MISCELLANEOUS MONDAY STUFF

I'm going to say one more thing about Colby losing strength and motion in his right hand, then I'm going to let it be. Okay, you know me better than that, I have more than one thing to say about everything. It was just so sudden. It was like on a Thursday he was driving perfectly fine, then by the next Tuesday he was unable to squeeze/activate the switch to drive. Usually after a long hospital stay or illness I'll see decreased strength and/or motion with Colby, but he has been as healthy as he can be for months, years really. He hasn't had a major hospital stay in almost 2 years. I'm frustrated beyond belief, but can you imagine how Colby feels? Of course he realizes he can't activate his driving switch any more. I'm struggling with that because dammit, it's not fair. It's also heartbreaking, disgusting and he doesn't deserve it. There, that's it. Time to accept this for what it is and move on.

Colby's IEP meeting is this Thursday. IEPs are not exactly my idea of a good time. I compare them to someone either burning off my eyebrows slowly with a match or having all 20 of my nails yanked out with vice grips. I'm pretty sure the pain is equal with all 3 scenarios. I've been making notes for days as I think of things. LOTS of changes for Colby this time around, including the amount of time he attends school, new academic goals, Skyping as part of his academics, etc. It'll be interesting I'm sure. Better eat my Wheaties and put some Bailey's in my coffee Thursday morning. Colby's speech therapist wants to switch Colby from using 45 icons on a page for eye gaze to 84 icons per page. I was totally against the idea at first. But I've watched Colby navigate the 84 per page, and he has amazing accuracy. Well of course he does, he's an AMAZING kid, duh. He can still find his crazy hellos and all the other stuff he liked on the 45 per page. So we're going to give this 84 per page thing a try.

We had an interesting Saturday night around here, and by interesting, I mean stupid. Colby and I were chilling on the couch watching Robin Hood: Prince of Thieves. I heard a weird noise coming from the bathroom. Side note, Colby liked the movie! Got up to see what was up. There was water dripping from the ceiling and running out of my drywall. I'm not kidding, it was coming through the wall. Wish I had gotten it on video because I know everyone thinks I'm cra-cra. Called the "emergency" maintenance number. Waited 15 minutes or so. Water still dripping, running. I called twice, and my call was not returned. Finally it stopped. I'm thinking they had some overflow issue upstairs. Thank God it stopped. Didn't have any leaking/dripping yesterday. And bless his heart, the "emergency" maintenance man called me back late last night, 24 hours after my original phone calls! Dork! I got the old "my cell phone has been acting up" story from him. So of course I was over at the apartment office this morning telling them the whole scoop. They are "sorry" for any inconvenience. Yeah, well, sorry don't sweeten my tea, pal! Now they need to get over here and fix the wallpaper and drywall before mold sets in. Love it here. Oh way, no I don't, this place sucks.     

And last but not least, I'm officially a fish murderer. We're down to one lonely fish in our tank, the black bug-eyed. Last week the gold bug-eyed bit the bullet. Poor thing, he was looking mighty sad and lethargic the last couple of days before he went to that big aquarium in the sky. He'd try to swim, get tired, rest. Get sucked over by the filter. Or he just hovered on the bottom of the tank. Since then I've changed the filter and added some drops that neutralize the water. Hoping this fish holds on for a while. I've helped my child surpass his life expectancy by 10 years, but I can't keep a damn fish afloat for 2 months. Go figure.  

That's all I've got for now. More fabulous blogging soon. Hopefully it won't include leakage or fish issues of any sort.  

TOO MANY TEARS TODAY

I know we have great things going on in our lives right now. Colby has started a wonderful new adventure at school - Skyping! I'm so excited about this I can hardly stand it. Colby's speech therapist and I have been kicking around this idea for a long time now. We finally found a school/teacher/class willing to participate. Actually it's my niece's school up in Indiana. Last week they tested it on Tuesday, and on Thursday Colby was having social studies class with another school 100 miles away! I want Colby to have exposure to a more "typical" classroom setting. Hopefully we'll be able to build on this. First, let's just get the technology working properly. Next, I want Colby to work on communicating more appropriately on eye gaze - talking with peers, asking and answering questions, etc. Then eventually we can work on getting the assignments from the other school and incorporating them into Colby's curriculum and eye gaze. We have other good stuff going on, too. We were able to spend time with family over the weekend. My brother and his family came down Sunday so we could celebrate the February birthdays. I'd like to meet the person who invented red velvet cake. First I would give them a hug because it's so incredibly yummy delicious. Then I'd slap the piss right out of him/her. It's a hard cake to make! More like a science fair project than a recipe. Buttermilk, cocoa and food coloring paste, vinegar and soda fizzing. Ridiculous. Next year I'm going to buy a bag of Oreos, throw them on the table, sing Happy Birthday, and be done with it. Who am I kidding? No I won't, I'll make another red velvet cake I'm sure. And how about this weather, huh? Mr. Sunshine has shown his beautiful face. The yucky, slushy snow is gone. Warmer weather after a freezing, long winter, that's a good thing. I've had dinner with a couple of my gal pals this week. Good food, great drinks, wonderful fun and conversation. I always look forward to a girls' night out. My diet is blown completely out of the water for the week, but oh well. I must say the Texas Roadhouse and Beef O'Bradys was well worth it.

But honestly, I'm in a crappy mood. Haven't been able to shake it the last couple of days. I think SMA is just too all-consuming at times. I'm sure it's the same with diabetes, Crohn's, cancer or any other chronic illness, but of course SMA is the one I deal with most. And it's certainly the illness that pulls on my heartstrings the most. There are a lot of really sick SMA kiddos out there right now. I don't like getting on Facebook and seeing words from SMA parents like fever, x-rays, not feeling well, heading to the hospital, collapsed lung, intubation, etc. Some of these families I'm close to, some I don't know too well. But I hate it for all these families. I know how hard they work to keep their kids healthy and how stressful and exhausting it is to have a sick SMA child. It sucks, period! I'm thinking of and praying very hard for these kiddos to get better soon. Plus we've noticed that Colby has lost significant strength and motion in his right hand and wrist lately. You know, his driving hand. He's been having trouble driving his power chair because of this, and it absolutely breaks my heart. And it pisses me off. And it frustrates me to no end. But what can I do? Not much, and I fucking hate that I can't just fix it for him! I've talked to his PT about it. All we can do is regroup and figure out another way for him to drive. How many times have we had to regroup and rethink his driving due to muscle weakness and decreased motion?! Too many to count! I know that Colby's hand weakness is far less critical or life threatening than what these other families are going through. But I'm devastated at the recent weakness in Colby's hand. I  can't help it. Nothing that anyone says is going to make me feel better about it. Not right now. I just need some time to be sad, mad, discouraged and upset. Then I'll pick myself up, put on my big girl panties, and we'll figure out a new plan. Just not tonight. Luckily for me there's a big tub of 3-flavor ice cream in the freezer. Time to pop the lid, grab a spoon, and get busy.

SHOULD HAVE HAD WHEATIES FOR BREAKFAST

Crazy day. Woke up half an hour late. Don't you hate when you do that? Then you spend the rest of your morning chasing your tail. The maintenance guy showed up to do the paint touchups I requested, of course right when the nurse and I are in the middle of getting Colby up for school. He's a sweet old man, but you know how sweet, old men are. They like to talk. And talk. And talk. Yesterday Colby's bus was 20 minutes late. Today it was 10 minutes early. Great. Of course the bus is early on a day when I'm running behind. Maintenance man had to move his paint cans out of the way so we could get Colby out the door. While driving down the hall, Colby's nurse accidentally ran his wheelchair into the wall and put a huge dinger in it. Hey, no biggie, stuff happens. She's been with us since July, so I guess she was due. Everyone who drives that chair puts a dinger in the wall at some time, like a rite of passage. No problem. Hey maintenance man, since you're here, can you fix the dinger in the wall?! I was getting ready to walk out the door to work and realized I didn't have on my ring! My Colby ring. The ex gave me that ring when we found out I was pregnant with Colby. I'm extremely sentimental about that ring. I looked. I searched. I panicked. Couldn't find it. Cried a little. Long story short, it somehow fell off and was in Colby's bed the whole time! Thank goodness. But I spent 7 hours freaked out thinking I had lost my Colby ring. Just a weird kind of day. Surprisingly enough, I'm not drinking tonight. Eating Campbell's soup and saltines. Woo-hoo. What is wrong with me? I should be booger-faced by now.

I'm busting at the seams to tell you what Colby did on eye gaze today! He was at school and first of all, he did his schoolwork and answered questions appropriately. That alone is good for him. Then the teacher told him he could do something he wanted to do since he did his work. These were Colby's next words on eye gaze, "put in Spongebob." He made a complete sentence! A for real, appropriate, totally kickass sentence! How about that? I'm so proud of him! Good job, sweet boy. Then later in the day he said another sentence on eye gaze, "Do I like popcorn?" Haha. He is making such wonderful progress.

Okay, I'm getting tired and am going to bed. Just wanted to share Colby's eye gaze story for today. And thought you might get a kick out of my crazy day, too. It's NEVER dull around here, that's for sure. Who knows what tomorrow will bring? Guess we'll find out in about 8 hours. 

TUESDAY TALK

I've got a lot brewing in this little brain of mine, so my blog will be a mish-mash of miscellaneous events that have gone on or are currently going on with us. In no particular order or priority. In other words, I'm just rambling, but dang I'm good at it.  

Colby had another snow day yesterday. They've had to adjust the school calendar and now Colby's last day of school is June 9, providing no more snow days I guess. I've been toying with the idea of not sending him back after Memorial Day. We need to keep him as healthy as possible before surgery (end of June.) But then again, if he can go to school and do okay during this frigid winter, he should be more than fine come June. Decisions, decisions.

And speaking of decisions. Colby's class had a field trip to the circus last Friday, and I decided to let him go. I didn't want him going in and out of cold too many times, so I said I would take Colby and the nurse to the circus and drop them off at the door. It was a madhouse. School buses everywhere, little kids everywhere. Got yelled at by a cop because apparently I was trying to drop Colby off at a spot that was NOT a drop off spot. Sorry, dude, nobody told me, I'm just trying to get my trach and wheelchair dependent child into the frickin-frackin circus. Calm down. As soon as I pulled away, I felt panic and regret. What had I done? It was a BAD idea sending Colby with all those other kids i.e. germs around. Then I text the nurse, asked if everything was okay. She said they had front row center seats, and Colby was loving it. He was paying attention and his eyes were huge, taking in everything. That made me feel a little better. I guess we all have those parenting moments when we're like, WTH did I just do to my kid? But Colby handled it like a champ, as always.

So if you pay any attention to this blog, you know we've had ongoing power struggles with Colby and he does/doesn't do on eye gaze. He was asked at school to spell the letters in his name. Not rocket science. Well, Colby simply refused to do it, so it then became homework. I then decided this is something he's going to work on every day. Of course it has very little to do with whether Colby knows a C from an O or an A from a Z. It's about him knowing we (teachers, nurses, therapists, grandparents and I) have expectations for him, and him doing what is asked. There have been some looooong name-spelling sessions, let me tell you. However, I'm very happy to report Colby has made tremendous progress in reaching this goal. The other day he even spelled C-O-L- in a row. Very impressive. We all know he can do it, and it's so wonderful to see him using that big brain of his and working towards doing something that is asked of him. I think that shows much maturity on his part. Perhaps it's time to move on to the next goal? Math. Dear Lord, Pope Francis and the Seven Dwarfs, pray for us because I believe Colby hates math more than he hates spelling! Everyone involved better stock up on the wine and chocolate.

We had a heck of a busy day today. Colby had school. Then swimming. Then the nurse and I gave him a haircut and a bath. Plus now somehow we're back to changing his trach on Tuesdays, so it was trach change day. Not to mention Colby's little butt was up before 5AM this morning. Why, you may ask? Heck if I know. I checked on him and he seemed to be ok, so I don't know if he had a dream, or an ache, or an itch. Not sure. Another reason eye gaze is so important to learn, so he can tell us these things!

I'm rather tired myself, especially since I was up before 5AM also. Thanks, Colby, really appreciate that. I'm just killing some time until the laundry is done. We have no clean slobber rags (washcloths) for Colby, so as soon as the load is finished, I'll pitch them in the dryer and go to bed. We can really live it up on a Tuesday night, can't we? Try not to be too jealous.

CAN'T GET ENOUGH OF THAT EYE GAZE, CAN YOU?

If you're tired of hearing Colby eye gaze stories, you might as well go ahead and unfriend me on Facebook and never read my blog again. I'm loving that Colby is using his eye gaze more, and I'm also trying to learn how to program it more. Also teaching the nurses how to get it set up for him. Our goal is to have it set up in front of him most of the time. He doesn't have to constantly use it, of course, but it should be made available to him if he wants to use it.

So what is "eye gaze" exactly? It's how Colby is learning to communicate. He is nonverbal, able to make jabbering noises, but does not have the muscle strength and control to make words. His eye gaze is an amazing machine. Like I say, it can do everything but make you a ham sandwich! It's about the size of a laptop. Part of it is like a regular computer. It runs Windows. It has wifi so he can get on the internet. He can download and listen to music. Then there's the "eye gaze" part. This allows Colby to make choices using only, yes, his eyes. He looks at the screen and when he sees the icon/word/phrase he wants to choose, he focuses his eyes on that choice. The computer will put his icon/word/phrase at the top and say it for him. There are tons of icons to choose from, or we can take and download pictures also. You can pick one of the voices on the eye gaze, or you can also record noises or words. You can link pages. Colby can even use his eye gaze to turn the TV on and off and change channels. Actually he could operate anything with a remote control using eye gaze, as long as we programmed it. He also uses it in class to count, answer multiple choice questions, etc. It's an incredible piece of technology, and I'll admit it, some days I love it and some days I hate it. But I feel that way about most things most days; eye gaze shouldn't be an exception haha.

Colby has made awesomely awesome progress with this machine over the last couple of years. Especially with the things HE wants to learn to do, haha. I'm very, tremendously proud of him. This eye gaze is what we need to tap into that brain of his, so we'll continue to work on it. He has proved time and time again he knows how to use it and navigate through the pages. For example, let's say Colby wants to turn on the TV in his room. See the pic below. This is Colby's "home page" on eye gaze. First, he would go to the ECO tools button, 6th from the left, top row. This would move him to a different page, where he would then choose the Remotes button, 2nd from the left on the top row. That would move him to another page. From there he would choose whether he wanted the bedroom or living room remote. Once on that page, he could turn the TV on, change the channels we programmed for him, move the volume up and down, etc. Colby can do this with incredible speed and accuracy. You'll see that one of these days when I get a camcorder and record him doing it. Then you'll have no doubt of his ABILITY to do eye gaze, and will understand my frustration in him lacking the MOTIVATION to do the things we ask him to do on it.  

So I'll carry on with the eye gaze situation, and I'll be reporting the good, the bad and the ugly. Video to come soon. You'll be quite impressed, trust me.  

 

  

HOPING THIS WEEKEND GOES WELL - HOMEWORK IS INVOLVED SO WE'LL SEE

I was talking to my friend today, saying I need to blog about something different besides phone calls, supplies deliveries, insurance, appointments, equipment problems, etc. I said everyone by now is probably convinced I'm a rambling, stressed, at-the-end-of-my-rope lunatic. She said, well, it's your life. That's what you know, that's what you do. She has a point haha!

But I also have perspective. I know the reason I deal with all these crazy issues, and that sweet boy is worth every minute of whatever I have to do to keep him healthy and provide for him. If I wasn't dealing with all this craziness, that would mean I wouldn't have Colby. And that's a thought I simply can't comprehend. Actually, I need to take a lesson from Colby. Think about all he goes through on a daily basis. He is so patient, so tolerant, so incredibly amazing. He doesn't whine, he doesn’t cry - he just goes with the flow. Trach changes, port flushes, trying new things on his eye gaze, new nurses, whatever comes his way, he's a champ. Yep, there's a lesson there for me for sure. Suck it up, deal with it, and move on. So I'll try to do better. Focus on the good, the positive, the reason I do the things I do. So very worth it!

Yesterday Colby went to school and I went to work. Some days he tries at school, some days he doesn't give 2 shakes. Yesterday was a 2 shakes day for him. They read a story, he wouldn't answer the questions regarding it. Colby's teacher wrote he was "nonresponsive  today with his device," meaning his eye gaze. Way to go, Colby. I've made it a rule that every day, whether at school or home, he has to use eye gaze and say the letters in his name. Now we'll be working on this worksheet he didn't do in class. How long do you think this will take? I predict around 1 hour to say the letters, and another 30 minutes for the worksheet, along with many tears and frustration on both our sides. Wow, I may be hitting the Strongbow for lunch.

Had supper with my girlie friends on Thursday. Always fun. Luckily these chicks have known me for years. They know I have a tendency to get hot very easy. Hot weather, spicy foods, etc I'll be the first one sweating. Plus I'm convinced I'm allergic to some spice, cayenne maybe. The food I ordered didn't taste that spicy, but oh yeah, the sweat beads were rolling. So embarrassing. Then my cheeks and nose got red. Geez. Good thing I wasn't on a date. Note to self, no Mexican on dates. Got it.

We don’t have much going on this weekend. Homework of course, sigh. My mom is coming over today to help me get the hall closets cleaned out. I have to have someone to keep me focused, or before you know it I'll be looking though old pictures, staring at shiny objects. I have absolutely no focus these days, but no worries. My mom is a cleaning Nazi. We'll have that closet cleaned out, wiped down and reorganized in no time. Tomorrow is the Super Bowl of course. Don't have any big plans for it, but of course I'll be watching. And so will Colby, whether he likes it or not. We may be flushing another fish. Our original goldfish, the one we've had for almost a year, sank to the bottom a couple days ago. I blame Colby's daddy. I told him that fish didn't like roommates.  Now I'm afraid the black bug-eyed fish is doing the same. Let's just say he's acting just like the other one did before the bit the bullet. Doing a lot of hovering. Great, just great. I also blame Colby's dad for this. I mean after all, couldn't possibly be my fault. At this rate, we'll go from 3 fishies to 0 fishies in a week's time.    

Okay, time to get Colby up and going for the day. Up and at 'em, then get that eye gaze going. Wish us luck. I can't stand to see him cry, it breaks my heart. Man, how did I get to be such a meanie-weanie? Just keeping tell myself, he can do this. He's just stubborn. Have expectations for him, he's smart. He's just stubborn. Have a great weekend everyone. Have perspective. It makes what you have to do much easier to do. Trust me on that.