Casey will be 28 tomorrow

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.

November 2nd: 30 Days of Gratefulness: technology

A technology. 

This is easy.  Communication devices. There are many different styles/types of devices for so many different needs of the users. In our case it’s a Tobii (brand). We've had several over the years-actually we have our 5th on order!  

Many users utilize eye gaze to speak and/or use the Internet but Casey is a scanner. It takes a bit longer to use scanning rather than using direct selection but Casey is an expert.  

Casey’s device provides endless hours of entertainment. He is never bored when he has his ‘T’. He uses Google Maps to visit the world, he uses Google to learn about history, famous people, countries, cultures, K-pop, and of course, he Googles ‘girls with big earrings.’  Yes, our boy is obsessed. 

But each and every day I am most thankful for the words Casey uses. He is sometimes stingy with his sentences but he surely gets his point across.  He tells us:  move butt, off ears (take his side things off the headrest), turn head, see TV (means he can’t see well), off shoes (he wants his DAFOs off).  Talk Aunt Chris, call Nurse Julie, FaceTime Aunt Peggy.

He is also good at telling us what to do.  Store Dad.  Kitchen Mom.  Etc.  He'll also ask for Molly Sue and Nugget.  

Without this device we would be left wondering what was going on in his head!  I mean, he doesn't tell us his deep, dark secrets but we are thankful he is able to communicate needs and wants and lets us know his feelings. 

SMA Awareness Day #1

It's been hard to blog since Colin died.  I felt like writing about our lives afterwards would emphasize him not being part of the family anymore since he is not physically with us.  It's true, he's not physically here with us but he is still with us in our hearts every second of every day and in everything we do.  So, I'm going to try to get past that and start blogging again.  The memories that are evoked by reading past posts are so comforting and usually can make me smile.  I want to do more of that. 

Today starts SMA Awareness month. As SMA families usually say "every day is SMA Awareness for us."  Let's then say that this is the month that we try to spread awareness as an entire community.  AND, next Saturday is the world wide candle lighting.  More on that later. 

SMA Awareness Day #1:

Wearing my SMAMomStrong; Stronger Together shirt on this 1st day of August.  

I guess it's not a secret that we have a group for us SMA moms :)  It's a safe place for us to share, vent, support, etc.  So, of course we needed a shirt to reflect what this group means to us.  One of the moms has a business of selling apparel, mugs, signs, etc that was started in honor of their baby boy, Jack.  Jack had SMA type 1 and passed away in 2011.  The mom offered to create logo and produce shirts for our group.  I think they turned out great!  I also have a long sleeved, lightweight hoodie which I look forward to wearing this fall. 

Check out Jumping Jack Apparel and click on the About Us tab to learn more about Jack Jack.  💟

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Just a recap of today's highlights.

Got two loads of laundry on the line today!  Beautiful day, albeit a bit hot but not unbearably so.  I also did a little dead-heading of my poor plants that are still hanging on and a little weeding out front.  Nurse Julie came at noon and woke up sleepyhead.  They did their thing.  Aunt Chris came in the afternoon.  

Big happenings next door.  Big party that's been in planning for ages as it got postponed due to Covid.  We knew the secret which was that Leland was going to propose to his girlfriend.  Casey has been obsessing over it for awhile.  He has a crush on Nicki.  Aunt Chris, Casey and Julie head over and found a spot outside their yard, under the big weeping willow where they had a good view of the band.  Gene and I headed over closer to when the band was to start at 3:45.  We brought some chairs and some cushions.  It was nice because we had a little breeze, could see and hear well, but we weren't near anyone.  No one wore masks. We stayed for the whole first set and I videoed the proposal.  She said, "yes!" Headed back a little after 5.  Poor Jaxon had his supper 5 minutes late.  

Watching Red Sox now.  So happy to have baseball even if it's a short and very odd season. 

Casey turns 17!!!

Seventeen! Casey is 17 today! It's hard for me to wrap my head around being old enough to have a child that is 17, let alone knowing that when Casey was diagnosed with SMA type 1, no professionals thought he'd be here today. Of course we were scared over the years, and those first 3 years were extremely rough, but we never let the diagnosis dictate to us. Casey has done so many things in his life that many 'typical' kids have not done; zip lined, touched a whale, ridden rides at Disney, been to Fenway Park to see the Red Sox-twice, concerts, road trips, etc, and we will continue to LIVE and enjoy our lives that happen to have SMA entwined in it. Happy Birthday to our BIGGEST!

I think that between my Facebook page and Casey's we must have over a hundred birthday wishes for Casey!  Thank you, Cashel Gardner for posting birthday wishes on SMA It Forward because he got tons of birthday wishes from Cashel's friends.  Very heartwarming to think that someone will take a bit of time out of their day to think of my boy and wish him a happy day!

Made Casey a Red Velvet cake.  I was going to use some prepared frosting but it smelled all chemically and tasted gross.  So I made some real frosting with cream cheese, powdered sugar and vanilla.  Of course the recipe I looked at didn't make enough so I had to make more.  But it turned out yummy and I didn't do too bad a job of frosting it.

I enlisted Julia and Karyna to help finish decorating Casey's birthday table.  It took a lot of directing and coaxing them, but we got it done.  We put up banners and streamers and hung some balloons.  I arranged his cake, cards and gifts.  He had a pretty good haul!!

Casey had a good day at school.  He stayed after and went to the community book discussion as part of his Read, Read, Read class from last semester.  Apparently there were two other books as part of the discussion and no one had read Francona, phooey.  Well, Casey had something prepared to say about it and Nancy H had read it as well, so she said a few things and that was it.  Gene picked them up at 3:15.  

Gene had to go back out to get Casey's birthday balloons.  Never too old for balloons!

Colin wasn't the most cooperative kid.  He was J E A L O U S!  Every time someone called for Casey he would yell/vocalize very loudly.  

We opened some gifts and cards but he still had lots left.  He really seemed to like the clothes that we got him from American Eagle--he is definitely growing up!  Colin made awful faces when we asked him if he'd like clothes for his birthday.  

We did the traditional singing of Happy Birthday and the boys 'blew out' the candles with the candle snuffer. We had cake and ice-cream and then it was pretty much time for bed.  

Happy 17th Birthday Big K, Plumpie, The Bigster, our oldest!

It has arrived...

The cold bug has arrived at our house.  Casey has it.  Both Nurse Julie and Nurse Staci came down with colds this weekend (they weren't here over the weekend but were here earlier in the week),

Casey had an ear infection starting around Friday morning...Pretty yucky, some blood and some blobs of mucous came out...so maybe that was his start.  But, he was pretty much fine all weekend respiratory-wise but he was kind of fussy and restless Friday night but slept like a log on Saturday night.  Last night you could start to hear his voice changing and getting a bit froggy.  This morning he insisted he was fine but he was definitely starting to get drippy when he was at school.

So far he's hanging in there.  He's needed more coughing and we're just getting thin stuff out.  Funny how his oxygen levels stay between 98-100% when he's got 'junk in his trunk.'  His heartrate is definitely elevated.  He asked to go to bed early and listen to music so that's where he is now.  He says he feels hot but his temp is fine.  Parts of his body are icy cold while others feel hot to the touch. His nose is dripping and his eyes are watering.   I just loaded him up with some Airborne, Tylenol and some decongestant.  He's listening to the radio and watching America's Funniest Home Videos and humming/moaning/vocalizing like he feels yucky.

I guess it's no school for him tomorrow.  Bummer, because PT and OT were going to work on making a special splint for his switch. 

And, Colin, Nurse Nancy and I were supposed to go in for Picture Day and to try out the evacuation plan.  But, I've heard lots of kids are sick.  (Colin and Casey are in different schools) We could just go in for the pics and the evac and then go home and not go to any classes but still....there's always Make Up Picture Day but that falls in the yuckier sicker season.  Sigh.

On another note.  I went to my primary today about the ringing in my ears.  I've been noticing it lately but I could have had it for years and just not noticed/put it out of my mind.  It's been really bugging me lately though.  We live near a pond and in the summer we can hear the 'peepers' at night when the windows are open.  It's a sound I used to love but now I hear it ALL the time!  Imagine hearing peepers day in and day out.  Not fun.  If I'm really busy I don't notice it much--it's mostly at night when I lay down and I try to sleep.  But it's been creeping into my my daytime life now.

I took a hackneyed hearing test (it looked archaic and one nurse was showing the other nurse so it was kind of weird) which showed my hearing is good.  No ear wax, no fluid.  It's just one of those things that happen sometimes when you get old.  Maybe I'll be lucky enough that it will just go away and not get worse. 

Speech, Blood and Trilogy

Busy day today.  Got the boys up earlier than normal so they would be ready for Courtney to come for a SLP visit at 10:00.

Got through to endocrinology and got the okay for the boys to have their calcium and phosphorus taken today instead of the Wednesday and Thursday that they had indicated.  I guess I'm not so good at reading calendars lately.  Anyway, infusions on Tuesday would be a go if we got the blood work done ASAP so results could be read today....

Courtney (SLP)came and chatted with Casey about camp.  He kept talking about car racing (the ADK 400 which is kind of like a Pine Wood Derby race).  He said it made him sad.  Never did figure out why.

Cheryl came for a little while, too.  She's going to be working with the boys some for summer services.  She shadowed Priscilla a bit in the beginning of the year so we were familiar with her-at least Colin and I were.  Casey pretty much warms up to anyone so I'm sure she'll do fine once he puts her through the paces, lol.

Then we packed up and headed out to Blair Park to get the blood draws.  In the Given Building they have a lab set up now and it's part of Fletcher Allen.  We had a good experience there and we'd definitely go back again, which, apparently we will be doing every 3-4 months.  There was only one woman drawing blood but we were the only ones there so we were taken in quickly.  Gave Colin the choice as to whether he wanted to go first or second.  He picked second.

Casey did well.  She found a vein on the inside of his arm pretty easily.  She got him on one stick.  There's not a lot needed for these labs so he was done lickety-split.  Colin's hands got all sweaty and he was nervous, but she did him quickly and easily too.  Done!  The only drawback, if you want to call it one, is that they didn't even get a sticker!  I mean, I know they are 11 and 15 but I still like stickers and I'm on the far side of 40!

Headed home in hopes of Paul being able to bring over Casey's Trilogys.  He was able to, so we spent some time setting up the vents and trying Casey on it.  Well, once again he fretted and freaked and cried and fussed.  We've told him and told him that it will take some getting used to and that he may feel a bit sore (different chest muscles being used) and that Paul will NOT take away the LTVs until we are all feeling 100% happy with the Trilogy.  I truly think it's an emotional thing.  He says it feels different but okay.  I guess when you've relied on a certain machine to help you breathe for the last 10 years you develop an emotional attachment to it.  So, we'll give him time.

This afternoon and evening we've switched him back and forth.  One of these times, I hope, he won't even realize it and it will all be fine.  Tonight will be tricky.  We have the heated humidifier attached to the new vent so I'm hoping we can keep him on it more of the night than less since the LTV will just have a nose on it.

Casey's Trilogy Trial--finally

We got the call this morning that there really, really was a bed for us to come into the PICU to do Casey's trial on the Trilogy vent.  We got Casey up and in the shower.  We were out of the driveway by 10:30.  Checked in.  Settled in our room.  Then guess what.  We wait.  They had to get an okay sticker put on our humidifier and things like that. 

We got to catch up with a few of our nurses from the past, which is always a good thing.  Of course everyone is always amazed at how big Casey has gotten and how good he looks!

Somewhere around noon or 12:30 we actually put him on the vent.  We tried the same exact settings with the passive circuit and it was obvious that it was not going to work.  The vent is so smart and so sensitive that it was trying too hard to give him the Volume of ventilation that we had plugged in that it was going very quickly and giving him way too big PIPs.  We have Casey's current vent set at a Volume of 350 but that never gets delivered because his leak is so large.  The Trilogy tries to compensate for that and it was just a mess for him!  We could have tried plugging in a lesser volume but I've been wanting to try pressure for a while so this seemed like the time to try.

The pressure ventilation seemed to work well for Casey.  His chest rise looked good- better than the LTV has been to his chest lately.  They had an CO2 monitor in line and it was the same as on his old vent and on the new one. 

We won't get the vents until tomorrow or Monday.  They don't have all the stand in yet but that's the least of my worries.  I don't mind using a chair for a couple of days or propping it up some how.  We have to get bloodwork done tomorrow with both boys so the new vent may not end up coming until Monday.

So, how was Casey in this whole process?  Well, at first he was great!  He loved having the hospital TV, his ipad and his DynaVox going.  Later on, while we were doing the trial, he broke down and had a melt down.  I think it was the anticipation and worrying about change, and things like that.  We ended up giving him a 1/2 dose of Ativan but I don't think it ended up helping.  He finally calmed down but was on the edge melting the rest of the time there. 

We decided around 3:00 that we were good and ready to head out.  Took a bit more to get our discharge papers and we were home by 4:30.  As we pulled into the driveway, Casey started bawling again!  I think he thought we were going somewhere fun.

He still been fussing and melting on and off.  He hasn't been able to tell us what's wrong.  I think he is just glad it's done with and he's letting off his anxiety by fussing.

Colin had a good day.  He likes it when his brother is not around and he has control over everything. 

The bus company is on my list

So, the bus company is on my list; the list of those who have pissed off Mama. Casey's regular morning pick up is at 7:41. The driver is very prompt and we like him. We knew ahead of time that he was not going to be here for this morning's pick up so he would have a sub driver. Well, 7:46 came along and no bus. I called and they said "oh, we don't have anyone down for that pick up" or something of the sort. WHAT? "But we'll send someone down right now." He's finally picked up and it's 8:08. It will be an extremely short day for him today since he goes out into the community and they drop him off around 2:00. Mel (his para) will not be happy! Casey has big plans for this year; lots to do and lots to learn!