QUICK EYE GAZE STORY

Lately we've been sure that Colby uses his eye gaze more. Actually we've just put it in front of him more. That way if he wants to explore or "talk" on it, he can. So today he was watching a Spongebob DVD and it started sticking, so I stopped the DVD player and turned off the TV. Colby is perfectly capable of turning the TV off and on, along with changing the channels and turning the volume up and down. I was in the bathroom getting ready to go out for dinner (yes, I actually had plans; no, I didn't have a date, just out with my BFF Pam.) I hear Colby in there whining. Unacceptable. So I went in there and said look Colby, can the crap, stop crying. You're not helpless here, kiddo. Either turn on the TV with your eye gaze, or use it to tell us you need help, and we'll help you. After that he said, "about-Spongebob-help-help-Spongebob." My child is brilliant I tell you, a freaking genius! So I said see, that's exactly what you needed to do. Then I turned on Nickelodeon, Spongebob was on, and all was right with the world once again. Looking forward to the day when he is able to fully communicate his thoughts and needs. Go Colby, go Colby, get your eye gaze on. This is one proud mama here reporting, over and out good buddies.

MID-WEEK UPDATE OF OUR THRILLING, EXCITING LIVES (not really, just an update)

Remember how I was all excited because Colby hadn't gotten sick from me? Yep, spoke a little too soon. Saturday morning I got up early, 6:30. My "plan" was to study from 6:30 to 7:30 for my upcoming pharmacy tech certification. Bleh. Peeked in on Colby. His heart rate was 122. Double bleh. That's about ooooooh, I don't know, 50 points higher than it should be if he's sleeping. Took his temp, 101.2. Super-dee-duper-dee. Time to kick in the "Colby is sick" protocol. Who needs sleep anyways? Was able to get him on an antibiotic later that afternoon (thank you, kind, on-call pulmonologist at Cincy Children's who listened to me and realized I knew what the flip I was talking about.) Back in the day if this had happened, Colby probably would have ended up in the hospital, no kidding. But I've learned to catch it early. That, along with his trach, have kept major hospitalizations at bay. Actually he's even been able to go to school this week, too, so we definitely caught it early.   

In other good Colby news, I got the results from his most recent DEXA scan.  We have improvement! The spine DEXA was -3.0, which is much improvement from last year's at

-4.1. (Normal ranges for a DEXA scan are +2 to -2 BTW.) The total body was also decreased from 

-3.6 to -2.6. So obviously the infusions are working. He's due for his next round in January or February. I'm really going to push Cincy to let us do them at home. Colby has had 3 rounds of infusions, and has had no adverse side effects. No way am I driving 2 hours away in the winter to a germy hospital just so Colby can get infusions. Hope they agree to do it, or it will have to wait until spring.  

Colby's school year continues to go very well. What a stud! They use his eye gaze considerably more 

in class compared to last year, and we (the nurses and I) also put it in front of him more here at home. He is doing a lot of exploring on eye gaze, discovering new words. We've been working on vocabulary builder, a program on the eye gaze that teaches him how to construct full thoughts/sentences. So he has a page devoted to body parts. That way he could say, "my head hurts" etc. Remember how I jokingly said we were in big trouble when he finds the word penis? Well guess what? He found it. In class the other day. His nurse sends me a text saying, "Colby just said 'penis, penis, burn' on his eye gaze." Really, Colby, really? You couldn't wait until you were home on the couch to say that? And you all wonder why I drink?! Actually I took this serious because he is on an antibiotic, which could have brought on a UTI. But once he did get home from school, he didn't say it anymore. Nothing else seems to be wrong. His urine isn't a funny color or doesn't have a strong odor. So for now I'm going to stick with he just found the word and wanted to say penis. Hey, he's 11, what do you expect?

Spent over 1.5 hours on the phone with Apria, Cigna and CareCentrix working to get the IPV issue cleared up. Apria says call Cigna. Cigna says call CareCentrix. CareCentrix says call Apria. Finally I reached someone with some sense and we (Apria claims rep, customer service from Cigna, and myself) had a conference call and worked it all out. Or at least I was told it's resolved and to just ignore the $1,519 invoice I received. That's right, little darlings. It's not my problem you all can't get your shit together, but please allow me to spend my precious time getting the issue worked out. My pleasure. You're welcome. Have a nice day. And oh yeah, screw you.

That wraps up my blog/update for now. I have some errands to run before Colby gets home from school. Gotta make hay while the sun shines you know. Bye for now.

COLBY DID BETTER THIS WEEK THAN I DID, IS THAT A SURPRISE?

He did it! He did it! He did it! Colby made it through his 1st week of school, and we're not in Cincinnati Children's Hospital! Yippee. I went to school with the nurse and Colby the first 2 days, then let them fly solo on Thursday. Everything is great, so far. I like his teacher, so far. Colby seems to like his teacher, so far. Colby's nurse has done a wonderful job transitioning from taking care of him at home to riding the bus and going to school with him. After looking at his schedule for this year, and taking his physical stability into account, I want to change the times Colby attends school. Last year he went Mon-Thurs. The bus picked him up at 9:15, and he got home from school about 1:45. I want to extend his school week to Mon-Fri. Also want to see if Colby can hang in there and stay at school until 2:00 daily. All we can do is try. If it's too much on him, we'll cut back again. Of course I need a letter before any of this can happen. You can't wipe Colby's butt at school without having a letter and a meeting first. I called his pediatrician twice last week, but haven't heard back from them. This is odd; usually the pediatrician's nurse is Johnny on the spot. So I guess on Monday I'll call the pulmonologist instead, and see if they will write the letter. Colby looked so stinking handsome and grown up going to school. I was bursting with pride. He has his new fancy-schmancy blue glasses, and we gave him a faux hawk haircut last week. Still can't believe that stinker is in 6th grade. Just hoping and praying this school year goes better than last. It's certainly off to a good start! More of the same next week, please and thank you.  

Colby kicked ass this week. Me, eh, not so much. I've managed to come down with a head cold/sinus gunk. Feeling better now, but a couple days ago I was miserable. Crawled into bed at 9:30, clothes and all. Also this week have had a run-in with Apria. Wow, that's a shocker, huh? They tried to call and tell me that Colby's IPV machine wasn't approved by insurance, and that our options were #1-Apria needed my credit card number, and they would charge $1519.16 per month for the IPV rental, or #2-They would need to come and pick up the machine. Can you believe that stupid shit? Keep in mind we've had Colby's IPV machine for a year now, since August 2012. Holy hog balls, I went ballistic. I've put up with a lot of crap from Apria. I mean A LOT. They are the biggest screw-ups I've ever had the displeasure of dealing with. But now, it's personal. You don't call and threaten to take ANYTHING away from my son, especially a piece of life-saving equipment that he has been using now for a whole year! Just blogging about it makes me furious. So believe you me, I've been on the phone and writing letters to the wonderful, fabulous asshats at Apria and Cigna trying to get this straightened out. And they will here from me, every day, until this issue is resolved. I'm in full Mama Bear mode, and trust me, somebody from Apria and Cigna WILL get this mess fixed, ASAP.

Colby's solar system wall mural is in. Now I just have to find some help getting it up on the wall. Because if I do it, it goes up with Scotch tape. Not a wallpaper hanging expert, never claimed to be. His U of L decals are in, too. May work on getting those up on the wall this weekend. Also working with the speech therapist to try and get Colby to use his eye gaze more. I would love to see him turn the corner with it, and use it more as a communication tool than a toy. It's going to take a lot of extra work on my part, I do believe. But hey, what else am I doing around here, right? There are also a couple of Colby's nurses who would be glad to help.

Okay, that sums up our week. The nurse is getting ready to head out. I'll read Colby a few pages of The Hobbit. Then I'm taking my NyQuil and it's nighty-night time. More blogging soon. Have a great weekend everyone.

LOOK OUT 6TH GRADE, HERE COMES COLBYRUSS BIGBOYPANTS

We took it easy over the weekend. I worked this past Saturday. Then the day nurse got off at 5PM and we didn't have a night nurse. Time alone with Colby, aaaaaah I love it. Well, let me specify. I love alone/no-nurse time with Colby when it is known/planned, not when some dumbass nurse calls off at the last minute. That just infuriates me. Sunday morning Colby's dad came for his weekly 3-hour visit. I ran errands. Then when the night nurse came, we got Colby outside so he could help us transplant some the sunflower, lily and gardenia plants Colby and the nurse had planted several weeks ago. That was the highlight of our Saturday night. Ain't no shame in that.

Yesterday we went to the walking bridge. I had been wanting to take Colby all summer, so since it was the day before school started, it was now or never. Thank goodness there is a breeze going across that bridge because it was hotter than crap yesterday. We even went early, home by noon. Damn Ohio Valley humidity, it's horrible. Took Colby and the nurse home, then I ran some errands. Apparently they don't make plain black dress shorts for boys anymore? I can find tons of gym shorts, but I'm looking for something a little dressier. I've been to 6 different stores with no luck. The night nurse and I gave Colby a bath in preparation for the first day of school, which was today!

I had worked myself into an absolute frenzy about the start of school. I mean seriously, I have made myself sick. ALL I want is for Colby to have a good 1st week of school. That's it, all I want. And by "good" I mean I want him to stay out of the hospital! Remember when last school year started, and they called me and said, ummm yeah, Colby has some strange bleeding from his mouth. We ended up taking him to Cincinnati Children's that night, and a 6-day hospital stay resulted. That was ridiculous. The year before that, the first few days of school he caught a virus, got sick, and ended up in Cincy for 39 days! That was extremely ridiculous. So yeah, I hope you can understand my elevated nervousness for him as school starts. I've done some heavy praying the last few days. I know God has way bigger prayers to answer than this, but I was praying/begging, please, please let Colby have a good 1st week of school. Just let us get Tues, Wed, and Thurs under our belt without any major complications, please, please. Day 1 was a great success! The bus showed up on time. We loaded up Colby and the nurse on the bus, I followed in the van to school. I stayed the whole day. Just wanted to meet his new teacher, see his daily schedule, make sure the nurse was comfortable with the whole bus/school thing, etc. The only little snafu we had was the lift on the bus got a little whacked when they came to pick him up at school this afternoon. This also happened last year, so I wasn't panicking. Took an extra 10-15 minutes to solve the problem, then we were heading home. So day 1 of 6th grade for Colby was a huge success. More of the same tomorrow. I want to hang out just a little more in case the nurse or teacher has any questions/problems. Then after that, I think everything will be fine for Colby and the nurse to go to school without me.

Colby is back there in his room. I can hear him being whiney. My guess is he's tired. I asked him that, Colby are you tired yes or no. Of course he looked at no. Then I said Colby, do you want to go to bed earlier tonight, yes or no. Of course he said no. Well, tough crap, kiddo. You're getting lights out at 9:00 tonight instead of 9:30. Because let me tell you, 6:50AM rolls around pretty darn early on school days. Hope I can blog in a couple days and add smiley faces, LOLs and exclamation points for all the right reasons. That's all for now. "And that's the way it is," peeps.  

 

 

MIDDLE OF AUGUST?? I THINK MY BRAIN IS STILL IN JUNE AND/OR JULY

So here we are, 4 days before school starts. I know for a lot of people you're like WTH, we've been back to school for days/weeks. Colby's school district is getting a very late start compared to others locally. But I'll admit it, I'm not ready. He's ready in the sense that he has new school clothes. We cut his hair this week, faux hawk, ah yeah baby. Cleaned out his backpack, making sure we have the proper supplies, etc. Colby will have a new nurse going to school with him this year. She's the same day nurse we've had for a few weeks now. She'll do great. Those sorts of things are lined up. I'm not ready meaning I personally am not ready to send him off to school. I want him to stay home with me for just a little longer. Just give me one more week with him at home before he enters the big 6th grade. Guess it doesn't work that way, huh? Back to school time, whether I like it or not. I will miss my sweet boy when he's not around.

We've done a couple fun things over the last week or two. Yesterday we went to the Vietnam War Traveling Memorial Wall. I didn't know if Colby would like it or not, but he hung in there. I'm glad we took him. Last weekend we took him to the planetarium on U of L's campus. He really enjoyed it. They had this 45-minute cartoon show explaining all the planets. Colby liked it and actually paid attention. Did you know Earth is considered a "rocky midget" planet? Who knew? Also took Colby to the zoo one day. We got him up very early and hit the zoo before the stinking heat and humidity set in. We were home and resting on the couch by 12:30. The orangutans and penguins were our favorites for the day.

Took Colby for his 6th grade checkup and immunization appointment. Let me repeat, Colby is going into the 6th freakin' grade. Every time I think about it, I just shake my head in disbelief. Truly unbelievable. We knew they would want to measure him, so the nurse and I did it before we left. Colby is 56 inches long. Yes, you read correctly, 56 inches. That's 4'8". Holy growth spurt Batman! And you don't even want to know how much weight he has put on in the last few months. He's quite the bubba boy. So we had his nutritionist come over and tweak his formula recipe a bit. We're cutting back 70 calories a day on Colby. We don't want him to lose weight necessarily, but certainly don't want him gaining any more either. I need to join him in the calorie cutting, just sayin', haha.

Had to let another nurse go. Either I fired him, or he quit, not sure. But regardless, another one bites the dust. I absolutely hate going to Colby and saying, hey Buddy, I'm sorry, but such-and-such won't be here anymore to help take care of you. I assure Colby every time that it's NOT his fault, and there's nothing he's done wrong. So the nursing agency is in search of yet someone else for us. Someone dependable who actually shows up for his/her shifts would be nice.

Okay, there's a quick update. I didn't realize it had been so long since I've blogged. After the yard sale, I worked on getting my elliptical into storage. Now using that space as a "parking lot" for Colby's power chair and Tumbleform chair. Next project, redecorating Colby's room. It's been on the "to do" list since we had the shelving installed last November. Hey, don't judge me, we've been busy. It'll be a bit of a hodgepodge. One wall will have U of L decals on it. Another wall SpongeBob, of course. Can't totally get away from it you know. Another wall will be covered by a big wall mural of the planets. Like I said, no specific theme here. But these are Colby's interests right now, and as long as we can put something up besides that goofy square dude who lives under the sea, it can be a little scattered as far as I'm concerned. I'll keep you updated on the room's progress as it comes along. Later, dudes.   

ONLY 39 HOURS AND COUNTING DOWN FOR THE WORLD'S BEST YARD SALE (not really, but we're going to try)

I doubt if I'll have time to update over the weekend. Got the big yard sale going on you know. So I'll go ahead and do a little blogging while I have some time.

Monday Colby's day nurse and I took him to the movies. We saw Despicable Me 2. I think Colby liked it. He didn't cry or fuss at all, but man, he was loud. Very LOUD during the whole movie. He seemed happy enough, guess he just needed to make some noise. Luckily there were only about a dozen other people in the theater.

Tuesday my dad came over to work on the ramp outside the apartment. We have a ramp, then Dad covered it with wide plywood boards and painted them with non-skid paint. Those boards have lasted about 3 years I think, but they were starting to look worn and nasty. Okay, well let me back up. This was Dad's 2nd attempt to fix the ramp. First time he couldn't get all the screws out. They were either stripped or just not budging. So this time he brought some sort of saw and cut the boards, then pulled out the screws, etc. He comes inside and says the one thing he didn't want to happen happened. The underneath boards at the end of the ramp were looking bad/rotted. So first we had to replace those 8 boards. Major bummer. Then he comes in a little later and says the 2nd thing he didn't want to happen happened. His drill was running low on charge. Okay, so he was going to be able to work just a little while longer. Then he comes in and says the 3rd thing he didn't want to happen happened. I'm cracking up at this point, God love him. He says, "I pulled a Spongebob." I asked what in the world he meant by that. Then he says, "I ripped my pants!" Sure enough, he had a split in the back of his britches. Anyone who follows Spongebob knows there is an entire episode where Spongebob is on the beach and repeatedly rips his pants to get people to think he's funny. You know you've watched too much Spongebob when you can somehow tie in an episode and/or quote to your everyday life! I laughed so hard at him, couldn't help it. Guess you had to be there, but it was hysterical.

The nurse and I have been practicing using the Hoyer lift to transfer Colby. Okay, we only used it once, but hey, we DID in fact use it. That thing is a major pain in the fanny. Especially when you have deep carpet and rugs like we do. The last couple of days we've been like, screw it, it's 10x faster and easier to lift and transfer him.

Today we took Colby to his pediatrician here in town for his 6th grade physical and immunization update. I was worried it would be a disaster. His regular pediatrician is down in his back, so other doctors have been seeing his patients over the last couple of weeks. I assumed they would be backed up and way behind. I also assumed the doctor seeing him would be a total doo-doo head when it came to Colby and his diagnosis. I'm glad to admit I was wrong about both. Somehow we managed to get there 15 minutes early. They took us straight back to an exam room, and the doctor was super nice to Colby. Actually, everyone was super nice to us. Couldn't have asked for a better experience. Colby had to get 2 shots, which he was not happy about at all! He cried quite a little bit. Oh my, can't stand to see my sweet boy cry. But once we got him home in his comfy bed and yep, you guessed it, put on some Spongebob, he's doing just fine now.

I think I can say we are officially ready for our big yard sale on Saturday. My mom and stepdad's garage is almost filled to the brim with all kind of junk, I mean treasures, for people to come purchase. I think I still have a few items to price. But the signs are made. We have the change drawer made up. Went and got tables last night for setup. Only thing we need now is NO RAIN. Pleeeeeeease, rain gods, give us a break on Saturday. You can pour, storm and rain like crazy all you want, AFTER about 4PM. Colby and I are going over tomorrow night and also staying Saturday night. No way will I feel like packing him up and coming home after dealing with a yard sale all day.

That wraps it up for now. Will let you know how the yard sale goes when I have time. Once again, I am begging, pleading, praying for no rain! I had to make a lot of arrangements and have worked very hard to have this stinkin' thing. It better happen or else I may just have a small meltdown. Or a large one. I think I'm about due.