Well, friends, I know so many of you are rooting for us in terms of Brady’s health, treatment, and search for answers. It means more than you know to know I could call for help and how many of you would happily and willingly come running. Just knowing that kind of help is available lifts a large weight from my shoulders, so thank you, friends. This is a very uncertain road we’re walking, and its nice to have so many of you standing at the sidelines, as well as many of you, walking along with us. 

I want to keep everyone in the loop, but I admit I’ve sat on this information for a few days. We got an MRI date for Brady. Its next week. We found out towards the end of last week. Brady called every avenue and pressed, but no one could move the date up. He has been “urgent” for what feels like forever, but I suppose there are only so many minutes in a day. So we had to wait. We had no choice. At least he was FINALLY on the books. 

I have remained over-prepared in terms of home stuff. Pre-writing some blogs. Meal planning. Preparing lunches for the week. Brady’s emergency bag is packed, just in case. Brady has continued working at his job, as long as he possibly can, just in case suddenly he has to be off again. Light duty work, anyway. And I spend the days working hard not to overthink. I’ve been crocheting a lot. Listening to a lot of music. Keeping busy. I cannot let my brain be idle, because it goes straight to anxiety, but I cannot just go and go and go either, because I desperately need rest. We all do. 

This morning, I asked Brady to call the MRI clinic. While they don’t have a cancellation list, I know people HAVE to cancel a lot more these days, as you can’t go anywhere with any kind of sick symptom these days. So he called from work. And called me back minutes later. 

Brady has an MRI. Tomorrow night. 

Thank you, Lord, for answering these prayers. I feel so emotional about all of this. Still horrifically uncertain, but ready for whatever is going to come our way now. As ready as I can be, anyway. 

One more day. 

As we approach two months of Rowan on Melatonin, I feel vastly unprepared to ween him off anytime soon. That has been the plan along the way, but there have been a few snags, and I do not feel ready to sacrifice my evenings back to the way they were just yet.

Rowan sleep walks a LOT. I know its not something to be worried about specifically. He is completely safe when he sleep walks. He always seeks Brady and I out. He doesn’t get into any kind of scary mischief. That being said, the full moon gave us a run for our money!

The night before the full moon, Rowan was awake for HOURS. And he was TICKED. He has some pretty hefty sleep anxiety, like his mom. He finally fell asleep, I’d say, around 10:00pm? He was NOT impressed. Turns out the moon stuff renders Melatonin ineffective, haha! Thanks to that night’s exhaustion, the night of the actual full moon was without issue. But the next night was SO BAD.

Rowan came up to our room in the middle of the night, saying he was afraid. This happens sometimes. I could tell he was actually awake, not sleep walking. When he does this, I give him a hug and pray for him, and he completely willingly heads back down to his room. So, that happened again. I didn’t even check the time. It was a quick, easy interaction. But then he surfaced again, at around 3:45am. He said he was awake again, or couldn’t fall back to sleep. As per usual, I told him I understood, and I encouraged him to go to the bathroom, grab a drink, and try again. He huffed at me. I reminded him that getting up multiple times would wake him further, and that he would be best off to do the things I had said, and then snuggle up under his nice heavy blanket. He huffed and puffed and sighed and tried to escalate me, but I didn’t bite.

And he did NOT like that.

He STORMED out of our room, stomping and raising his voice, working up BIG. Brady beat me out of bed and caught up to him before he woke the entire houseful. Thus began the fifteen minute negotiation with an irrational overtired five year old. Brady did manage to talk him down and get him back to bed, but he and I were SO awake afterwards. It was a pretty sucky scenario, and the whole household was overtired and irritable the next day.

This makes clear to me that, while the Melatonin is helping him fall asleep with so much more ease, and is helping his brain get more rest, he is still struggling.

Bottom line. Its been a tough week. The Melatonin is buying us a few hours of peace in the evenings, and I KNOW Rowan is doing immensely better than he was a few months ago. But Melatonin isn’t cutting it. Neither is Magnesium.

I had someone reach out to me very vulnerably this last week and share some information with me about her experience with one of her children. It was a wealth of information, and I’m VERY excited to try a couple of other things paired with Rowan’s Melatonin. Today, in fact, my beautiful mom offered to do a grocery run for us, and she will be on the hunt for these things for us. Not only is she saving us the struggle of trying to find a window when I can get in to grocery shop on my own to save Brady’s legs and back, but she is doing some hunting and in-store research for us. Mom, you’re saving our butts this afternoon. Thank you.

On top of everything else going on in our lives, we need to keep our evenings as a time of breathing, peace, and sanity. So, for now, the Melatonin stays, and hopefully we can help lift Rowan’s anxiety in some other ways.

Thank you to those of you who follow and care about Rowan so much. He is SUCH an important part of us. We just want him well. We don’t want him to have to work so hard to get through his day.

Can we all agree that the not knowing is sometimes just the worst part of stuff? The waiting game is SO hard, and not knowing while waiting is torture. 

I feel the deep need to prepare, and I don’t know for what. 

I don’t want to get ahead of myself, but I don’t want to be caught off guard, either.

I feel an itch to be “ready.” 

I keep my devices charged ALL the time.
I have a more desperate feeling towards organization.
I’m pre-writing blogs.
I’m meal planning.
I’m keeping the house chores more caught up than usual.
I’m speculating about who to ask to be on call for us in case something happens and we have to leave the house fast.
My to-do lists are long.
My brain hurts.
My heart is so tired. 
It is SO hard not knowing what is to come!

Here is what we do know. 

We know Bradys condition is deteriorating every day. 
We know his numbness is travelling up onto his abdomen and his right hand is weakening.
He know that there are only a few more little things we have to spot before his nerve damage will be permanent. 
We know he went from a “slipped disc” to needing a neurologist in a matter of one hour.
We know that he urgently needs imaging. 

We know Brady now has amazing professionals advocating for him, going down every avenue to get him cared for properly. 

We know I’m having to actively check my anger at the door, where I would love to go beat down the doors of the “professionals” who neglected my husband for months. That fury will not do anyone any favours. Not myself, either. But MAN it feels justified. 

And we know that God cares for us.
And that He knows how this whole mess will turn out.
And that He hasn’t forgotten us. 

I don’t love cooking. Yet there is a very large part of me that wants to be amazing in the kitchen, cooking and baking delicious things for my family. During quarantine last year, I learned more and gained confidence. It was actually kind of an awesome year in that respect. While I still don’t get too excited to make supper, and while I don’t make extravagant things often/ever, I don’t dream cooking or preparing food the way I used to! Win for me, and win for the people I feed!! Hahaha!

I mentioned yesterday that I was determined to make the day great, and part of that was supper and a movie after the kids went to bed. I prepped food on and off throughout the day, and I have to show you guys how it came together! 

Firstly, I made a knock off of Outback’s Alice Spring Chicken. Its a very indulgent entree, with chicken breasts slathered in homemade honey mustard, with bacon, mushrooms, and cheese. 

I can’t say I’ve had the original recipe, but I cannot even fathom it being better than this dish! Even Brady, who is anti-mushrooms, loves it! This time around specifically, I assured him I was happy to accommodate him and leave the mushrooms off of his pieces, but he insisted he’d have them, and enjoy them. 

A couple of tricks, friends. Fry bacon in advance, not too crispy. Then sauté the chicken with some of the leftover bacon grease. I slice the chicken breasts in half the super skinny way and it all goes SO much smoother. I never used to precook everything but it is SO much easier to give everything a little fry first. Not the mushrooms, though. They cook great in the baking process. Lastly, I double the sauce part of the recipe because its a great sauce for other things we’ll talk about shortly. 

Then I made broccoli salad. This is a favourite for everyone over here. To the point where the kids were ticked that there wasn’t any for them this time, hahaha!!

I had a bag of broccoli from Costco that was half frozen, and I was then neglected it in my fridge because it made me feel bummed, but I decided to grow up and not waste the entire bag. I chopped it up and added my homemade dressing to it. Then I added the yummies. In this case, I added craisins and bacon bits. We recently bought the far grosser brand of bacon bits and they were pure fat. Like, couldn’t even break down when you chewed them. So because todays food wasn’t enough steps, I fried the bacon bits. They are WAY better now! For the record, I always add sunflower seeds to this salad as well, but I’m learning its only me who likes them, so I opted not to this time. 

The last piece of the meal was potatoes! I decided on wedges this time around, for ease, and also because the kids don’t love them so we don’t have them very often. I simply tossed the wedges in onion salt, cayenne, salt and pepper, and a big ole scoop of minced garlic. I didn’t add oil, because the last time I roasted diced potatoes, I left the oil out and they tasted SO much better! It was almost like the oil made all the spices and garlic roll right off the potatoes. Does that make sense?? Anyway, there isn’t really a worst case scenario in this case. Potato wedges dunked in honey mustard is pretty close to ideal no matter the level of soft or crisp. 

I didn’t take an after picture because, in the moment, I was SO discouraged. The potato wedges looked gross and overdone and just so so bad. But I will confirm they actually turned out pretty perfectly.

All in all, folks, the meal was DELICIOUS!!! 

It was a decent amount of prep and fuss but my goodness, it was so worth the effort! I’m not sure I’m ready to put this level of effort into food only to have the kids turn around and hate it, but the more I cook, the more I feel capable of pushing through those insecurities and trying it out! I find they are SO much happier to eat food they’ve helped make 😉 So there’s also that. 

Its been a really difficult stretch over here. Why is waiting SO difficult?? Ugh. Its very hard to be upbeat when I feel inner struggle, yet I don’t want to just pout and sulk, either. Its a pretty maddening inner battle, to be honest. My tolerance is LOW, and my nerves are SHOT. Yet, for how long, we don’t even know, because.
We.
Are.
Just.
Waiting.

I’m really trying. I have hope for a good day today. I will work for a better day than usual today. The kids are home today, but so is Brady. That already helps a lot, to have someone else to parent with me.

The dishes are already done, and laundry does not need to be done today. Woot! The kids are going to have breakfast for supper tonight, so thats easy and already planned. And then the rest of us will have a delicious honey mustard chicken with potato wedges after they go to bed, and we’ll watch Hamilton. The evening already feels like a reward. I can’t wait!

But first, we get through the day, prayerfully, hoping for it to be successful.

Aaaaand as I write this out, the fighting ensues! Woohoo! 🙃 Wish me luck!

The other day, I was getting Rowan up for the day, and as is my usual “system,” I lovingly attacked/jumped on him while he was still in bed. This particular morning, he was laying on his tummy, so I effectively lay on his back and smushed him into his bed good and proper. He laughed in a big way, and didn’t try to evade me. I was his BIG weighted blanket for a minute there. 

And then, he became very still. 

“Is something wrong with your body, mommy?” he asked.

I had a little laugh on the inside, because what a question, hahaha! Body shame, much?? Hahaha! I replied that maybe my ribs were poking him a little bit, and I lifted up a little, so as not to make him uncomfortable. He assured me he wasn’t hurt or upset, but that something seemed wrong. He was curious. 

So I lowered myself back onto him, so he could feel the difference. 

He remained so still. 

“Something is moving inside your body, mommy.”

What in the world was he talking about?? We both stayed very still…

“Its very small. Just a little poking. On my bum.”

My heartbeat. He could feel my heartbeat. 

On his bum.

I laughed pretty hard at this. He was very nonchalant about it, but I thought it was terribly funny. Maybe you had to be there. But seriously, it was a good giggle for me. 

How perceptive is this kid that he noticed my heartbeat through all of my clothes and his clothes and weighted blanket??? He’s bananas. 

Waiting…

W is for woah – the sound Brady makes when he loses his balance.

A is for AAAHHH – the sound Brady makes when he actually falls all the way down.

I is for injured, a confident and simple description of Bradys spine. 

T is for tingly, the feeling that Brady occasionally gets in his toes, that brings fleeting hope before it bails into oblivion.

I is for insignificant – the way our original physiotherapist made Brady feel.

N is for numb, which is the way his left side feels, up his leg, all the way up his abdomen, and into his hand. Also neurology. Also nervous. 

G is for grrrrr – the sound I make when I go over all of the injustice in this whole mess. Bonus G is for God, because without Him, there is absolutely no way Brady or I would still be standing, however crooked.

Dark humor has shown its face these last few months, but at least I still know where I stand with my God. 

Brady met his new physio last week. My goodness, where has been BEEN this whole time?!?! As you probably remember, Brady’s previous physiotherapist was out of his depth with Brady, and rather than referring him out, he kind of strung him along and experimented on him. It was total crap. We paid SO MUCH for ZERO payoff, and succeeded only in prolonging this whole ridiculous endeavour. Finally, I emailed my physio, who is a wealth of knowledge. She only treats women, but she did point me in a direction towards someone she thought could advise Brady. 

And she was right. 

Almost immediately, she was invested. She also had a LOT of knowledge and understanding of his body and what it was going through. She hemmed and hawed over some of the theories we had discussed previously. She discussed his symptoms and went retested every single sensitivity test Brady has had at every single other office since this all began, to rule out worse things. Except one, she did slightly differently. I’ll try to describe it the best way I can. 

If I understand correctly, the doctor/physio would run their finger up the outer edge of Brady’s foot, towards his pinky toe. Towards the ball of his foot, they would swerve in and trace under his toes, all the way off the edge, under his big toe. His foot would remain the same. That was fine. The new physio, however, did it slightly differently, tracing up the side, and then bringing it up between his pinky toe and the one beside it, instead of going across. When she did this, his toes involuntarily curled up. THAT is a huge cause for concern. HUGE. That is the absolutely opposite reflex a person should have. Very very concerning. She assessed everything else with similar findings and results as everyone else. 

She talked about different conditions that feel likely to her. A big one is cervical myelopathy, which is the compression of the spine up towards the top, in the neck area. Its not all too uncommon. From my understanding (suuuuuper not a doctor over here) its from some kind of trauma (ie: a herniated disc) setting his spine out of balance, putting pressure on certain vertebrae, cause disturbance in the nerves. This makes reasonable sense to everyone involved, and as you may expect, IT REQUIRES IMAGING TO CONFIRM!!! *steam blows from ears* She believes strongly that Brady urgently needs an MRI, so praise the Lord, we have TWO well known medical professionals on our side, throwing their weight around the best way they know how to get Brady some imaging. But it seems there are steps that absolutely HAVE to come first. 

Hence, Brady’s phone appointment with his neurologist. It was scheduled for yesterday afternoon, but yesterday morning, Brady received a phone call from the doctors office saying the neurologist reviewed his files and wanted to see him in person. Even better!!! 

A third theory! Lol! The neurologist doesn’t think he has cervical myelopathy or brown-sequard. She thinks Brady most likely has a lesion or mass in his spinal column, pressing on the cord. She does not suspect a tumour, though. What everyone can agree on is Brady’s dire need for an MRI. She sent a second request on his behalf, and told him she is POSITIVE he’ll have one this week. She informed Brady who he’d see if he ended up needing surgery, and if not, he’ll go back to her. I don’t know what for. I don’t really know what’s to come. None of us do. 

So we continue to wait… first on God, then on the medical system. 

The road to Rowan continues! Thank you, my loyal friends, who follow along and care for my family the way you do. I had SUCH fear about sharing these struggles publicly. I didn’t want to be judged. I didn’t want Rowan to be judged. I didn’t want too many opinions. I didn’t want to hear “thats normal, he’s a kid” when I strongly believe his behaviour is not normal. I was very, very nervous. And you guys have aced the support thing. So, again, thank you. 

As I shared last week, Rowan is still sleeping SO much better, and he seems SO much healthier, but his attitude is slipping pretty badly. I said I was going to start looking into a magnesium supplement to help him that much more. My original plan had been to go from Melatonin to Magnesium anyway, so the process of switching was on the horizon anyway. Why not start now? 

So we did! I called around to some places around Saskatoon in search of a kids magnesium supplement. One place sent me some links, which was great, until I sent Brady to go pick up and they had none of it on their shelf. Merp. Thankfully, I was able to track down a gummy at Nutters on Broadway. Its called Natural Calm, which all on its own sounds pretty bang on. Its a yummy flavour, and beats the other options, which were powders needing to be stirred into hot water. Do most children drink hot beverages every day? Mine do not. That would be SO weird and foreign to them. A gummy makes way more sense over here, and Rowan has complied beautifully! He takes his two gummies at the same time every day, completely happily, and has been asleep every day by 7:30.

To be fair, magnesium does not hit ones system that far, so I have not observed any change in the way we’re hoping to see eventually. Things were very the same this week. He walked in his sleep ones or twice. But I’m relieved he’s so happy to take these vitamins. He knows what they’re for, and he’s SO willing to take them. That shows me how much he wants the help. 

Something I’d like to add to this post is the actual vitamins I’m giving Rowan. While not everything is good for everyone, I’ve had a couple of moms reach out to me, asking me where I got what we’re using. So, information! 

I get Rowan’s Melatonin gummies from Costco. 

They’re 2.5 mgs, and I’m under the impression that a doctor would normally prescribe 3 mgs for a child, so that feels perfect to me. And they work beautifully for Rowan. We give him his dose at 6:30, which is when the kids begin to tidy toys, brush up, and get ready for bed. By the end of devotions and prayer time, he’s yawning, and almost always, he is asleep by 7:30. Its beautiful! 

The magnesium supplement, Natural Calm, is from Nutters. 

It was expensive. About $40 for three months worth for one kid. Each gummy is about 80 mgs. The suggested dose for a child ages 4-9 is one gummy per day. 

I am NOT suggesting you use exactly what I use!! I just wanted to answer questions I’ve been asked a couple of times 🙂 We have found some relief. Life is much easier. When Rowan has a particularly difficult day, I remind myself what his bad days used to look like, and its such a significant change. I am SO relieved, because I know HE feels relieved!

Thank you for caring about Rowan the way you do. 

Trust me, guys, I have WAY more important things to talk to you about, but today, we talk about the mundane in order to try and let my brain have a rest. Though, not the most restful rest, because of the story I have to tell you…

Yesterday, dishes were being done, and the dishwasher was open while the kids were wrapping up their breakfast. A certain child took it upon themselves to leave the table and walk to the kitchen backwards, their arms full of dishes. 🙄 So as you would expect, said child naturally tripped over the open dishwasher and fell right onto it, bending the door down to the floor, breaking the brackets completely. No dishes broke. No kid broke. But the dishwasher door looked BAD. Maybe this happens to people more often. I know I’ve seen lots of pictures of kids playfully climbing into dishwashers. We just don’t let those things happen, and we REALLY want our appliances to last!

But 🤷‍♀️ accidents happen.

We looked at the door, and its bent pretty badly. We had to slide our bathroom stool under it to load it. Which is fine. Annoying, but fine. Brady started researching the brackets, and we could replace them for I think about $60. So thats an option. But its kind of hard to tell, we might have to buy two packs. At that point, we also have to consider that our dishwasher is a total piece of junk, and we fully expected to have to replace it within five-ish years of moving into this house. So is it worth trying to repair it if it really just needs replacing?

All of that being said, we do not have the extra money to even think about buying a new dishwasher.

And Brady is in no place to try and install it.

So thankfully, we tested it out, and there is no leak when its running. I guess we wait, and just be thankful we can still use it! Nothing needs to be perfect to be in our house. I’m thankful it runs, without damaging our floor.

This morning, I did some dishes, and left the dishwasher open so the kids would remember to put their breakfast dishes away rather than on the counter. I made a casual mention “Can I trust everyone to walk forwards, with their eyes open this morning?” Aforementioned child gave a small smirk, and knowingly responded with a “yes, mom.” THAT felt like a parent win! No love lost. No fear. No residual anger. Just, a lesson learned, and moving along!