The Daily Hailey

Yesterday felt pretty calm in terms of expectations. We had one commitment. A meeting with a social worker first thing in the morning. I almost slept through it, but I made it in time and she was super gracious and just laughed it off with me, saying she understands how lake life goes. The day ended with a visit from our accessibility guy/contractor bathroom guy/really lovely friend. He came to scope a leaky situation we mentioned to him only a couple of hours before. He brought one of his kids and we had SUCH a nice visit. Goodness we have great people around every corner!!

Today has felt fuller. I didn’t sleep well, so getting up was extra hard, but of course I still did it, lol! As you do. We had arranged for someone to come do Brady’s toenails this morning, and we were SO relieved that she was able to come early! We’ve encountered this particular person a handful of times and we really get along well 🙂 So she hung out with us while the kids finished up their breakfast, and got Brady’s feet all fixed up! Very quickly after she finished up and left, we loaded into the van and headed in to Brady’s next appointments. We waited for a while at City Hospital before being called back for his scope. Brady had a cystoscopy (think catheter scope) and got some botox in his bladder. This should help his overactive bladder calm its tits a little bit and hopefully improve the quality of his life. The whole thing took a little while longer than normal because he was feeling very weak today and had to be transferred with the help of lifts and extra hands. But WOW were the nurses all SO nice! Everyone was so warm and kind, as well as goofy at the right times while maintain incredible professionalism. Just, wow. SUCH great staff in that department.

Tomorrow there is only one appointment but its first thing. Brady is getting the staples taken out!! We were able to get in with our family doctor and a resident she is working with. I am so grateful for our doctor, and the privilege it is to not have to go to a walk-in for everything. We are SO well cared for.

I believe Thursday will be more restful, but we will use that day for packing and prepping for camp! And Friday, we’ll be on the go back to the lake! Gotta pick up the camp kids and deliver a couple more for the next week!

I wish I could show you the pictures for todays story but bear with me. You’ll have to take my word for it that it was really, really funny.

Taking turns is hard, right? Especially as a toddler. So, Spoons is 3, and really doesn’t care for the concept. Much more excited about the whole “mine” thing. Not abnormal. And not enjoyable to be around.

At one point today, Rowan brought his beanbag chair out to the living room, as well as a super cozy fuzzy pillow he loves, and left it there for the babes to enjoy. After a while he returned, and no one was sitting in/on his cozy setup, so he tucked in.

And Spoons lost it, tucked in on the couch, and wailed mournfully over and over “TURN BEEEEEAN!!!!”

To be clear, Spoons had many turn beans 😂 but it seemed unbearable to watch Rowan enjoy his own turn on his own bean.

We giggled, because Spoons was completely fine, and learning is hard sometimes and thats ok. After a while, they opted to share a turn bean and all was right with the world again.

But goodness 🤣 TURN BEEEEEAN!!!

Today we made our first camp drop offs!! Wavy and Solly will spend this week at camp, and they were excited!!!

I dropped Wavy off first. She picked a top bunk. She didn’t go with anyone this summer, as in she didn’t have a specific cabin mate chosen, but she landed in a cabin with a friend from the camp that she knew before, as a well as a local friend from school and ballet! Win!

I went to tuck Solly in next. He had chosen the bunk above the counsellor, and his first order of business was finding some masking tape and labelling it as his 🤣 True Solly styles. He also didn’t have a specific cabin mate to request this year since Rowan and Jaxon are going with an older age group this summer, but we did meet up with one of Brady’s friends who was tucking his kid into the same cabin! Hopefully a friendship in the making there!

Another highlight for me today was an unexpected quiet time. For a brief moment in time, I had no one at my campsite. Now I LOVE having a crew of happy kids in my campsite, do NOT get me wrong!!! NO backsies there! I LOVE our group!!! 💜 But there was a half hour or so where I had dropped off Wavy and Solly, and Laela was out on a walk with Avery. Babies were napping, as was Brady. It was just me. I crocheted and just breathed. The fire fizzled out, and I didn’t beef it back up because I knew we were leaving soon. It was a brief time of low pressure, and I liked it.

Getting home was a bit of a task today. I wish it had been smoother than it was, but alas, it was not, and we still made it. It was hard, but not too hard. So we will absolutely do it again!

We got home, unpacked, diapered, tucked, set up, and tucked some more. And then there was a very short lived but aggressive storm. It got Hailey out there and everything!

But actually, there was hail.

Now that the work is all done, including the blog, I’m ready for supper. Brady, too. I am anticipating my own bed tonight 🙂 With fewer children in my bedroom and less sand in my bed.

Always grateful, though. Never not. Praise the Lord!

If we could have more storms like last nights, that would work for me!! Not a tornado per se, but some good dark clouds and some rolling thunder wouldn’t hurt!! 

😍🌪️🌩️

We made it to camp. Yes, even the one of us who had brain surgery ten days ago. The most handsome man 🙌 

We had such a beautifully warm welcome from our Dahlsjos, as well as another family or two who were so thrilled to see Brady 💜 It just feels like home here. 

As the storm works to move in back at our actual home, we spent our day here in the overcast weather, around the fire, just being restful. I had a PRECIOUS snuggle turned nap with our dearest Lemon Drop. You can’t know how much that meant to me. LD hasn’t slept on me in a long time, and it was great for the heart. 💜 

Off to bed now. Brady napped all evening so now he has to hang out with me 🤣 

My youngest girly is SO much older all of a sudden!! How come eight feels SO much older than seven?!

This girl is our free spirit. She is playful and full of light. She comes back from disappointment quickly and is eager to make new friends, try new things, and include everyone in her experiences!

She was front row in her ballet performance this year, and she absolutely earned that spot 💜 She also had her first round of piano this year, and she did beautifully. She is unafraid of challenges and she shows up for just about everything with full confidence.

She bickers with her siblings, being that she is the youngest and the most playful, and possibly the least responsible 🤣 but when they play with her, that fun is unmatched 😍 She and Rowan specifically can have a BLAST together! Can’t believe he’s not here to celebrate with her today!

Waverly. Wavy. Wave. Fifi. Call her what you will, and she’ll come running. Faster than a person her age and size should. Without a pause in her smile. Eager to see what you’re calling her for. Whether its to talk, or for help with something, or anything in between, she is in.

Wavy Vi, you rock all of our socks off. And frankly, they’re probably somewhere balled up with your socks in the garage 🤣 I remember your birth so vividly, I can hardly fathom that it was EIGHT years ago!! You brighten our family so beautifully 💜 We wouldn’t be us if not for you.

I love you, Wavy. I hope you have the happiest of birthdays! We’ll celebrate good and proper this weekend 😘🥳

Well, all! Kinsmen Telemiracle APPROVED Bradys application for a passenger lift for the bus!!! This is HUGE!!!! 🥳

Thus begins our chase to get this thing in and installed as soon as humanly possible!! Very few places are allowed to do these accessibility modifications, therefore it tends to take longer than anyone would prefer, hence the chase.

We will be having this lift installed on the passenger side of our bus, and HOPEFULLY can get it installed before radiation starts up in a few weeks. I’d love if we had a lift to get him into the van every day rather than just my own brute strength 🤣

Cmon, Motion 💪 Make it happen, Cap’n!

I don’t have a picture to share of Solly in his new glasses from yesterday. The vast majority of our pictures contain people who can’t be on social media. Merp. 💜 I would SO love to share them with you all.

But I’ll show you these ones! Not Solly’s new specs, but still, specs all around! Not theirs, but everyone is wearing someones glasses!

Dekker and Laela swapped! Laela snorted and said “You look BAD, Dekker!” 🤣 He was too nice to roast her back.

Rowan and Solly also swapped. They were both greatly put off by each others prescription being SO different from their own! Solly looks like a business man, lol!

Aaaaand Wavy wanted in and had no one to trade with, so naturally…

I swear, this girl will be the CUTEST grandmother that ever lives. Can’t you already see it?? 👵🏻

Super grateful for our excellent health coverage that makes it possible for my kids to pick whatever glasses they want any time they need them 💜

Oh oh oh! Here is Solly in his new ones! Thanks, mom!

Exactly what he wanted. Black rectangles.

Mr. Fredrickson style.

Right before Brady’s surgery, I had a friend touch base, just to see how I was feeling about the day, what my plan was to keep busy, did I have anyone planning to join me at the hospital, etc. I told her I had no one coming along but that I felt really content with that, actually, and it left me free to walk or sit or text or scroll or cry in the bathroom or do anything I wanted to do. I told her that during Brady’s last surgery, I got a little bit twitchy, so I went to Michael’s and bought yarn 😅 She proceeded to send me an e-transfer and told me to “get the good stuff.”

And I did 💜 Not that day, but for the next day when I was lurking at the hospital, visiting Brady on and off in observation. I chose some yarn that I have pined after for a good while now but that I consistently left behind because I was trying to be an adult and not buy yarn that I didn’t have an immediate project in mind for. But this was my open door. Which was perfect, as this particular color was on its way out.

I worked with it here and there at the hospital, in between naps, waiting for discharge.

And since Brady has been home, I’ve continued working and crocheting something pretty. I’m SO happy with this yarn, and I’m SO grateful I was given the chance to buy some!

Laela likes it too 😍 Melted my heart!

THAT’s the color!! ☝️😍

I felt super seen with this gift 💖 It is a VERY Hailey thought, and I really appreciate the generosity and thoughtfulness. To my friend who doesn’t follow this blog (which is SO fine) THANK YOU for understanding how I cope best. How I rest most effectively. And how I occupy idle time the healthiest.

EVERYONE should take a swing at fibre arts! No joke.

Keep your hands busy.
Learn a new skill.
Don’t dwell.
Make something beautiful.

New yarn is good for the soul.

This question seems more important to answer than going back and hashing out every detail of his hospital stay. We’ll get there. But let’s talk about the present.

How is Brady?

He’s managing pretty well. Its a very different recovery than the last one. It has only been a couple of days, but these are the things I can tell you to give you an easy picture.

After the last brain surgery, most of the surgical area was numb for a long time, which meant less pain. This time around, Brady has more pain. His incision site isn’t too bad anymore. The area where they screw his head in place during surgery was very sore but its begun to lift as well. But his brain itself aches quite a bit. This surgery was deeper and larger than the last one. His tumour was in the same place, but it had extended further back. Therefore the surgeon extended the incision further back and did more work back there. So, unlike last time, pain management is a bigger part of this recovery.

With Bradys higher level of pain comes a higher dose of pain medication. Which makes total sense. We are nicely on top of it and his pain is well managed.

With his higher dose of pain medication comes more fatigue. Which is great because sleep is essential to healing. But its also challenging because he has less mobility than he did during his past surgery. He is very tired which doesn’t make moving around easy. So for the time being, he’s needing more help with basic life things, and thats ok with me 💜 If I wasn’t willing to help him with basic day things, he’d still be at the hospital.

So.
Pain = meds.
Meds = drowsy.
Drowsy = extra needs.
Makes sense, right?

Another challenge that we weren’t expecting (though wasn’t altogether surprising) was that Brady had some stroke activity show up on his MRI from Friday morning. From that, Brady’s left side is giving him some trouble. Thankfully, we have already seen improvement, but it will likely be a bit of a road to recovery. His left hand is very delayed to respond. He has lots of weakness in his left arm. Therefore his balance is quite off. Wheeling his chair is hard. Sitting up for any length of time is hard. The left side is just unreliable. His speech is a little garbled, but some of that is also from fatigue. Dry mouth. Pain from intubation. All that good stuff.

This all being said! His speech is better than it was a couple of days ago, and he is having more success using his left hand. He can unlock the left brake on his wheelchair 🙂 That counts as a win!

If you are trying to text him, thats lovely! I’m going to advocate for him a little bit, though, and just let everyone know that texting back is hard. Surgery did not improve Brady’s vision. He has lost everything left of centre in his right eye, and with that, his eyes are having to learn how to refocus. He still works very hard to focus on things like his phone. Also, his dexterity isn’t great. His left hand is unhelpful and his right hand is very shaky. So you can text him and he can read it! But he may not text back. If he texts back, it might be short. Or garbled. Its not personal. Just go with it 😅 We’re just working with what we’ve got.

Brady wanted to get up and see everyone this morning 💜 Even though it took a lot out of him, he knew it would be good for the kids, and for me, and for himself to be up and around a little bit. Smell the rain. Reconnect a bit. Stretch those muscles for those minutes he could. It meant a lot to all of us.

If you have a question, please ask me! I know I’m awful for responding to comments, especially now 😬 but if you want to know something, you can ask and I’ll very likely answer it in another blog! There’s just SO much to talk about but I doubt it’ll all make it on here. So don’t hesitate to ask 💜

We all remain SO grateful to have Brady home with us. Thank you LORD!!!

💜

A quick aside. This weekend is the weekend when Kinsmen meets to discuss all of their applications. We applied for something quite expensive but that is very much a need. Please say a prayer that the hearts of the board members of Kinsmen Telemiracle would be moved to help Brady and our family.