SHAKE YOUR HEAD, SHAKE IT OFF, AND MOVE ON

Never, and I mean NEVER, a dull moment around here. Wait til you hear how our day has gone.

Remember how I said there were 5 things that needed attention around the apartment? Well I called the leasing office yesterday and reported them. Maintenance came over the same day and replaced the light fixture in the kitchen. Super. Looks great, very modern, gives off lots of light. Love it. This morning the dishwasher was running, very loudly I might add, then it literally died. Just pbbbt, stopped, leaving 2 inches of nasty water in the bottom. Called the office as soon as they opened and told them the dishwasher issue needed to be moved to the top of the priority list. After another phone call in the afternoon, they finally sent someone at 5:00 to look at it. He said yep, the motor is dead. I felt like saying yeah, no shit brainiac, but I didn't. He's coming tomorrow to shop-vac the nasty water out of the old one. The office said a new one should be in within 3 days or so. Lovely way to start the day.

Oh but wait, it gets better. I usually work on Wednesdays, but today I traded so I could be off tomorrow to go on Colby's field trip to the pumpkin patch. My phone rings around 1:45, it's Colby's nurse. Hey Amy, did you put the house key in Colby's backpack this morning? A wave of panic comes over me. No, sure didn't, did you by any chance? No she says. So they were locked out of the apartment. Wonderful. I said no problem. Go to the leasing office and they will let you in. Five minutes later my phone rings again. Big  sign on the office door that they were off the property at a meeting and wouldn't be back until 3:00. I said I'm on my way. We are swamped at work right now, and I hated that I had to leave an hour early. But I hated the fact that my kid was outside stranded more, so I took off out of there like a bullet. Now there is an extra key on the inside pocket of Colby's backpack, and now my dad has a key since he's the one who usually helps the nurse get Colby out of his wheelchair if I'm not home. I'm just thankful it wasn't raining, or freezing cold, or 95 degrees outside.

Another bummer is that Colby didn't get to go swimming today. I had to work. I tried to reschedule it for Friday, but the facility said it couldn't accommodate for us that day. So we'll wait until next Tuesday I guess.

We finally, somehow by the grace of God, got a trach for Colby. I have been on the phone talking to anybody that would listen trying to get this worked out. Finally the local branch called and said they had a trach for us, and they would ship it. I said absolutely not - hold onto it and I'll send someone to pick it up! I swear, I don't even trust them to do a task as simple as mailing a package. They would probably forget the apartment number or send it to the wrong patient, something brilliant like that. Colby's dad went and picked it up, so we're ready for Colby's trach change this Thursday.

So you all know what a persimmon is, right? Actually I'm surprised at the people I've met lately that don't know what it is. Dang city folk. It's a small, brownish/orange fruit that grows on a tree. When they fall to the ground, they're ripe. You pick them up, then pulp them to make bread, pudding, etc. I made a persimmon pudding last night and took it into work. I got lots of compliments on it, which made me happy. I love when I cook something and people enjoy it. Kind of wishing I had brought a piece home with me about right now.   

Colby's dad and stepmom came over tonight and we carved Colby's jack-o-lantern. Before they got here, I let Colby choose the face he wanted. We let him play around in the pumpkin guts, then he drew the face on his pumpkin. He loves that jack-o-lantern. We have it lit back there in his room. Who us? A fire hazard? Nah. I also have a strand of ghost lights and his Spongebob pumpkin hooked up to a switch so he can turn it off and on. He's back there in Halloween heaven right now.

No one, neither ENT or Pulmonary, has called me back from Cincy about rescheduling Colby's appointment for his ML&B and flex bronch. I find this highly annoying, since I called ENT surgery scheduling week before last and called Pulmonary surgery scheduling last week. I'm picking up an extra week's work in November, so I need to know when his appointment is NOW so I can make arrangements or reschedule for December if necessary. Guess that will be my next set of phone calls as soon as I get the chance.  

Going to bed as early as I can tonight. Busy couple of days coming up with Colby's field trip tomorrow and of course Halloween on Thursday. Can't wait to post pics of Colby in his costume! And nope, I'm not giving any hints. You'll just have to wait and see. Bye for now.

 

OUR WEEK IN REVIEW

The nurse will be here at 9AM today, so I'm enjoying a few quiet moments by myself.  Sort of quiet. The dishwasher is running, and that poor thing is on its last leg. Need to go tell the apartment office that it needs fixed/replaced, along with a few other things. Tell you what. Let's take bets. I'll go over Monday morning and tell them what needs done here, and we'll see how long it takes them to actually do it. Here's the to-do list: finish painting in the living room where they hung the new blinds, toilet handle sticks all the time, new faucet and lighting fixture in the kitchen, and now the dishwasher. My guess is 2 months, at least. In other words, they're slow around, and I find it very annoying. Colby is still asleep. I'm enjoying my morning coffee, watching Sportscenter and pecking away on the computer with my black and orange fingernails. Yes, I think it's official, I'm a Halloween freak.  

Monday was an interesting day. While Colby was at school I went and visited with the ex in-laws (the 1st set, haha. ) Hadn't seen them in probably 18 years or so. Had the most wonderful visit. So glad I went. Picked Colby and the nurse up after school so we could take Colby to get his flu shot. That kid is one tough dude, let me tell you. Took him to Kroger because I thought it would be easier/quicker than going to the pediatrician's office. Think again, there were several people in front of us getting their shot, too. Seemed to take forever. Colby did awesome. Didn't cry or whine one bit.  

Kudos to the principal at Colby's school for helping arrange swimming therapy for Colby. They have a pool at his school, but it's not ideal for Colby. It would be difficult getting him in the pool. Plus I could tell the school was leery to have Colby swim there, even if I was there to get in the pool with him, since he has a trach. The principal said, hmmm, we've never had a trached kid swim here before. Yep, leave it to us, we're trailblazers! We were able to make arrangements with the same facility we went to over the summer. They have a beautiful, modern swimming facility which is a much better option for Colby. So on Tuesdays the school bus will take Colby and the nurse to this facility. I'll meet them there and we'll get Colby in the pool. The lady who runs the pool at this facility found a perfect vest for Colby to use. It supports his head and neck, but still allows him to move his arms, hips and legs. Very excited for Colby to get to go swimming.  

Wednesday Colby got in "trouble" at school. He was being a total poop head. He refused to answer his math questions. I mean flat out would not do it. So the teacher gave him 5 problems to do at home. Then he refused to do them at home. He was being beyond difficult that day! So he got no Spongebob until he got his math done. Then I went ahead and tacked on some more time, so no Spongebob until 5:30. I told him the next time I got a report like that from school, it would be 6:00 until he got to watch Spongebob. The next time after that, 6:30, etc. Not sure if he was just having a bad day Wednesday or if the Spongebob threat worked, but he was more cooperative on Thursday and Friday. Stubborn doesn't begin to explain this kid's personality, holy crap.

I would love to tell you that the situation of ordering supplies with Apria has gotten better, but unfortunately it hasn't. I've talked to customer service, the RT that is in charge of Colby's account, and now the branch manager at the local level. I've called the processing center and got the name and direct line of someone who is supposed to be helping me get Colby's trachs. It continues to be a big, fat, horrible, frustrating mess. On the 17th I ordered 8 items. As of today we have received 6 of them. We're allowed 4 CoughAssist filters monthly. They sent 4 alright…4 cases! We have 200 CoughAssist filters sitting in the living room! Freakin' idiots! If it wasn't such a total waste of money, I'd pitch them in the dumpster so I didn't have to mess with it. But I know that's not the right thing to do, so I'll work on returning them. Oh, and Colby's trachs were supposed to be delivered Friday. Of course they weren't. The lady at the processing center said to call her if we didn't receive them. I called her, left her a voice mail message. She didn't return my call. Yep, same old, same old shit there.  

Thursday I had a much-needed girls' night out. We went to the Haunted Hotel. My friend and her sister go every year, and I've gone with them the last 2 years. I kept saying, okay, I'm not going to scream this year. I've done this before, I'm ready. Well forget that. Along with jumping out from the dark shadows and corners, they're allowed to reach out and touch you now. That's just messed up. It was a terrifying blast. So glad I went. Already looking forward to going again next year.     

Okay, I'm getting a little chatty here, so I'll wrap this up for now. The nurse will be here in 15 minutes. If she's on time, of course. That's always a big IF. She'll get Colby up for the day. I'm going to go walk, then start getting ready for work. Yep, my weekend to work 2nd shift on the counter. Simply just can't wait (note the sarcasm in that statement.) Later, taters. Time to get this day started.

CREEPY CREATURE & OTHER BLOGWORTHY NEWS

Check it out! Finally got a pic of that nasty, weirdo albino squirrel. Literally chased the thing around the parking lot. First I saw it on the ramp again, up by our door. Then it was under the van. Then it scurried across over by the pool. Then by this tree and eventually up the tree. I've had a couple people tell me that albino creatures are good luck. In that case, next time I catch it on the ramp, I'm going to capture it and make it our pet! Just kidding, that thing totally weirds me out.

Colby is at it again on his eye gaze. You'll never guess what he said at school the other day: "I want girlfriend." His nurse texted me that and I said oh no he did not! She said absolutely he said it. Lord give me strength. We've been working on how to get Colby to use Facebook through eye gaze. His speech therapist came over Friday and we figured out a few things. Not an easy process to get a kid who isn't able to use a keyboard and mouse on the Internet. But we're not giving up. He sent his first Facebook message, rxrxxrx. I was so stinkin' proud of him! My little high-tech redneck! Can't wait until he can communicate for real with everyone. Tonight around 8:00 he said, "am I tired?" Actually he was acting tired. So, yes Colby, I think you were, haha.  

Colby's nurse had a sore throat this past Monday, so she went to the doctor, just as she should. The rapid test was negative, so she thought cool, no problem. She worked the whole week, 40 hours, taking Colby to school. Then her doctor calls her on Friday and says the throat culture they took came back positive for strep, and they wanted her to start antibiotics. Dammit, can we not catch a break around here? Colby seems fine so far, I think. Thank goodness he's already on an antibiotic. We just finished that today. Although all 3 of his cough treatments were rough today. Had some oxygen drops and I had to stop the IPV, give a set of coughs with the CoughAssist, hook in oxygen etc. You can never be nonchalant with SMA. NEVER, not an option. So I'll be on heightened alert with him over the next couple of days.  

Not much else going on around here. Yesterday I worked. When I got home, the nurse and I got Colby up in his chair. Grandpa came over and we all played a riveting game of Yahtzee. Grandpa won. The nurse left at 5:00, and we didn't have a night nurse. It was very nice to have my sweet boy all to myself. Reminded me of the good old pre-trach days. Just Colby and mama. Don't get me wrong; I'm thankful for the help we have. We have 5 nurses right now, and I'm pleased with all of them. But some days you just need a little space! Today the nurse and I took Colby to pick out his Halloween costume. Nope, I'm not telling what it is. You'll have to wait for the pictures.  Colby seemed to have a good time looking around at all the scary stuff hanging from the ceiling. I was like a kid in a candy store. Did I mention I really, really, really like Halloween?

Okay, look people. The Colts/Broncos game is on, so I'm wrapping this up now. Hope my Colts can hold on to their lead. We've got a pretty busy week ahead, but I'll update when I can.

JUST MINDING MY OWN BUSIN---SQUIRREL!!!!

Things are getting back to normal around here. Well, our normal, which of course is very different than a lot of people's normal. I have to remember that g-tubes, trachs and various pieces of respiratory equipment for an 11-year-old nonverbal child is not considered society's "normal." It just happens to be what we're used to, our perfectly normal lifestyle. Colby went to school both yesterday and today. He had decent days, not great, just decent. The mornings have been rough on him. Once he gets up in his wheelchair and rides the bus, which is pretty much a giant, yellow shaky vest, on top of having extra drainage from his head cold, the secretions are a bit much for him. He's having great afternoons, though, while at school. So I hate to keep him home if it's a matter of just coughing/clearing extra secretions. For the most part he's back to usual jabbering, cute-as-a-freaking-button self. I don't know. It's the never-ending parent dilemma, figuring out what is best for our kiddos. Doesn't it wear you out sometimes?!

I've been able to catch up on a few things around here. I worked over the weekend, so nothing much got done then except for the usual taking care of Colby stuff. I still need to go through the mountain of mail that has accumulated over the last couple of weeks. Of course that's the task I've saved/procrastinated, and now it's on my last nerve. Maybe if I have some time tonight I'll start on it. After the Biggest Loser premiere goes off, of course. Not missing that for anything! Love that show, have never missed an episode. Got out a few Halloween decorations today. More to go up as the week progresses. Only 15 days until Halloween, yippee Skippy! The one day of the year when it's okay to dress up and act like something/somebody you really aren't. Who doesn't love that? Time to carve pumpkins, make applely, cinnamony, pumpkiny, yummy treats, watch scary shows. Oh, and the weather is going to get cooler in the next day or so. Good stuff, love it, really I do! We have to get on the ball so Mr. Colby can pick out his costume. He's already said he wants to be something scary, not funny. I guess the days of being a duck, Elvis or a cowboy are over for him. I think he would make the best vampire ever. Last year I couldn't talk him into it, he was zeroed in on being a zombie. But let's face it, he did make the cutest/scariest, best damn zombie ever.

I was sitting here today at the computer doing something very important. Okay, not really, I was Facebooking probably. When out of the corner of my eye, it caught my attention. Had to do a double take. There is an albino squirrel that hangs around the apartment complex, and it was right outside on the wheelchair ramp. I've been dying to get a picture of that weird thing. And there is was, right there, and I missed it! Couldn't get to my camera fast enough. So there I was, tiptoeing around outside in my sock feet with my camera, looking for the white squirrel. He was long gone, though. I'll get him one day, don't you worry, the creepy little yard rat.

Going to wrap this up for now. I made stuffed peppers for supper. They smell pretty darn tasty, so I better go check them out. Girl gotta eat! Bye for now.

CAMPING TRIPS ROCK - HEAD COLDS BITE

Camping was great. Or at least I think it was. I mean, it was, but it had some moments. Mainly I had some moments. I was sick the entire time we were gone. Woke up Friday feeling yucky, and stayed yucky, and am still yucky a week later. Colby started getting sick Monday. Head colds, both of us. Yeah, I'm over this shit for real. Colby was supposed to have school Wed, Thur and Fri this week. I kept him home Wed, then sent him Thur. This was a mistake. His numbers were crappy while he was gone, and he even cried at school a little. He kept telling his teacher on his eye gaze, "I'm going to tell you how I feel. I am really sick." Then he was picking various body parts, saying they were bleeding or they ached. God love him. Kept him home today. Finally got a doctor to agree to an antibiotic, so we started that today. We've done IPV and CoughAssist treatments around the clock, every 4 to 6 hours, since Monday. He had hit and miss symptoms. He had a mild fever that came and went. One day his oxygen would be low. One day his heart rate would be high. One day his trach secretions would be thin, one day they were thick and yellow. Get the picture? It's been a mess. I've been hacking my head off, practically ODing on plop-plop-fizz-fizz Alka-Seltzer and cough drops, tired from getting up with Colby through the night. Worried about Colby. He has been sick, but a different kind of sick. Usually Colby is either perfectly fine, or sick in the hospital with pneumonia. There is no in-between with this kid, usually. So him being "just" sick with SMA and a cold has thrown me off a bit. But we survived the week somehow, and now I think we're both turning the corner and starting to feel better.

Back to camping. Overall it was fantastic. I loved the opportunity to get Colby out of the apartment for a few days and visit with the family. We had one day of sunny hot weather. A couple of days of rainy weather. One day of cold weather. Just as the saying goes: don't like the weather in southern Indiana? Just stick around, it'll change in 10 minutes. We went for a nice walk. Colby loves to just lie around and watch the campfire. I swear he is totally mesmerized by it. We were able to get in a cookout/picnic between the rain on Saturday with Mom, Kenny, their friends who were camping 2 spots down from us, and my stepbrother and his family. This is really what I wanted to do while camping, so I'm glad we got it in. Colby sat up in his chair and used his eye gaze to communicate with everyone. We did the hot dog/s'mores gig around the fire. We tried to sit around the fire and visit some more, but the rain set in again. We were trying to hurry and get Colby under cover, but his wheelchair got stuck in the wet ground and/or wet leaves. The tires were literally spinning, while I was "giving it gas" and the others were pushing him out. Nice, really nice. It was worth it, though. I loved every second of it. Sunday we stayed in the camper because the weather was for crap. Made Colby watch the Colts game with me. Then he watched Spongebob and I watched more football. We needed to be home Monday at 3:00ish because the wheelchair dude was coming to make some adjustments to Colby's chair. We got up and made a fire so my little pyromaniac could watch the flames. I had a couple s'mores for the road, then we headed home. By the end of the night, Colby's nose was pouring snot and his illness started.

So I think that about catches you up for now. In spite of me feeling like crap on a cracker and the weather not being all that cooperative, the camping trip was still fabulous. I don't know how many more camping trips we'll be able to have in the RV  L Colby is getting too dang big, and so hard for us to get him in and out of the motor home. We'll have to see what next Fall break brings us, I suppose. If there's any way to do it, we'll figure it out. We always do. Going to bed soon, then getting up at midnight for Colby's cough treatment. Have to get this kid well, ASAP. Too much school to be attended and Halloween festivities to do in the next couple of weeks. Now that I'm feeling better, I'll update a little more. I know you've all missed us terribly haha.

 

 

 

BITS OF PIECES OF OUR CRAZY LIVES LATELY

I'm going to make this short and sweet, because I'm tired and want to go to bed. I'm good. Colby is good. Bye.

Just kidding. I have a little more to report than that. I've been busy as crap lately. I said if I could just make it through September I'd be okay. And I did! With training for my new job, picking up a few extra hours at my old job, and working my first official weekend as the new "pharmacy counter technician" I've been a little cra-cra cuckoo. I worked 6 days in a row and took care of all things Colby, so yeah, pretty much running myself ragged. But now my schedule is back to normal, or a new normal I should say.

Colby is doing fabulous. He's had a great week at school. Today they went on a field trip to the zoo. Tomorrow is his last day of school for the week, then he's on Fall break until next Wednesday. I'm hoping now that my schedule has lightened up a little, I can get back to redecorating his room. That just got put on the back burner with everything else I had going on. I also want to get busy putting other/new stuff on his eye gaze. He's using the heck out of it, and I couldn't be more pleased. Time to kick it up a notch. And now for the really good Colby news…drum roll please…he drove his power chair FORWARD this week. Once in gym class, then again up and down the hall at school. Now that's news! It's wonderful that others are finally having expectations for him. That's what he needs, someone else to push him besides his mama.

We're going to spend Fall break camping with Mom and Kenny, and I can't wait. You know what I'm going to do while we're there. Nothing, as little as possible, relax. Visit. Spend QT with my sweet boy. Go for walks. Read The Hobbit to him. Make s'mores. Take naps. Visit some more. I'm not forwarding my home phone to my cell. I'm not taking my daytimer.  I'm not taking the mail to sort. Besides Colby's daily routine, we have no set schedule. I need a few days of R and R. And football. I want to watch lots and lots of football. Colby's nurse helped me get a bunch of stuff together tonight. It's all sitting here in front of the TV, waiting to get packed up tomorrow. It'll take me all day while Colby is at school to get us packed up and ready. Then he'll get home from school. We'll feed him, do a routine trach change. Do his IPV and CoughAssist treatment, and hit the road. Aaaaah, let the mini-vaca begin.

That's about it I guess. I know it's not much detail, but I'm tired and want/need to get in bed. I'll be blogging again soon to report how the camping adventure went. Good night, all. Remember to count your blessings.