What I learned today

This is our Wii set up. We also use this for TV, streaming services, DVDs and VHS tapes. We can roll it to wherever Casey is hanging out.  

Positioning can be awkward but it works!

Of course he is on his device (T) too. 

From Writers Group 10/08/2024  (unedited)

Writing prompt: What did you learn today?

Today was a just do the basics day. Eat, drink, feed and water Casey, make his food, do ONE load of laundry (leaving it for the nurse and Casey to fold tonight as it’s their thing they like to do when she works the overnight) No cleaning, organizing, making phone calls or writing emails or returning calls or emails.

It was a me and Casey day. Casey and I spend a lot of time together but I also spend part of my time with him doing the things I mentioned already so it’s kind of haphazard time. I’m up and down from the chair or couch and in and out of the room. Always trying to be productive.

But today I decided I would put all that other stuff aside and just have fun with Casey. I gave him a choice of art, Legos or Wii. He chose Wii very excitedly. We went super old school and picked a Wii game vs. a WiiU game (Wii U was a much anticipated upgrade from the regular Wii). He’s been into Halloween so he picked Ispy Haunted House. I was glad he picked something that is relatively simple and easy because some of the games we’ve played over the years a truly really hard—hard to figure out and hard to manipulate.

So from about 10AM until 3 PM we played. We played and played. He still had his device on and was doing his Googling but we also chatted while I physically played the game. I talked out loud and asked his advice and we were happily frustrated at times and also happily happy when we figured something out.

What I learned today is that I needed that. I needed to just have a little fun and be with my kid. No pressure to work on the To Do list. No nagging Gene to do things (well, except for helping me figure out what to have for lunch), no thinking about tomorrow. And guess what, I didn’t even take a nap! Usually I get that napping feeling after lunch and I go for it when I can.

I’m looking around me and seeing Casey’s room is a mess, wii games strewn about, bed unmade, medical equipment needing to be cleaned and put away, mail to go through, etc. But it will be there when Writers Group is done and it will get taken care of before bedtime. Because, I enjoyed the fun down time, but life goes on and routines need to be continued. But I will remember next time I’m feeling a little burnt out or feeling a little tightly wound that having some quality time with Casey and doing something mindless will bring me back to center and I can be a better me.

SMA Awareness Day 12-Color me pissy--SMA Candle Lighting video by B4SMA

*****MJ and Brenda posted the video they made of the SMA Candle Lighting.  The collage I made of the boys is in it.  Thank you, girls!!

It was an okay morning.  Boys slept okay.  Nurse Julie was here.  Nancy H is on vacation.

Priscilla (Colin's para-educator) came to visit for a bit.

Gene got picked up by his dad so they could get Grampa's car from the car guy and then he went to work.

It was this afternoon that all heck broke out.  And, I really don't mean it.  Everything was fine but I got grumpy.  Nurse Julie played hours and hours of wii with Colin--Destroy All Humans.  Aunt Chris came later and brought the boys the new Muppet movie, "Muppets Most Wanted" so we watched that.  Lots of ows, and demands from the boys.  Casey:  Mom move leg.  Mom eye hurts.  Ipod now.  Beatles.  Paul McCartney.  Queen.  Dog barks because he thinks its time for dinner.  Cat wants food.  Casey looses thumb to control DynaVox--takes forever to reposition.  AC moves said finger with blanket.  Colin wants to move to his back.  To his side.  Take out ear pillow.  I mean, I am grateful that they can tell me (either by DynaVox, yes/no questions, barks, etc.) what they may need but they are demanding.  And, of course, I can only try to imagine what it would be like to have to rely on others to help me move every single body part.  I grumble anyway, and then I feel guilty for grumbling.  Welcome to my world, lol.

And it's muggy.  Not crazy muggy but enough to contribute to my pissiness, and yes, that is a word in my book.

Gene is home now.  Earlier today he made kale soup with sausage, white beans, tomatoes, etc and that's what's for dinner--a little weird on a warm night but somehow it's become tradition for him to make it during the summer.  Oh, and he bought some crusty bread, yum.

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Random post from the past: 

September 21st, 2006

Scared half to death

• Sep. 21st, 2006 at 6:51 PM

Well, here’s a Colin story. Thursdays, I have no nurse. No big deal, we do fine. Colin had his school from 9-11:30. He watched a movie afterwards and then wanted to flip. I had him on Casey’s bed in the Wish Room. He was on bipap for his afternoon break. The bipap tubing was on a table near his head and his feeding tube and sat monitor were hooked up towards his feet. I can’t even explain what happened. I put him on his bed, in the same direction and was getting ready to flip him but his tubing and cords weren’t slack enough. I turned to try to pull the IV pole closer and I don’t know what happened. Somehow, I must have pulled on his feeding tube and O2 lead and I PULLED HIM OFF OF THE BED ONTO OUR VINYL FLOORING (CEMENT UNDERNEATH)!! I had my back to him fighting with the pole when I heard a sickening thud. He immediately cried and I just went and scooped him up. It was awful seeing him lying there in sprawled out with no way to right himself. AWFUL. He cried, and his heart rate went pretty high. I immediately started crying, which made him more frightened. I didn’t know what to do. I finally found one of our phone handsets and the darn thing wouldn’t dial out. I had to leave him and go into the other room to unplug and replug it in. It’s done that before. I tried calling Gene’s cell, but it went to voice mail. I tried calling his office number—same thing. I called Grandma O’Neil and it took her a minute to figure out who I was because I was bawling so bad. She told me to call 911. I called them and explained what happened and we got hooked up to our local guys. They dispatched someone. Colin was still on bipap and looked fine. Sats were 100% and heart rate only in the 130s. I don’t know how long it took 911 to come. I called Karen Reilly and she calmed me down. A cop came first, then Gene called—him mom had reached him. The EMTs came. They checked him out a bit. No blood, no marks, he was acting fine. I decided to call our primary doc. They were out to lunch!! I called the direct number and the answering machine came on! GRRR! I called Children’s Specialty Center, explained quickly, asked for our pulmonoligist’s nurse, (I know it wasn’t respiratory related, but he’s at our local hospital and I really like him and trust him). I got her on the phone in less than 30 seconds. She said we should bring him in. Gene got here from Essex Junction in record time. He must have driven way over 80 miles an hour! He was shaking when he got here but totally had everything under control, getting Colin’s things on the stretcher, etc. We got all his stuff on the stretcher (with the battery and all) and I went with Colin in the ambulance to the hospital while Gene took our van down. We got right in. The ER nurse brought him a TV right away and we found the Muppets Classic Theater which he’s never seen (note to self—look for this on DVD) and he was quite happy. Our pulmonologist, Intensivist, and the resident came right in. They checked out his arms, legs, eyes, head, etc. There was nothing obvious wrong. But, they wanted to be safe so they ordered some x-rays of his chest area and arms/wrists, and a CAT scan of his head. We did that right away, too. They saw nothing at all—no bleeds, no swelling. Of course, some bleeds could show up later, so we have to watch him to make sure he’s acting normally. So, the resident called our primary to let him know and he’ll check in with us tomorrow. Then, we were discharged. This happened right around 12:45 and we got to the hospital, had all that done, and were home by 3:35—not bad.

I feel awful. It’s always been a nightmare of mine for something like this to happen. Very scary to have to have it come true. But, I think he’ll be fine. He’s been off bipap since we came home and is acting perfectly normal. Thank God.

• Current Mood: drained

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Highlight of today.  The lasagne that Gene and I made.  It was very moist and cheesey.  Store bought sauce, which many would say is taboo, but it worked for us.  We rarely seem to ever cook together.  One, the kitchen is small.  Two, he and I don't always have the same style when it comes to menu selection or prep.  Three, one of us is usually catering to the boys needs.  Poor Gene has  problem with layering and getting the proportions right, so he kind of actually asked me to help.  And, it turned out yummy.

I hadn't done a Saturday night in a while.  I got Gene up at about 7:00 to sleep with the boys for a bit while I went up for a couple of hours.  I did pretty well, except that I was wide awake from 1AM to about 2:30 AM.  I hate that!!  Casey didn't want to turn much and Colin only wanted to maybe 4 times so it was a pretty quiet night.  I think I filled the boys humidifiers at least 3 times each because it's been SO dry!  Oh, our cute penguin room humidifier cracked--not sure when, but I ordered a new one the other day.  I always am nervous about using a humidifier at all because of what can grow, but we are pretty careful  about cleaning them.

We woke the boys around 9:30 or so. Gene threw in Aliens in the Attic and both of them were quiet as mice!  Gulliver's Travels was next.  Casey was quiet for that one, too.  He loves the part when Jack Black pees on the fire in Lilliput :)

Next, Colin got a shower.  Guess who he peed on.  Yes, ME.

Everyone got settled in the living room.  Tried Colin with some episodes of Merlyn and he liked them.  Casey got his football.  AC came and played some wii.  She is very stuck in  part of UP and no one is happy about it.

Boys are in bed.  Watching the Grammy's. 

Last day before school starts!

The boys want to get lots of computer and wii in today since school resumes tomorrow. Goal for the day is to teach Nana H how to play wii!

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Whew. It seems like all I did was go, go, go today and nothing is completely done. I hate that!

Casey had a little bit of a restless night as the night nurse kept fiddling with him to try to get his respirations down. I finally said to give him some Tylenol and when she told him, he immediately went down to 15! She's not here that often so I sleep on the couch in the living room so that I'm available. She only woke me that one time but I felt like I didn't sleep much. I didn't even take a nap today so I deserve to go to bed early (if you're reading this, dear).

I broke Nancy in with wii bowling. She finally got the hang of it and almost beat me! I think if we start slowly, she'll eventually be able to play the more complicated games.

Then we finally tried Casey's Oceans game. It's really cool and intricate. There's a lot to explore and learn. I think that Casey should get to use it for some credit in science! The funniest thing is that we got GENE to play. He did it for quite a while and he caught on quickly.

Casey's favorite part of the day was watching the Patriot's. He also liked watching the sports talk station.

Colin's favorite part of the day was playing wii baseball with me. He liked it because I kept yelling at my fielders.

Gene's favorite part of the day was probably sleeping in, or eating Julie's oyster stew or his homemade turkey soup.

One of my resolutions is to get outside for at least a few minutes a day (I flunked Day 1). I spent a few minutes cleaning out my car (found some weird stuff in it from when Peggy used it while she was here) and wiped the dash and shook out the floor mats. Then I took out some of the junk that has accumulated in the van and wiped that down a bit. Thrilling, I know!\

Worked my butt off boxing up Christmas books, CDs, odds and ends and there's still more. Sigh.