Yesterday marked two weeks since Brady’s (ready?) laminectomy and tumour resection. I’d like to tell you where he stands (ha!) today.

Mostly, between parallel bars.

(Yes, a lot of bum cupping goes on in therapy.)

Seriously though, let’s talk about where he’s at.

Here. He’s at City Hospital.

With his guitar, clothes, gifts, books, electronics, products, and even his own coffee maker! Aaaaand more coffee when I bring it, which is almost every day I’m able to be there, thanks to all the coffee gift cards we’ve been given!

Ok, I’m actually done now. My mental energy has effectively emptied for the day. Jokes are drier than ever.

Actual updates for Brady are as follows!

Brady is OFF the bladder scanner, the commode chair, and nighttime wakeups/vital checks. He is wowing the people around him, having only been in the rehabilitation program for just over a week. He has made friends with the woman who cleans his room, and he is on beautiful terms with all of the nurses. The vibe in his rehab program is really encouraging.

Brady is independent in his wheelchair. He’s insistent on doing everything himself that he can, getting in and out of it smoothly, and he’s adapting things as he needs. He removed the armrests because they were cramping his style, and hooks his transfer belt over the backrest.

Brady has OT (occupational therapy) and PT (physical therapy.) I had the pleasure of attending both today! I hadn’t had the chance to meet his OT yet, but she was very warm and nice. She challenged him to cook himself something while she and I went and talked bathroom modifications. Brady made some basic fried eggs and toast, from his chair, in a kitchen with countertops the height of ours at home. It was encouraging! He is being asked to go a bit more elaborate next week 🙂 His OT suggested he cook he and I lunch. We just have to get her a grocery list. What should he make?

PT is always a good workout. Today, Brady did some more sensitivity tests. So far, there are only two muscle groups that just refuse to wake up, along his right shin bone, and those are responsible for his right ankle/foot. That sucker just flops. But in speaking with the doctor overseeing his rehab, she has decided he’ll go to a casting clinic on Monday and get fitted for a custom AFO (ankle foot orthosis) brace. When he has tried on the ones they have available, while they aren’t a perfect fit, they do make his steps SO much smoother. So thats an exciting thing to look forward to!

Brady does stands with bars beside or in front of him. In front is harder, but he does it! He worked on a modified exercise bike today and walked about half a mile in 6 minutes. His legs did that!!! He also works his upper half actively in the gym. He’s gonna be YUGE! 🙌

This morning, Brady had gym time, OT, and PT, one after the other. His right ankle was a little swollen at the end of it all, which was important to note but not concerning in a big way. Its important to keep an eye out for stuff like that because, while Brady can’t feel that ankle, he can still injure it, obviously. His PTs suggested he elevate it, which is extra fun since he got his bizarre new boot!!

This…..

Is to prevent this.

It looks a little crazy, but they really want to train his muscles to keep that foot straight. Besides the little triangular block on the side of the boot to keep his foot straight, it also elevates. So, win! He slept with it last night without issue, so there’s that!

Tomorrow, a community OT is coming to our house to do some measurements and report them back to Brady’s City Hospital OT so they can better judge what his needs will be. This is both exciting and discouraging. Originally, the plan was for Brady to come for his home visit with his current OT. However, because we live outside of Saskatoon, it had to be referred onto a different OT group, and as the OT will be in the area tomorrow already, he’s eager to come. It makes sense, and he said this will not be the only home visit, so I guess we’ll try to catch Brady with the next one. Its too bad, but getting the ball rolling is never all the way bad. We keep hearing that Brady is an incredibly quick study, and while we’re not holding our breath, it would be completely amazing for his program not to stretch out any further than necessary.

ALL of this being said, we’re all so eager for Brady’s legs to come back to him that we keep forgetting that Brady had MAJOR surgery just TWO WEEKS AGO!!! His staples are out and his incision looks amazing. No stretching or separating or infection. But of course there is still inflammation. Brady’s back muscles get sore, as you’d expect, but he is one determined man. I haven’t heard him turn down a PT request yet! I am SO proud of him!

As I sat beside him after lunch, snuggled up, all teary and messy, a lovely woman came in to collect his tray and stopped to look at us.

“Aaawww,” she said. “You guys are SO in love!”

She couldn’t be more right.

Ok, friends. Be ready. We’re going to talk about bathroom stuff today. I AM allowed to discuss this all, yes. I have Brady’s full permission. And I’m also a classy enough lady that I won’t steal his dignity. The reality of the situation is that NO ONE talks about bathroom stuff after surgery, and its important!

If you’ve part of this for a LONG time, you’ll know that Brady has been struggling to pee for months. If he really has to, its easy enough, but when he just wants to fully empty his bladder before bed, or something along those lines, it could take around 45 minutes of focus to make it happen. It only got worse over time.

Since Brady’s surgery, as you know, he has limited sensation below his ribcage. This, paired with the need for a catheter for the first stretch, has not helped the pee journey.

When Brady left RUH and went to City Hospital, they got rid of the catheter and helped him through the steps of being able to use the bathroom independently. Now, this is where I hesitate about details, because I don’t want to overshare, but I also feel like people have no clue what all goes on. So I’m going to talk about things, but not in crazy personal detail to Brady. Fair? Yes.

So there is a “bed urinal” which means about what you can imagine. Its awkward but it gives the opportunity to sit and wait, and be independent from a catheter. When a person uses that, its usually followed up by a bladder scanner to see if the bladder is retaining any urine, and if so, how much. That has been his system for a while.

Along with this, there is the commode chair, which is about as glamorous as it the bed urinal. Its basically a beefy plastic chair you might find stacked up in a school, but it has arm rests, and a big hole cut in the seat. Its an easier method of getting a patient to the toilet when they still need some assistance. Its vulnerable and awkward, but it works. At RUH, it took a whole lift to get Brady on the commode chair, but he was able to transfer himself on and off of it in the recent future.

Today, he was FINALLY able to get from his wheelchair to the toilet, and back again. This is a HUGE victory!!! Besides all of that, he has regained enough sensation to know better when he has to pee, and he is retaining next to nothing. He is officially DONE with the bladder scanner.

I know this is all “personal” information, but its kind of huge in the recovery game, so we’re happy to share it. Brady pees easier now than he did before his surgery! This is VICTORIOUS!!!!!

The rest of the bathroom stuff is less exciting to talk about. Bradys pain meds are a friend to his back but not to his bowels. One day, that will be a lot more independent too, but for now, he needs some help, and thats ok. The fact that he can get to the bathroom and take care of everything in there on his own is a gigantic saving grace in terms of dignity and independence.

HUGE congratulations to Brady for needing to pee, and being able to do it! Man, the things we get excited about now 😂 Bunch of old folks, I guess!!

Amidst ALL of the crazy over at our home, Rowan’s birthday is today!!! Even if you exclude what we are currently dealing with – Brady being on an extended hospital stay – the year has still been HUGE!

We did the covid thing! We built a camper! He rode a bike! He started kindergarten! He lost teeth!

He even… *gasp*

GOT A HAIRCUT!!!

Yes, friends, it FINALLY happened!! He was ready 🙂 This morning, be brought me the brush to ask for help with his hair for school, and the second before he handed it to me, he laughed maniacally, realizing those days were kind of over for now! No more braids for you, mister!

This child is a picture of overcoming hard things. He has struggles, and the way our lives have rolled in the recent past have not made things easier, but his effort has not ceased. His heart is HUGE and warm and just SO BEAUTIFUL. You’d have to see it to believe it, but you can trust me.

I love you dearly, beautiful Rowan. I believe you were meant to be mine and I was meant to be your mom, despite our challenges together! I am SO excited for the year to come, and for the strides we’ll make! You are exceptional! I hope you can feel how loved you are by so many!

Nine? 😬 I don’t even know. I think its nine, so I’m going with it.

Here’s the thing. I skipped Melatonin Monday last week and I don’t have big updates this week either. This isn’t because Rowan has been cast to the side. Its because his behaviour and struggles have changed greatly due to the situation of our family dynamic.

What I can tell you is that Rowan has good days and bad days. Its a hard thing to judge. His bad days seem BAD, but I don’t know if they’re worse than usual, or if I just have a lower tolerance. I’m not sure. We still always close the night off warm and soft and loving, in prayer together.

That being said, Rowan sleepwalks regularly, and while I know he’s safe and cared for, to me it indicates that he is still struggling, even subconsciously.

Last night, for the first time, Rowan walked in his sleep twice. The first time, he knocked on the door, but then didn’t answer when I called to him. He was sitting on the landing by my room, and couldn’t really articulate anything. I started to slowly get him back to his room, and he tripped on the stairs and got really scared. I was holding onto him, so he was safe, but he was scared. I don’t think he woke up, though. I got him back into bed no problem.

Later on, less than five minutes after the lights were out for the night, he knocked again. He was standing all crooked outside the door, whimpering that his legs hurt, and were numb, and that he couldn’t walk. It doesn’t take a genius to read that as exactly what it is. Poor, anxious Rowan. As usual, he was easy to take back to bed, I prayed for him, and he stayed put for the rest of the night.

We will continue working for Rowan’s health and wellness, but if I skip a week here or there, its not because I’m too busy to care about him. Its just hard to know whats what right now.

Thank you for your continued overwhelming support.

Today is my first day completely apart from Brady. There are details to work out this week, and the uncertainty is hard. At Royal University Hospital, I could visit Brady every day. He was only allowed one visitor, one visit, every day, but it was still every day. At City Hospital, in the rehabilitation program, they are only allowed one visitor twice a week. Its a little bit shattering. So after being together Friday and Saturday, we opted to not see each other today. Or tomorrow. Ugh. However, tomorrow Brady will meet our social worker (I guess everyone in this program gets one) and he can advocate for more time together, which he absolutely plans on doing. After that, we’ll have a better idea of how our weeks might look. 

I had a pretty crumbly evening yesterday. I cried a lot. I was SO beat. I followed the evening up with a subpar sleep and was in no shape to do the day when the time came. Cher lovingly got the kids breakfast and played with them so I could rest extra long in bed, and even brought me some coffee and food. I got to FaceTime with Brady, and some kids popped up a couple of times to say hi to daddy. Hamilton played over the Echo and the kids had good attitudes. 

My mom arrived shortly before lunch, with strawberries in hand. She cut them up and we had a delicious lunch of leftover chicken noodle soup and fresh buns alongside. Meanwhile, as the kids ate, two more meals walked through my front door. 

As lunch wrapped up, kids were put down for naps. Poor Wavy is struggling a little extra with the lack of normal, and we had a GOOD slumpy dead weight kind of snuggle before her nap. I feel so disconnected in some ways, but I’m trying to help the kids still have some continuity. Its a real challenge. 

As the younger ones were tucked in, a bath was run for me, bubbles poured, candles lit, and the big kids are now on a walk so I can fully rest. 

And rest I will do. Excuse me, please. My bath is waiting. 

Must. Cope. 

Thank you for giving me grace on yesterday’s lacking blog. A good cry is both cleansing and exhausting. I’m still completely beside myself from yesterdays exhaustion, with some fresh added on top.

But, let’s begin.

Yesterday was actually a good day. I was able to spend an hour with Brady, just hanging out, before I was able to attend his first physical therapy session with him at City Hospital. It was very interesting to see a full hour assessment, what he could do, what he couldn’t quite do, and what where they wanted to start. Lots and lots of mobility and sensitivity tests. It was interesting for all of us to see Brady tryyy to make things happen, and while they wouldn’t all be successful, it was clear a lot of the right muscles were waking up. They anticipated only real tests, maybe some sits or stands, but ended up in the gym, on exercise machines, walking between the parallel bars again. I’d have taken video but I was there too, closely following behind with his chair, just in case. Brady was able to do a few controlled squats even before sitting down fully in his chair. HUGE success. He was red and sweaty and happy. One of the therapists kept asking him if he’d had enough, and I could see the twinkle in her eye when she said she didn’t think he would tell her. She might be right.

Thankfully, the day ended with Brady having some good sore happily worked muscles, and I’m happy to report he isn’t sore today at all! So he didn’t even overdo it! Woot!

At the end of the afternoon, I learned that someone had graciously purchased us a month long parking pass. That saves me a LOT of dollars! Thank you, friend.

I came home, ate good food with my family, dropped off by a friend who took my laundry along with her, and then I proceeded to have a big ugly gigantic cry in my bathtub. A hard end to a hard day in a series of the hardest days of our lives.

***

Today, being a weekend, is a day without any therapies for Brady. We snuggled up on his bed together and snuggled, chatted about the days before and the days to come. We looked at pictures and talked about things he might need while he staying at the hospital. After about an hour, we took him out of the ward in search of vending machines and the basement cafe. Not because anyone needed anything, but just to know what his options are in terms of outings and treats, if the ones I bring him run out. It was fun to go on an adventure together, as small as it may have been.

I sat with him while he had his lunch, and then said goodbye. And then bawled all the way home. Because, routine, lol!

The times are hard, but the days themselves are good. Adrenaline pumps and pumps, and I bawl when I get home. I am SO grateful that Brady is so comfy and settled where he is. I just wish he were home with us.

Friends, I have hit a wall. I’m sorry to say, you will have to hear all about today tomorrow.

It was a good day. I have very little bad to say about it. Except the whole reality of everything that is happening. Today we were fed delicious food, our laundry was done by a friend, we were gifted a parking pass at the hospital, I came back in contact with someone I really care about from a couple of years ago, and we even hit some cool milestones with the kids. It was all around a good day.

However.

My mental, emotional, and physical energy is tapped out. I just had a BIG cry in my bathtub, panicked a little, and now I’m taking my overheated body to bed for the rest of the evening.

I’m sorry there are no amazing updates today. I will share so much more tomorrow. I promise.

This morning was very hard. Somewhat needlessly. But hard nonetheless. There is good and bad. I’ll tell you about it.

Yesterday, I scheduled to come visit Brady at 10:30. It was a very intentional plan because he had physical therapy at 10:45, and then I usually kicked around while he ate lunch. In the afternoon, he would be moved to City Hospital. Boom. Day planned! With some room for change, obviously, because we always have to leave room for that.

Around 9:30am, I was getting my stuff together to head to the hospital, giving myself lots of time to get hopelessly lost in the parkade again, when I missed a call from the hospital. I tried to call back but it wouldn’t go through. And then a voicemail popped up. It was very garbled and cut in and out, but my ears through they heard “transfer at 10:30.” So I panicked, and completely bailed. I got into the car and threw my phone in the cupholder, speaker up. I called Brady and we both kind of panicked. He let me know shortly after that it was in fact confirmed. The nurse said to him that had been the plan all along. Which was just maddening, because I had discussed this day WITH the nurses on the ward. It clearly was not in the plan all along.

I told Brady I would do my best to get there as fast as I could so I could at least walk down with them. And he told me they had specifically said no to that request. They insisted it would be best if I waited and met them at the old entrance and just said goodbye when they left with him. He pressed and asked why, but he couldn’t get more than “it’ll be best.”

Of course, I couldn’t get parking at the old entrance, so I parked in the parkade, ran through the hospital to the old entrance, and sat to wait.

And he just sat and waited in his room.

He was behind in pain meds, and they said they’d “try” and get them to him. Also, it was all SO last minute, he didn’t even have a chance to go to the bathroom first. It was all SO rushed and SO uninformed. SO frustrating.

Then he texted that he was coming!

Aaaaand then he texted that apparently no one had done any of the paperwork he needed to be transferred. So he wasn’t actually coming yet.

But then he was coming again. A friendly man was pushing his chair and they were visiting. He greeted me as he passed Brady off to the guy whose job it was to load him into the medi-van. He looked at me so warmly and asked if I was coming with, as though that would’ve been totally ok, but we had no idea. I teared up on the spot said I wasn’t, but I was just there to say goodbye to my husband. He right away stopped pushing Brady’s chair and stepped to the other side of the hall, telling us to take all the time we needed, that he was in absolutely no rush.

So I cried and hugged Brady, and told him we all missed him terribly. I gave him a kiss, and then it was time to go.

I sputtered all the way back to the main area of the hospital, and drowned my sorrows in the same coffee I’ve been drinking every day since he was admitted. The Americano Nuevo. Give it a try, and think of Brady. Its delicious. Not just an average cup of coffee, but not too too indulgent, either. A perfect happy medium for a VERY tired heart.

I waited in the parking lot for a little while, to gather my composure, and also to wait to hear that Brady was settled at the next place. If there was ANY chance I could be with him, I wanted to be in the city.

It wasn’t long before he texted that he had arrived, and they weren’t ready for him. They were rushing to clean a room and get things organized. I was SO angry at that point. Because WHY the stupid rush, with NO information, NO wiggle room, and then they weren’t even ready?! I was livid.

I bawled the entire way home. I was SO upset. I knew Brady being at City Hospital was the right move, but the how of the transport just sucked so bad. And now, in case I haven’t been clear about it before, this means Brady isn’t home for weeks and weeks. Its the right choice, but its definitely not an easy one. Its the only one.

Brady texted me these pictures.

His own room, and his own bathroom, with a window overlooking the river.

Today alone, he has FINALLY had his IV ports taken out (don’t even get me started) and has met the bulk of his rehab team. He and I both are loaded down with information and are anticipating the future. Brady is motivated and determined, as he always is.

I cried a lot today. I’m so happy Brady is where he is. I have confidence in that decision. But the transfer could’ve been so much smoother, and the unnecessary chaos and disorder of it all did a real number on my heart and body. The end result is good, so I will work to come down from the mess of the morning.

Therapies begin tomorrow, and I’m welcome to join! I will absolutely be there!

So. It has been a GIANT week. Thats a big duh.

At this exact time last week, he was still under the knife, having his big fat tumour cut off of his spinal cord, under multiple microscopes, with a team of neurosurgeons and neurologists standing by.

And now we’re here.

Brady is 100% himself.

My plan is always to visit him for 11:00 am, but I could only see him at noon today. However, mid morning, he texted me and said he had physical therapy at 10:45. I left the house within minutes, but knew I’d at least be late.

There’s a pretty long story here about the parking lot being fuller than ever, and having to navigate other levels and getting super lost, taking forever, and then getting hopelessly lost on the ground level of the hospital, trying to find the PT gym. Finally I stuck my head into an Occupational Therapy office and asked for help. They asked if I was a patient and I said my husband was. She lovingly took my arm and led me through the offices and got me there.

I entered the gym just as Brady sat down.

From walking!!!

I am completely devastated I missed it but SO AMPED that it happened!!!!!

First, Brady did some “walking” on a sit stand machine. So, picture handles that move like an elliptical, but he’s sitting, and he’s stepping kind of out in front of himself. Does that make sense? He was on that for a stretch, his feet strapped in, and he was able to stop using his arms and his legs kept going!!! He figured he used it for maybe ten minutes. That is AMAZING!!

Then they brought him back to the parallel bars, and stood him up. He and his PT both noticed that he was trusting his legs a little more. So they decided to take steps. I wish I had a picture, but as I mentioned, I didn’t have the pleasure of being there. He walked the entire length of the parallel bars, and then BACK the other way, someone in front of him, and someone behind with his chair, ready to catch him. When I arrived, he was red and sweaty, but smiling!

I was thrilled to get there with any appointment left at all, and his PT celebrated when she saw me! “You made it!!” I did!

They right away took him over to a cardio type thing for him to strengthen his arms and core, and his PT actually pulled a chair up for me and crossed the gym to make some notes on her own. It was really really lovely. Brady concentrated on keeping a straight back, and rocked his exercise while chatting with me. I got to wheel him back to his room on my own. It felt oddly ok. Something we could get used to pretty simply.

However, I brought him back to his room, and then had to leave because it wasn’t my visiting slot yet. Merp. He got out of his chair and into his bed completely independently!! Thats HUGE!

I enjoyed a walk to and from and to and from the Dube Centre, and then it was time to see him!

Thank you, loving friends, for the treats.

It was a really nice visit, but my accomplished husband was so tired, so I called it early.

Lots of change afoot. Thank you for all the amazing encouragement on yesterdays post on Brady’s progress! It was thrilled to read all of your comments and felt SO cared for. Please keep the prayers flowing for our family.

Today was a very full day for Brady.

I was booked in to visit Brady around 11:00am this morning.

Before I got there, someone came to discuss disability benefits and such with him, which is a huge relief, because we have next to no idea where to start. She left her card and said she’d get some forms and help together for him. Yay!

When she left, Brady went to hit the bathroom. For the first time, he was able to get out of his leg compression cuffs, manoeuvre to the side of the bed, and hang his legs off the side of the bed in preparation for the lift. It is victorious that he could move his body that way! And balance enough to take a picture! (Balance is a big deal right now.)

When I arrived, he was nowhere to be found. Turns out they opted to clean him up a bit first and redo his dressing. If anyone wants to see his incision, I’d love to share the picture! I just don’t want to make anyone squirm so I won’t put it on here. Yet 😉 His incision is both HUGE and SO GOOD!!! Its clean, straight, and healing beautifully! Its going to be an epic scar to show off down the road.

While Brady was away, two official looking guys came looking for him. They were from City Hospital’s rehabilitation program, and they wanted to assess him and talk about the plan – to move him to City as an inpatient. After the general discussion was done, they wanted to assess his strength. They asked a lot of him right off the hop, and guys, he took that challenge!! The rehab worker, and the doctor with him both agreed there is a LOT of work to do, but a LOT of strength to work with! They are optimistic and eager to get him into their program!

Once they left, Brady ate some lunch and we had some nice quiet time, just chatting. His physical therapy appointment had been scheduled at 11:30, but had been bumped to after lunch. I didn’t want to stick around too long, since I’m only technically supposed to be there one hour per day. Thankfully, about five minutes before I was going to call it for the day, a transport person arrived to take Brady down to the gym, and she happily and willingly allowed me along.

Physical therapy was smoother than ANY of us anticipated. Their absolute first move was to get him to the parallel bars and see if he could stand.

And he did.

They practices stands. They did a couple at the parallel bars, having him shift his feet and legs in different directions while he stood. Then they took him over to a mattress that lifted up and down like a hospital bed, and taught him how to get in and out of a wheelchair, onto his bed. Back and forth. Order of operations. Wheel brakes, seat belt, foot rests, feet on the ground, and then heave over. Absolutely no one expected SUCH progress on his first day! He and his PT sat side by side and shimmied their butts down the mattress, and then back again, focusing on using some leg strength, and not just his arms. Praise the Lord for those strong arms, though!

I liked his therapy. I like that they pushed him, and he liked it, too. They wouldn’t straighten his legs, they’d point it out and ask him to. They would brace him and hold him up, but they let him struggle a little and be unsteady. They encouraged him, and then chatted for about a minute between stands before going again.

It was CRAZY to see him try and piece together what he needed. Brady can feel next to nothing in his legs, but he still has strength. When he can SEE his legs, he can make them do things that otherwise, he cannot, when he can’t see them. If he can look at his legs, he can follow every direction they give him. If he can’t look at them, he is FAR less sturdy. Its such an interesting thing to observe!

My favorite part was when they asked him if he was done or should them do one more. He opted for one more. And then again. One more. Because he is still Brady, and that man PUSHES!!!

His final stand, when he was the most fatigued, was the strongest, with the most controlled sit afterwards. No slips.

He was done his appointment early. I wheeled him back to his room, and he got into his bed from the wheelchair. No more lift. Even though sometimes, he’s going to really want it. They’re pushing him, and he is all for it. I’m sure his rehabilitation team at City Hospital will be excited about his enthusiasm and determination!

Goodness, Brady, I am SO proud of you!!!