MUCH OVERDUE UPDATE, COMING YOUR WAY RIGHT NOW

So why haven't I blogged in a really, really long time? Not sure, just haven't gotten around to it I suppose. Are you dying to hear what's new with us? Certainly you are, so I shan't keep you in suspense any longer.

The answer is, a little of something and a bit of nothing. I worked Mon-Fri this past week, which is unusual for me. Usually it's only 1 or 2 days a week. My boss, who in case you don't know is also my BFF, is on vaca. So I'm covering for her. I will love getting my paycheck next week, but I sure did miss my sweet boy when I was gone. And I'm happy to report that in 5 days I neither broke a packaging machine, nor did I leave there in tears. So take that, pre-pack room! Also working Mon and Tues of next week. Cha ching, gotta make that money-money.

Colby is enjoying his summer break, i.e. being a bit on the lazy side. We were supposed to take him to Build-A-Bear the other night, but the storms hit and we had to postpone the excursion. I do think he's a tad too old for BAB. However, they currently have Spongebob characters there, which he'll like of course. Plus we also have gift cards, so yeah, we're going sometime this summer. Swimming a couple weeks ago was a great success. Colby held in there for 30-35 minutes, then got tired. Hoping to take him again in the next couple of weeks. I need 2 helpers to go with us, 1 to make sure the suction and vent don't fall in the pool, and 1 to help me keep Colby's trach/stoma out of the water. So it takes a little coordinating, but it's totally doable and I can't wait to take him again. Colby also had pet therapy this past week. Three words - he loved it! Colby got to pet and hang out with this gianormous Lab-mix dog for about an hour. She was the sweetest dog, hence her name, Sugar. Her owner was really cool, too. We lowered Colby's bed and let Sugar get up in bed with him. Colby was whiny when they started to leave. I promised him we would ask Sugar to come back and visit. Of course we spent the next 15 minutes using a lint roller to get all the black dog hair off of Colby and his bedding. Totally worth it, though. Colby also got massage therapy yesterday, the lucky little booger. The massage therapist who sees Colby has told me several times she'll give me a massage, too. Seriously, why haven't I taken her up on that?!

We've only had Colby outside a few times in the last couple of weeks. The weather turned to hot/humid/nasty/miserable. In case you didn't know this about us, we don't do heat. Period. But in the few times we have been outside, power chair driving for Colby is a total bust. He just won't do it, AT ALL. I mean literally will sit in the parking lot for minutes at a time without activating the chair. He'll just watch the direction arrow go around and around. I guess the Great Wheelchair Crash of 2013 really shook him up? That's my only guess. It's so discouraging. We tried and tried to find the right driving system for Colby. Now we have one that works well, and he wants nothing to do with it currently. He won't drive for me, or his grandpa, or a nurse. I even tried to bribe him. I got out his Super Soaker water gun from last summer while we were outside last Sunday night and said hey Colby, if you practice driving your chair, you can play with your Super Soaker and get us wet. Zero. Crickets. Nothing. He wouldn't drive a yard, foot or even an inch. Somebody pass the vodka, please and thank you.

Friends of ours recently adopted 2 simply beautiful babies. They had a meet-and-greet open house today, and I couldn't wait to meet the little rascals. The nurse and I loaded up Colby, and drove to I-don't-know-where, some park on the other side of the city. Then it proceeded to rain, so we were scared to get Colby and all his equipment out. They brought the kiddos over to the van for a minute, so yes, the mission of meeting the kids was accomplished. Just wish Mother Nature had been a little more cooperative.

Guess that's it for now. Time for me to get up off my lazy buttocks and do an exercise DVD. I went walking the other night and I swear, about had a heat stroke before I was done. Stupid freakin' summer weather. Walked 3 miles and at about mile 2, I was like seriously, what was I thinking?! But today inside the AC will be much better. More blogging soon. Sooner than the last update, I promise.

COLBYRUSS CRASHPANTS AND DECISION MAKING

Miss a day, you miss a lot around here. Well, not always, but it has been interesting around here the last couple days.  

Colby's nurse is back there getting him up for the day. Yep, we finally got a day shift nurse to help us over the summer. Today is her 3rd day. Day 1, she just watched/shadowed me. Day 2, we slowly started letting her do more hands-on stuff with Colby. Day 3, I said I'll be in the living room, holler if you need me. Experience is the best teacher, I always say. Colby got his new glasses the other day. They are simply adorable on him. Check out pic below. The rest of day consist of speech therapy visit, and hopefully we'll take Colby swimming when his night shift nurse and my mom get here. Also trach change day. Ain't nothing but a thing now. Old trach out, new trach in, bing-bang-boom, it's done. That's how I roll.

So let me tell you what my sweet boy managed to do Tuesday. I had him outside for some power chair driving. He's been a little weird on driving lately. He'll just sit there and do nothing. And sit, and sit. Then spin to the left for a while. Stop. Drive backward for a few feet. Then sit and sit. You get the drift, not a lot of progress. So we were outside and I'm sitting there watching Colby, soaking up some sun, and I hear beeps coming from his chair. Okay, that means he's in the menu mode, where he usually plays with the elevator, leg rest, etc. Unbeknownst to me, somehow he managed to find the speed button. That beeping was him shifting from speed 1, where he normally drives, to speed 5, which is like freakin' turbo jet speed. Then he got out of the menu mode and started driving forward at warp speed. Before I could jump up and stop him, CRASH, right into the back of a Ford explorer out in the parking lot. And I do mean crash. He hit it hard. Hit it so hard as a matter of fact that he busted out the car's taillight. His head went flying forward. Holy crap on a cracker, it was awful!! I started looking him over from head to toe. I just knew I'd find a bone sticking out. But fortunately he wasn't hurt too bad. He had a little cut on his right hand that was bleeding for just a minute. His right hand is also bruised in a couple places. I know he has to be sore. Other than that, no major damage, thank God. So I took pics of the damage. Wrote a note to the owner of the Explorer and taped in on his car. Called the apartment office to let them know. Waiting to hear from the owner of the Ford, but haven't yet. So I must ask, how in the world did Colby manage to find the speed control, change the speed, exit out of that mode, then take off like a bat out of hell, when lately all he wants to do is spin in circles or sit there? I swear the incident took 7 or 8 years off my life for sure. I'm just so thankful he wasn't seriously hurt. Could have been really, really bad.

After much thinking, and praying, and some more thinking, and talking to the doctors at Cincinnati, I've decided to postpone Colby's VEPTR surgery until next spring. I just absolutely hated the idea of him missing out on the start of a new school year, transitioning from elementary to middle school, getting a new teacher, etc. The whole reason we stay in this stinky city is so Colby can attend this particular school. I talked to the ortho nurse this morning. She says to give her a call in November and we'll start looking at dates in 2014 for Colby's surgery. So, no more worrying about this crazy crap for a while. No more running up to Cincy for this test or that test. Time to kick back a little, find some fun stuff to do this summer, and enjoy being with my boy.

Okay, speech therapist is back there with Colby, I better go see what's up. More updates soon. 

  

SUMMER IS HERE - BRING IT ON

School's out! School's out! Colby's last day of elementary school was Wednesday. His nurse wasn't able to go with him on Monday, but he did get to go Tuesday and Wednesday to finish up the school year. And what a school year it has been! Remember the mouth bleeding incident on day 2 of the new school year? Then he had to miss a ton of school due to not having a one-on-one nurse. Then he was supposed to leave the school year early for surgery, but of course that didn't happen either. See, you just never know around here. We make plans, but as always, our plans don't go as planned. I'm getting rather used to it by now. My sweet boy is going to be in 6th grade next year!! Holy crap on a cracker, how is that even possible?!  

Everybody keeps asking us what we have planned for the summer. Well, that's a good question. Originally we were going to be recovering from VEPTR surgery. Now, not so much. I've been thinking of taking him on a couple short trips. Maybe to Indy, I hear the children's museum there is kickass. Maybe Gatlinburg to the aquarium there. Maybe to Build-a-Bear, as they have Spongebob characters there I think he would like. Trying to decide if he's too old for that or not. I do know we're taking him swimming again this week. Looking forward to that. Other than that, we're sorta winging it for now.

I called Cincinnati Hematology a few days ago to follow up with Colby's lab results. Seriously, you aren't going to believe this. They want to REDO the platelet aggregation study. WTF, you're kidding, this is a joke, right? Nope, she wasn't kidding. Apparently some of the vials clotted, along with his lipids were high. For the love of all that is good and holy, can't anything EVER go right for this kid? Actually we have 2 choices. #1 - redo the study, #2 - don't redo the study and they will treat Colby preventatively before surgery as if he does have a bleeding disorder. I hate both these options. Isn't there a curtain #3? I was livid by the end of this phone conversation. I said, you know, I'm tired of these foul-ups. I'm going to have to think long and hard on this one, I'll call you back next week. This whole mess makes me nauseous. Everything leading up to this surgery has been chaos. Let's move on, I can't even think about it right now.      

Mom came over a few days and helped me get Colby's winter/summer clothes switched out. Colby has grown so much over the past year. New shorts and short-sleeved shopping trip, here we come. Last night Dad, Colby and I went to the Moose for dinner. My BFF Pam came and joined us, too. I have the best parents. The absolute BEST, hands down. Where would I be without them? Up Poop Creek for sure.

Not sure what Colby and I are going to do the rest of the day. He's back there getting his IPV treatment right now. I'll admit it, I've been lazy in setting up the eye gaze lately. So we need to do that for sure. If the rain stays away, maybe take him outside for some driving, which of course involves him spinning in circles and driving in reverse. The nurse gets here at 5:00 and I'll go to work then. What a way to spend a Saturday night, alone in a tiny office, in the back of the pharmacy in the basement, packing pills. Not to mention it stays about 20 degrees back there. Oh well, I guarantee I've had worse Saturday nights, just sayin'. Have a great weekend, blog readers. 

GOT NOTHING MUCH HERE JUST OVERALL FRUSTRATION AND BLAH BLAH

Didn't realize it's been over a week since I lost blogged. I thought it was 4 or 5 days, so that goes to show you how with it I've been lately. Last Friday Mom and I took Colby to get his new glasses and frames. He's way overdue. His current frames are digging into the sides of his face. We went with the Miraflex frames. They're sort of rubbery and will be much more comfy for Colby when he's lying down. I've seen other SMA kids with them. Wondering why no one at the eye place has ever suggested them to us? They should be in sometime next week.   

We didn't have much of a Memorial Day weekend. I worked on Saturday and Monday, so wasn't much time for anything else. Colby went to school this week Tuesday through Thursday, also rode the bus. I went to school with Colby and the nurse on Tuesday to make sure she was ready to fly solo with caring for Colby. I just sat in the back on the classroom to be there if he had any issues. Listened to my iPod and sorted through some mail. No problems at all. So Wednesday they went to school without me. Yep, Colby had a choking incident. I got the call while I was pushing my cart through Kroger. So I went to school, helped get things under control. Then I brought Colby and the nurse home. Thursday went much, much better. No Colby-is-choking-you-need-to-get-here calls. Next week he'll go to school Tuesday and Wednesday (nurse can't go on Monday), then Colby will be done with school year.

So Cincy ortho nurse called last week. We have a new VEPTR surgery date. Guess when? I'll give you a hint. The month does NOT begin with a J. I'm so upset. It's August 7th. The nurse said we're at the top of the cancellation list. I know it sounds horrible, but maybe something like what happened to Colby will happen to some other kid and we could get their spot over the summer. Colby's school year starts August 20th I think. I'm sick that Colby, once again, will have to miss a bunch of school, especially at the beginning of the year. But, once again, what the hell can I do about it? Nothing. Absolutely nothing. It is what it is. Several people have said, well, August is better than September like they originally told us. Yeah, I suppose so. Oh, and even better, we'll have to repeat his basic labs, MRSA screening and EKG. These have to be done 90 days within surgery, and of course August is way off from when we had all this crap done originally in April and May. Gotta love it.

I'd love to blog something cute, funny or entertaining for you. But really, I got nothing. Getting Colby back to school is awesome - there is that. Got my carpets cleaned last week, meaning Mom and Kenny came over and did it while Colby and I were at school last Tuesday. I do love a clean carpet, and trust me, they were stinkin' filthy around here. So I'm glad that chore is done. Colby and I did absolutely nothing yesterday. We needed a day like that. I'd love to get him outside today and let him practice power chair driving, but it keeps raining off and on. He has a new thing when he drives. He used to love to go into the menu mode, then move the chair elevator up and down. Move the leg rest in and out, etc. He hasn’t been doing that much lately. Now it's spin in circles to the right and drive backwards. And when I mean spin, I mean spin, spin, spin, spin, spin. He'll drive/spin to the right for a few turns. Stop the chair. Watch the direction arrow go all the way around through reverse, left turn, menu mode, forward, then right turn, then spin and spin to the right again. Kid cracks me up. I'm very pleased he is watching the direction arrow. He totally gets he is controlling it, and is very capable of controlling it. Now if we can just get him to take some interest in driving forward! Maybe he'll take in an interest in that soon.