Sunday, October 15, 2017

Us, Lately

Jimmy all transferred into his seat and ready to fly!

Spencer helping out around the new place


I feel like a general update is due.

Jimmy: he's going through a weird spell right now, and it's no fun.  He's fatiguing badly, having extremely uncomfortable muscle spasms in his abdominal area for the last 1-2 weeks, and he's been miserable. A doctor visit may be in the future if he doesn't see some relief in the next few days.

We've also learned a surgery is on the horizon.  Nothing too urgent, but something we maybe knew was coming. He has to have some scar tissue around his trach stoma cleaned up. The last five or so trach changes at Shepherd have been awful for him and it's not going to get any better until this surgery happens. One of them, they had to overhead page a doctor stat because Jimmy's RTs could not get the trach back in. So dangerous. During his ENT scope last week, we also learned that he has really bad heartburn (it probably doesn't feel like regular heartburn to him). We've been wondering why his voice was so hoarse for awhile; Doc said that was why. He was given meds for that, thankfully.  It's already gotten better.

We had a really great stretch for awhile, and a successful flight to NOLA with him feeling well in spite of extremely early travel times. Nothing happened to his wheelchair (go Delta!) and we found a company that delivered/picked up an accessible van to the airport for us to rent while in town.  Delta actually has a great accessibility department that was easy to work with and bumped us up to Delta comfort so Jimmy could have plenty of room -- at no cost.  It was so nice to sit next to my husband, so normally, if that makes sense. No aluminum between us. Gah, it was so nice.

This was Jimmy's first flight, post-injury. Fun fact: the last flight we took together was to New Orleans, as well, on our honeymoon about two months before the injury. 

Once we got past a certain little hiccup that may have involved me forgetting my ID at home, taking the MARTA back to Decatur, sprinting across town, learning that I wouldn't make it back in time, and finding a later flight while Jimmy went ahead and flew with his nurses -- yeahhhh, once we got past that craziness, it was a phenomenal trip. (I was so mad at myself. But, so busy making sure Jimmy had everything he needed, forgot to double check myself.)  Needless to say, when I finally got to the hotel and got settled, I had the best bloody mary of my life.

We ate at some of our favorites places, Jimmy got to meet Tony Romo (totally nice guy!), we got to sit RIGHT BEHIND the Pats bench for the Saints v Pats game (bucket list!), gambled a smidge (I was infatuated with the Anchorman nickel slots - hilarious!), and uh, did I mention the FOOD there and, the bloody marys that have fun things like bacon growing out of them?! Heart eyes.

The cops in NOLA were super accommodating to us as we walked to the Superdome from our hotel, stopping traffic for us as needed. And once we got to the tailgating courtyard, a nice fella wanted to offer NOLA hospitality and buy Jimmy a beer.  We were extremely in awe of how nice everyone was to us, considering were were both decked out in Pats gear.  The perfect end of that day for Jimmy, aside from the W: the Pats Defensive Coordinator came up to our seats after that game, and thanked Jimmy for coming!!! What?! I really need the Pats defense to get better so he keeps his job because I LOVE HIM. So mad I didn't get a pic.   

Spencer:  I cannot believe this one will be 3 in a few weeks.  She's going to school (Children's Morning Out) four days a week and it's the best thing for our little social butterfly. She adores it and it keeps her busy in the best way.  She's also "playing" U3 soccer once a week. Translation: I chase her around 30-40 minutes while she tries to constantly bolt to either playground located on each side of the field. Toddler soccer definitely sounded like a cute idea when we were signing her up. Yeah, no. Kill me now.

She also loves helping my to feed the fishies and water the flowers at the new house.

Me: So yeah, we bought a house! Our first one!  It's a few blocks from where we live and a complete time capsule. Never been updated, built in the 50s, super mid-century with tons-a-wood-paneling. So, we're gonna update it a bit and make it a little more wheelchair friendly. It's a ranch with a lower terrace level. It's got a massive yard (!!) and a beautiful back patio that basically sold the place for Jimmy. Selling point for Spencer? The fishies in the back fountain left by the prior owners and the chickens next door. 

I've been busy coordinating all of the things that come with new home-ownership, and renovating. Construction should begin in 3 or 4 weeks and we're hoping to be in the house in January. I think Spencer will love having her own room, Jimmy will love having his own man den and I will love it all. I'm thrilled. It's very exciting getting to work with someone who is helping me with layout, etc. and a contractor who is familiar with disability modifications. We cannot wait to finally be in our home. The next few months are going to be a whirlwind.

All of this + more is keeping us busy these days.

Excited to share some before and after pictures of the house as the work begins!


Monday, August 7, 2017


This pose, this little one. So much personality.  My Spencer.

This was right after ice cream, and a quick run around a hot Square. She's so curious and beyond enthusiastic about most aspects of life.

We love her so very much.

Tuesday, June 6, 2017

Two and a Half

Spencer Rosalyn, 2.5
Decatur, GA
My Spencer is Two Point Five! There's NO way she's a mere six months from THREE. Nope. Nope. 

Annnnnywho, her well check-up went great! She's a healthy, bright little girl. And tall!

Size 6 diapers.
Size 3-4T clothes.
Size 7-8 shoes.

Still no back molars yet, but I think they're coming. 

So what is Spencer doing these days?

She loves:
"Dorothy" (Wizard of Oz)
Mary Poppins
Sara & Duck
Daniel Tiger

My FAVORITE thing she says right now is: I wanna jump in the CUDDLES! (Instead of puddles - I die.)

She also said for the first time last evening, "I love you to pieces!"

She has recently picked up on this: when I'm trying to discipline her, she'll quickly say I LOVE YOU MAMA! And hug me around my neck. Howwww has she learned this tactic, already?

When her Dadda has bad leg spasms, and his legs flail uncontrollably about, she gets truly concerned and says, "Mama help! Mama help!" She pulls me to him and puts my hands to his legs as to help put his legs back up. She knows he needs some assitance.

Naps and bedtime are not her favorite. Tears. Angst. Diversion tactics such as sudden thirst, hunger and the need to say goodnight to Dadda. Again.  It drags on and on... aggghh!

Sharing is tough at this age for ole girl.  The temper and tantrums have also started. 

She loves being tickled.

She loves playing dress up with costumes, hats, crowns, jewelry, and Mama's shoes.

She loves to dance and sing and she LOVES music.

She started her first swim lesson recently and adores it. She's progressing quite well and likes going underwater.

She goes to Children's Morning Out 3-4 times a week, for a few hours a day and loves, loves it! It's her happy place. She has completely blossomed in this environment. She has art, music, snack/lunch, outdoor time, circle time, etc. She comes home dirty and exhausted. It's wonderful.

She's a social butterfly, as she always has been.

Pure joy to be around, even when she's not.

Love you Spencie!


Monday, March 27, 2017

Yep, A Stroke

Friday, less than 24 hours after his stroke.
Emory Midtown
Atlanta, GA
Stroke. What a scary word, right?

This past Thursday evening, Spencer was up late. Past 9pm. And, while I was begging her to go to bed, she asked to go say goodnight to Dadda (magical stalling tactics).  So we did.  I let her creep in his room.  He was very tired and had dozed off.  So I figured I'd let her wake him up so she could see him.

She said something, it didn't wake up him, and I remember thinking, he must be exhausted. Shortly after she did happen to wake him up.  He woke up and greeted her happily, normally. But then, the more him and I were talking, the more we both realized he was mumbling.

He managed to make it clear he wanted to come off the ventilator.  This has happened before where he's had a bit of carbon dioxide build up from the ventilator known as Hybercarbia. What have we done in the past to fix that? Take him off the ventilator.  This time, it didn't help.  We thought it did for a few minutes, I even turned his light off to say goodnight and was about to be on my way out.

Went to say goodnight again and he said something that triggered me to turn the light back on and mute the TV.   I went by his side to look in his face and see if there was more to this.

He was getting more scared as the minutes passed, as we were talking about what to do, what could be happening, trying to rule out the possible vent issue.  I remember him looking at his wheelchair ventilator trying to tell me something and he just couldn't do it. He was confused and scared.  He did say a few times, "I don't know what's going on!"  He had killer head pain... he was screaming and nearly crying because of it, pleading for help.

I asked him if he wanted me to call. He said yes.


The operator gave him a speaking test over the phone. "The early bird catches the worm." It took Jimmy four tries.

When the medics arrived, they seemed a little.... not phased.  Jimmy was talking, but was still stumbling here and there. I think they assumed... sick/paralyzed dude, on a ventilator, pretty normal sounding to them.

I had to explain he didn't have a brain injury, he was usually very quick-witted and quite frankly, a smart ass. The delays and absence of words/phrases was not normal.

Some of the normal tests given to possible stroke patients... limited with a quad.  No raising of the arms or anything of that nature. Although his smile seemed even to me.

Jimmy was talking to one of the guys getting medication notes. He asked Jimmy when his last dosage of pain meds were. Jimmy attempted to say his nurse's name who gave it to him (a veteran nurse of ours) and he couldn't say her name.

Yep. Time to go.

Off the ER Jimmy went.

I stayed home with a sleeping Spencer while his nurse on duty rode with him.

I sat on the couch in my suddenly all-too-quiet house. Tears. Fear.  This was new territory... did my husband just have a stroke? Is he gonna be okay?

I kept my phone on all night, tried to sleep a little but was looking for updates from his nurse. Thank god he was so good about answering me promptly and with details.

Jimmy was stable.

He was kept in the ER all night, waiting for an ICU to open up. One never did, so he was transferred to a different Emory campus, but not until morning.  I think the reason ICU was warranted was due to the fact that he used a ventilator.

They didn't formally diagnose him yet, but so far we had heard the term "ministroke" thrown around.

Not surprising. But then the Googling happened. So, it was hard not being there to have someone to ask my questions to once I started reading up. Ministroke clearly sounded better than stroke, especially the big scary ones.

I arranged for some help with Spencer (and thank Jesus Mary Joseph to those who saved my booty!) so I could go to the hospital to see Jimmy. He hadn't been transported yet, but I went and waited. He didn't arrive until 10:45a.  He was on a stretcher and passed the waiting room I was in. His eyes were closed. Why were his eyes closed, I had wondered. I didn't get to see him until past 11:30, once he was settled and they did their check-in requirements.

It was so dang good to see him. He sounded so much better, verbally, since the last time I saw him.

I stayed with him much of the day. He was able to make a few phone calls, holy amazing! To his mom and mine. He was able to eat and read some Facebook.

The night prior, they had done a CT scan -- results were good.

The plan going forward was to get an MRI, a more detailed view to see what else they could see. Turns out, with Jimmy's DPS (implanted diaphragmatic pacer) MRIs are not a good idea. So they ordered a repeat CT scan.

Second CT scan came back showing he did indeed have a stroke.  His doctor called me at home Saturday (I was home with a stomach bugging Spencer) to give me some info.  He had 1-2 spots where there was a blockage/clot. It was left side, where the language center was -- hence the symptoms we were seeing.

Jimmy happened to recover relatively quickly from this event.  We were lucky, considering.

Jimmy also had an echocardiogram that day.  They wanted to make sure his heart wasn't producing any clots.  The echo showed it wasn't. So, he was eligible for discharge.

Jimmy got home very late Saturday evening. He was so happy to be home and chatting it up with the EMS ladies who transported him back.

Sunday, he was up in his chair, extremely weak and I was shocked he got out of bed at all! Think the Tarheels were calling, he probably wanted to be up to watch. But GAH he felt awful and had bladder issues which made the day even more awful for him. I'm sure still a good awful, since he was at home with his girls, and ya know, alive and all.

His head was/is still a little sensitive and tender and he still needs help with some words... words and phrases he normally could get by himself.  His doctor said that should iron itself out over time, but could come back when something else is going on in the body. ie, bladder infection. Soooo, that could be uber scary.

His doc told me having a stroke does put you at higher risk of having another one. So, we'll just be over here trying not let our worry and fear show.

What caused this stroke?  For Jimmy,  two big risk factors: immobilization and diabetes.  Both from the injury.

He's okay. We're okay.  I know many wanted to know bunches about what happened and this is most of what I can remember.

Happy to have our Jimmy back home. And feeling pretty lucky.


Monday, February 13, 2017

Spencer's Christening

Spencer Rosalyn, 2 years old
St. Thomas More Catholic Church
Decatur, GA

Spencer was baptized this weekend! It was such a sweet little ceremony, and we shared it with another local family, baptizing two of their children. Family and friends were there to witness it, many traveled hours and hours to come. There were tears, laughter and love.  She's still little enough for me to hold her over the baptismal font while the Priest poured the holy water over her head, and still little enough to also cry bunches as he did it.

Happy Baptism, my Spencer love.

"If, therefore, there is any grace in the water, it is not from the nature of water but from the Spirit's presence there." - St. Basil the Great, Doctor of the Church