SMA awareness day 15: appointments are exhausting

 

Driving with eye gaze

I’m so tired I don’t know if this post will end up saying all that I have to say. I’m tired. I was night nurse last night but I did get a quick nap in late morning after Casey had his shower and was settled in with his device with Nurse Staci. 

We had a 2 hour appointment scheduled and it’s only about 20 minutes away with easy parking so we didn’t have to leave until just before 2. We had Casey up in his chair hanging out for and all ready to go so all we had to do was roll him out the door when it was time. 

The Chair guy (Cooper) showed us a sample of a Manatee shower chair. We have the Leckey and like it but it’s old in the tooth—probably at least 10 years old. This shower chair has a trolley that is adjustable in height. That will be AWESOME because currently we have to bend down to wash him. Nurse Staci is taller than me and has a bad back so this will be very beneficial. Can’t wait!  The rest of the chair is pretty similar to what we have.  

So then it was time to try driving a power chair with eye gaze. Somehow I just thought they’d put the software on Casey’s device and hook up a wire or two and we’d be good to go. I guess it’s more complicated than that 🤷🏻‍♀️. So we had to take Casey out of his chair and transfer him to another chair that was set up for eye gaze driving already. I usually bring our sling but didn’t this time since I wasn’t anticipating getting out of his chair. But they had one that worked fine. Cooper set uk the laterals and head rest as best as he thought would fit Casey and we got him in. We fiddled some but could get him looking great, but acceptable. At this point I was trying to text Gene to see if he wanted to come in. Of course we had Molly…Texting doesn’t work down in the rehab so Sharon walked me out back and we hailed Gene and Molly. Sharon insisted that we could bring Molly in and make her a therapy dog for the day. Molly loved it!  She got lots of pats and scritches. 

Casey wasn’t very cooperative with calibrating the device and his head was kind of crooked. But we took him out into the hallway and tried to coax him into trying. He is used to using his eye blink to use his communication device and to answer yes and no questions so it would take some concentration. Finally when we left him alone he seemed to try a little more and was making some small but deliberate movements. 

We’re going to need at least another 2 appointments before we are ready to submit. At least one more driving practice and then we’ll have to nail down what brand and model chair to get.  There’s a lot to that, too. We need a chair compatible with the seat we molded and if we go with the eye gaze, a brand that will work with the software. Plus we have to make sure the chair has enough real estate to fit all of Casey’s medical equipment. Apparently double vent tray aren’t readily available. 

Plus, Gene’s insurance is changing after September 9th so there’s that to deal with. And Casey’s primary doc has left so we have to break in a new one. There will be lots of scripts and stuff for the new doc to write, etc. 

So, we are pooped. Physically and mentally pooped. And I ended up telling Sharon (PT we’ve known a long time) about Connor so I had to cry a little so I was emotionally tired, too.  

Thankfully Gene drive across the street to Cumberland Farms and got Nurse Staci and I each a super large slushee as a treat. 

I only took this one pic and zero video. He didn’t drive far enough to make a video anyway :). 

SMA Awareness day 12: worldwide candle lighting

SMA awareness day 9-

Merry Grinchmas!

 Today ‘we’ (I say that lightly since Nurse Staci did most of it) made a sugar cookie house. BUT it’s not totally decorated and assembled yet so pictures will have to wait until tomorrow. 

SMA Awareness Day 8-

Resting Grinch Face 😜

Diamond Art

 Not

SMA Awareness Day 7-make your own fun

With SMA there are lots of things that keep us from doing things on a whim. Things need to be planned and thought about ahead. But we also have things that we can do at home for fun no matter what :). Christmas in July in August #christmasinjulyinaugust is something we’ve done for several years. Each year it’s a little different. 

Today was our first day. I baked some cupcakes and Casey, Nurse Staci and I frosted them, and decorated them with colored sugar and Christmas themed toothpicks. We listened to Christmas music while we we worked. Then Casey insisted he needed Country Christmas 🤠. 

I think we did a good job!  

In book group I read 2 stories from A Little House Christmas; Holiday stories from the Little House books by Laura Ingalls Wilder. 

#ChristmasinJulyinAugust

Darn!  I forgot to take a better pic of Casey with his Santa/Mickey shirt. 

SMA awareness day 6-Disappointment

 Of course life has disappointments no matter your circumstances. But SMA life has its share of extras, at times. This is one of those times for me. 

A friend of ours asked us to go to a concert on the green this evening. I was excited!  I was excited to see her and her husband and to get out in the beautiful weather (we haven’t had a lot of pleasant weather this summer). I didn’t even know the performer, it was just getting out and about with the family and friends that was exciting. 

Well, I thought it was a go. But Gene wasn’t so sure. There are lots of factors and many have to do with SMA and the ramifications. 

*Casey’s behavior is always a factor (he tends to be very loud and nothing can get him to stop)

*we have to be aware that sometimes when he’s in his chair that he can’t release his pee and that can be very painful and not good for him. 

*we always have to monitor his secretions and his medical equipment (we’re used to this, of course, but it puts us in overdrive when we’re out and about)

*Casey’s power chair attendant control is on the fritz. We can go a couple of feet and then the chair abruptly stops so we have to turn it off and on again. 

*plus we have the darn dog. Molly has never been left alone at home so we’d have to take her. That’s added stress, too, because she’s not very used to being among a lot of people. 

I’m sure there’s more but that’s enough :(

So this is what we’re doing.

Watching the Love Boat and surfing the web. 

Molly Sue snoozing on the couch. 

Me on the couch blogging. 
Gene is puttering around. 

SMA awareness day 5/Wonder

 Not much happened today—again!  We are so boring. 

I cleaned out the Volvo. That was the highlight. Not kidding!  

But actually, after the Red Sox LOST again, Casey and I watched Wonder. Years ago I read it with the boys. I remember reading it with Colin the summer that we didn’t do summer school. I made a little summer school for him. I have a pic of a sentence he wrote after we started the book. Both boys always had a hard time with expressive writing. So this was pretty cool that Colin did this. It just came through my Timehop the other day. Darn. I wish I had saved it. I will have to poke around. 

Back to Casey. It’s hard to explain. But much of the time I don’t think Casey thinks that there’s anything ‘wrong’ or different about himself. I mean, I think he’s perfect just the way he is but obviously he is not like most people. But when we are watching tv or out and about and he sees someone who has a physical disability he is always concerned. He thinks they need to see a doctor to get help (this is all in a nice way, not in a mean way). Another example. Nurse Staci’s son is blind. He always wants him to get new eyes so he would be able to see. But he doesn’t seem to think he needs to be fixed himself. On a funny note, sometimes he says the person needs Spinraza. If you’re not in the SMA world, Spinraza is a drug that treats SMA. 

Casey was very attentive to the movie and reacted at the sad parts, the parts when the kids were mean, and he laughed at the funny parts.  For someone who can be a grump much of the time, Casey is truly very sensitive and soft and intuitive.  ❤️  

Also, I guess if you’ve never read Wonder by RJ Palacio this probably doesn’t make sense. 

Here is a synopsis-not my words 

Born with facial differences that, up until now, have prevented him from going to a mainstream school, Auggie Pullman becomes the most unlikely of heroes when he enters the local fifth grade. As his family, his new classmates, and the larger community all struggle to discover their compassion and acceptance, Auggie's extraordinary journey will unite them and prove you can't blend in when you were born to stand out.

SMA awareness day 4 SMA candle lighting event

SMA Candle Lighting

Saturday, August 12 will be the annual SMA International Candle Lighting. You can click on the hyperlink above (I think!) to see the Facebook event.  The details are below. 

August is SMA Awareness Month, and we choose the second Saturday in August to reflect on those who have lost their battle with Spinal Muscular Atrophy (SMA) and honor those living with SMA.  We hope to spread awareness and unity to the families living with it as we all join spreading the light of our candles around the world on Facebook.

Join us by lighting a candle at 8pm (your time zone) @sunset on Saturday, August 12, 2023. Take a photo and post on this event page. #SMAawareness #cureSMA

To learn more about SMA go to www. curesma.org 

Please share with everyone you know to light up Facebook on Saturday, Aug. 12 @ 8pm from wherever you are.

We do this every year as a family. Sometimes we’re inside. Sometimes we’ll go outside. It’s always a little different for us each year. There are some families and communities that go big with this!  The Reeds in Ohio host a big event and they’ve been streaming it so we usually tune in. Some SMA families attend and also some of the docs and researchers at Nationwide Hospital. They do a beautiful job. 

It’s a weird thing to wish for, but I wish there were more families around here that would be invested in hosting/attending some events like this. It feels kinda isolating here sometimes. We haven’t found anyone that’s really like Casey in school, the Howard program or from seeing people around town. Sigh. What I mean is we haven’t found anyone with a diagnosis in which the person is similar to Casey in that they use a wheel chair, are trached, non speaking, and uses a communication device…

Here are some pics from last years. The 2014 montage is the last candle lighting with Collie. 💙💔

SMA Awareness Day 3

 

Made by Cassandra Wilson 

Cassandra is an SMA mom who tragically lost her son not too long ago.  He was such a strong, cute boy, but circumstances cropped up that ended up taking his life.  (that is a weird way to put it but I never know what to say, even when I have lost a child ultimately to SMA as well).  Anyway, she has been making these awesome profile pics.  I love this one!  I may have her do one for Colin, as well.  He is definitely my super hero even if he is no longer on this earth.  

Napping and Day 2 SMA Awareness Month

 I am a napper. A happy napper. My dad was a napper. Sometimes when I settle in for a nap I automatically lay on my back with my ankles crossed and mg hands on my chest in a certain way and my head thrown back a little-just like dad. I can picture him in many places napping.  Couches in different houses, beds, bunk or deck on our boat, etc. 

I was nurse Mom again last night so when I take a nap the day after I’ve done a night I don’t feel as much guilt as I do when I nap when I wasn’t nurse. So I had a good one. The weather was cool and no humidity so I thoroughly enjoyed it. 

……

Casey has been into bagpipes again. He watches videos with parades and he watches the Coronation. Nurse Staci still sits next to him when he’s blaring his videos. I can only take so much so I usually find some task to take me away to another room 😂. 

Casey is not a napper. He did nap the last two times that he had the infected eye. He was miserable. Another time he napped was after his Spinraza injections. Also, I remember he napped when he broke his leg. I knew something was very wrong when he fell asleep that afternoon!  (This was years ago and I remember it vividly). Oh he also will nap occasionally around the time change-he fell asleep at school once or twice during the time changes!  

Gene is not a napper but he will go upstairs in the late afternoons and watch a little tv, do some work and lay in bed for a bit. 

All you ever wanted to know about the O’Neill napping habits, and more!

Thank you B4SMA 

MJ and Brenda are also resharing some graphics from past years. 

Today they shared our Collie 💙

Day 1 of SMA Awareness Month

 And I’ve got nothing. I’m the past I’ve worn an SMA t-shirt every day of August and posted the pic. I’ve blogged every day of August one year. One year Casey wore an SMA shirt every day and I posted it. But I’ve got no new ideas. I’m not very savvy with graphics and fun stuff like that so that’s out.  I could do a fact a day but that’s a lot of work and others do things like that so I’ll leave it up to them ;). 

Not much exciting happened today. Except, I opened a gift from Shannon and it was very cool!  There is a video of it but I don’t know if I want to out that here. Maybe I’ll try to get a screen shot from it.  

Casey was a good sleeper last night. I wasn’t :(. I kept waking to check on him.  And there was a horrifically strong skunk smell coming in the windows. I finally closed them. The night was perfect for sleeping and I was not happy to have to close the windows. 

Casey opened a box from Shannon and Addy that had all sorts of fun Christmas in July crafts. He laughed and laughed. Book group is celebrating Christmas in July/August next week. We’ll be able to do a craft a day plus do a couple of crafts on Thursday while we zoom. I’ll be sure to post some pics. 

My birthday surprise!

A normal day

 I got to get out of the house today. PT, drop off utilities bill at town office, dollar store and post office. Feels good to get errands done. 

I wish I had taken a picture!  I had to run to PT before Casey was settled all the way in his chair. I alway comb his hair because no one does it like mom does :). I came home to Casey’s hair full of pomade, mostly sticking up, and with the comb still in it!  Nurse Staci and Casey thought they were soooo funny!

Nurse Alice had to cancel her overnight. So I’m on duty. I took a nap to prepare.  

Casey and I tried to take a selfie with our new Zeb’s shirts but this is all we got. 

Beautiful day

 We finally had a beautiful, fresh day without too much humidity and NO rain!

Casey slept in until 11 like normal for a Sunday.  Nurse Julie was able to come today so that was good.  Shower and trach change for Casey and then up in his chair and outside!  Chris came, so the three of them sat outside and chatted.  Casey's device was somewhat cooperative.  He had his umbrella and then a receiving blanket to help with his switch since the sun can mess with it.  

I did a bunch of cleaning.  Worked in the laundry room and did some sweeping.  Dog hair galore.  

The Red Sox lost again today.  

Gene worked on mowing and weed whacking.  

That's about it!

Dad

 Dad passed on this day in 2016. Chris and I totally believe that he waited until after my birthday to finally let go. 

I really need to post some different pics of dad. I realized that I have been reposting the same ones. I will have to dig some up. For someone who likes pictures so much, I am not very good at organizing them. 

A little bit of serendipity happened today.  Gene gave me one last little gift; the fruit slices that are kind of jelly and that have sugar all over. Kinda like these. (Not my pic)

One of Dad’s favorites 

He presented them to me and I was kinda stunned. I asked him if he did it on purpose because he knew that dad liked them but he said, no. I guess he just felt like giving them to me today or he forgot yesterday. I don’t know. But I feel like it was a little sign. 

I wasn’t going to open them but Casey wanted me to. I asked him what color and he said red. So I ate it :)

My birthday

 7:15 PM and I could go right to sleep!  Had a big day. 

Nurse Julie came for Casey so Gene could work and I could have a day out. 

Chris came over about 9:30 and then Peggy and Julia picked us up. We headed to The Shelburne Museum. I’ve been many times but the most recent was several years ago and every time the experience is different. They have their regular collections but they also have lots of changing exhibits. 

It was a pretty hot and muggy day but I think we did well. We didn’t complain much!  There are lots of buildings—some modern and some old, some air conditioned and many not!  So we were in and out a lot.  

We had lunch in the cafe.  Nothing extravagant, but it was quiet and clean and the food was good.  Chris and I split a chicken salad sandwich.  Had some chips and iced tea.  Peggy and I had a vanilla/chocolate twist creemee.  It wasn't the best ever, but it was very refreshing.  

I definitely loved the carousel.  I also loved the Mary Cassats and Monets that are in the regular collection.  The circus train (I think 200' long!) was super cool to see again.  And all the period doll houses were awesome.  The Ticonderoga was cool, too.  Dad would have been pleased that we checked it out.  

We did A LOT of walking.  Peggy said her Apple watch said 8000 some odd steps, and that was just at the museum, let alone the rest of the day,.  We only took the shuttle (extra long golf cart kinda thing) once.  It was a nice relief and the breeze was wonderful.

AND GET THIS!  I did not buy anything in the gift shop!  My purse was in the car, so I would have had to have someone else buy it for me, but I didn't feel compelled to buy anything.  It's all beautiful merchandise and I could have picked one of everything but I really am trying to minimize and downsize.  I have pictures to remember our day.  

Made it home by 3 something.  Made it in time to do Book group with Casey.  It was movie day so we watched the new 2023 The Little Mermaid.  

I also got some nice gifts but I won't detail them here :)  I will say that Chris got me an air purifier with a reusable air filter.  We've never had one, believe it or not.  I'm hoping to use it in our bedroom--carpet, dog, cat, etc.  

I'll also say that I enjoyed all the texts, calls and Facebook posts!  It's really fun to read them all, thank you!

Loved the carousel!

The Ticonderoga

Chris in jail!

Me in jail.

Purple flowers for Connor

Casey insisted I open his gift,  "Mom open now.  Present.  Open."  So it was late but Gene took it out of the freezer and unveiled it!  It was a homemade icecream cake that Casey and Nurse Staci made!  It's never too late for icecream so I had a piece before bed :)  It was very yummy.  Gene said they were doing all sorts of things in the kitchen, mixing and crushing and using the Kitchen Aid.  He was very proud.

Here we are at the unveiling.  Best picture that I could get.  If Gene took it, it wouldn't have been much better, haha.

See the cookies in it and the sprinkles??  Yum.

I was very happy when Deb came and I could head up to bed.  Took a while to wind down, but when I fell asleep, I was zonked!

What I did today

 What did I do on my 59 year, 364th day on this earth?  I spent some time with my 6-year-old great nephew!  Nothing better than that to keep you feeling young!  

Let’s see. What did we do?

*he showed me his Minecraft and Roblox, of course. 

*I brought over a bin of Mr Potato Head so we played with those. He liked making a Transformer one. 

I also brought over a couple of games. 

*We played Jumpin’ Monkeys!

I won fair and square!  He was okay with it :) 

*Then we played a Scooby Doo game. He won that one. 

*We also took selfies. 

I don’t know why they’re fuzzy 🤷🏻‍♀️

*We also ran up and down the hallway and around the dining room table. I was bouncing a ball and had to keep bouncing it while trying to catch him. He also used his cool scooter for a bit. We got the okay from RJ as long as we didn’t do it in the kitchen :). 

*We also just chatted and rough housed and looked at some of his toys. 

I love that he is a spontaneous hugger.  🤗. 

Kind of an aha moment

 Casey has 3 pairs of eye glass frames that his switch is mounted on. We’ve been having a heck of a time periodically with his switches and device. Sometimes we think it’s the device.  Sometimes it’s positioning. Sometimes it’s one of the switches. Who knows!  It’s very hard to trouble shoot and someone is not very patient with us which gets us very frustrated. Today we dug out a brand new switch/glasses that I had saved. Put them on and bingo!  Worked perfectly. I think the wires on the others are somewhat compromised and they have to be in the proper position to work right. At least that is what we think today. Who knows what tomorrow may bring!  

Casey and I listened to music while Staci had to go to an appointment. 

Here’s his requested play list:

Chinese music

Black Pink

Heavy metal 

Love songs

He had eclectic taste in music!  

We are so boring

 We used to do more fun things!  Really we did. Covid initially took the wind from our sails and it seems as if we haven’t found it again. Granted, Gene works all week. It’s hot and humid and rainy. And I’m chicken to drive the van far.  Actually I haven’t even driven this van and we’ve had it since November/December. I guess I should remedy that and at least drive into Milton. I’ll put that in my list. 

Other than that. Just regular stuff. Casey had his shower and trach change. The doc messaged me back and we decided to try a longer dose of Ciprodex drops; 10-14 days, twice a day. I’m also going to donut on his g-tube. It’s so weird that when he has something going on around his trach stoma, his g-tube area gets a little affected, too, ans even his bum sometimes. 

Highlight of the day. Julie and Bill came by and helped us figure out placement of two pieces of artwork and helped hang then, too. It was good to see Bill and catch up!  Julie will be here on Friday to work a shift as it’s my birthday and I’m going out on the town!  Don’t get too excited!   

The only pic I took today was of Casey’s trach stoma  I don’t think anyone wants to see that (unless maybe you’re a medical family!)  I came across this one of the boys so I thought I’d post a cute brother pic