the time but either Cindy, Colleen, Rosa or Grandma is taking care of him. Got some beautiful get well flowers from Dad & Sam and Tony & Anne. Very sweet :-)

This having down time stuff has been really hard on me. You have to understand, just a few days ago I was up at 7:15 to get Colby ready for school. Then as soon as the bus pulled off I was either typing or working at the hospital. Plus I was exercising 3 to 4 days a week, which took up quite a bit of time. At the moment I'm doing NONE of that so that leaves waaaay too much time on my hands. Never thought I'd see the day where I actually wanted to work or exercise haha. Today I started to get back to typing a little. Told my boss since I was feeling okay I could work this weekend if needed. Typed just a few lines today, enough to get back in the groove.

Got Colby's school papers filled out for this coming school year, all 12 pages. Called Apria to check on the status of Colby's backup bi-PAP and surprise, surprise, no one returned my call. A-holes. Yeah, like I won't just turn around and call again on Monday morning. Watched "The King's Speech" last night. Loved it! Might just have to watch it again tonight. They finally opened the pool here at the apartments. Too bad I can't get in it right now! Should be able to after Tuesday when I get my stitches out. Okay kids, that's all for now. Cheerio and toodle-doo until later.

SO FAR SO GOOD

My surgery went just fine. Got started a little later than I expected, which drove me nuts. I was so lucky to have 5 people with me at the hospital. What a fantastic group of family and friends I have! Overall I'm feeling okay today. Didn't get nauseous from the anesthesia. My throat is uncomfortable today, but not in a lot pain. Although it hurts like a sonofagun if I cough. I'm thirsty as heck too. The plan from here is go to the dr in a week to have stitches removed and talk about the pathology report.

I want to thank everyone for all the prayers, encouragement and good thoughts. It means a lot to me. Bye for now.