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!

The last time I spoke about this subject, you were all SO encouraging and understanding. You don’t understand the clout that carries to me, and I deeply appreciate your support during a situation where we feel pretty hopeless and alone. It is truly incredible to know I could reach out and I would receive help. I know not everyone has that luxury, so for that – for you – I am grateful.

I believe the last time I shared about Brady’s health on here, we had left off around Dr. Guselle saying she wanted to bypass a consult with a specialist altogether and just get the man an MRI. There was SUCH relief having our doctor so strongly on our side, advocating for us!

I won’t lie, though. Its been a total mess since then. 

A very short recap would tell you that Brady saw a physio once in October who specialized in back stuff that may or may not require surgery. He decided that Brady had a herniated disc and just needed healing time. Fine. Thats what most people believed at that time. The physio he saw there called him again about a month later to check in. Brady said nothing had improved, but because it wasn’t worsening quickly at that time, the physio told him it was fine. Then he told him their business was closing down, thanks to covid, and he was being called away to work elsewhere. He said if anything changed for Brady, he should contact his family doctor and get a referral to the orthopaedic surgeon who worked at the same establishment. Fine. 

Except not fine.

Dr. Guselle contacted the orthopaedic surgeon regarding Brady, and his response to her was that he stood by the physiotherapists report from October, and that Brady just needed healing time. Based on this ONLY, having NEVER seen Brady himself, he completely refused to see him. Not for treatment. Not for a consult. And absolutely not for any imaging. 

Guys. Infuriating. 

Thankfully, Dr. Guselle is just as pissed as we are. 

She sent a message to Brady through her admin staff saying to book an in-house appointment with her so they could redo all of the sensitivity tests and see if there was any clear new information that she could use, basically as ammo, to get him an MRI. She said, in her own words, “I WILL get you an MRI or CT, one way or another.” I could’ve cried. The next available booking was a couple of weeks away with one of her associates, which was not ideal, but we booked it. Thankfully, her admin staff is aware of our situation, and informed Dr. Guselle how far away the spot was. So rather that February 6th with a different doctor, she herself squeezed him in just days later.

Brady saw Dr. Guselle in person on January 19th. I only wish I could’ve been part of that appointment. But, again, thanks for nothing, Covid. 

They went over everything. Brady said they literally just talked and caught up on ALL the info for a solid 40 minutes. Then there were tests. Sensitivity tests. Standing on tip toes. Standing on heels. Balance. Strength. Everything. The entire time, she would say “interesting!!!” Brady said she seemed completely perplexed for the bulk of the appointment. She said she had suspicions of some things, but nothing she had actually seen in person. He brought her aaaaall the way back to medical school! She was VERY intrigued, and VERY concerned. 

Are you ready for your lesson in medicine today? 

She talked about a disorder called Brown-Sequard Syndrome. Its defined as “a rare neurological condition characterized by a lesion in the spinal cord which results in weakness or paralysis on one side of the body and a loss of sensation on the other side.” Without saying this IS the answer, because it sounds kind of scary, there could not be a clearer description of exactly how he feels. If you remember, about four years ago, Brady had a big injury at work, when a set of stairs fell out from under him while he was holding a mitre saw, and landed chest first onto it. It REALLY hurt him, and screwed his ribs up big time. She suspected that, maybe, he had a build up of scar tissue from that fall those years ago, and it was sitting right on that nerve that causes those problems, and possibly, Brown-Sequard. 

To be VERY clear, this is VERY rare and while it doesn’t seem likely, its something we looked at, because the description sounds SO CORRECT. 

Dr. Guselle then abandoned Brady and their appointment completely (Lol!) and told him not to leave until they had a plan. She said he needed an MRI in the next day or two, and she needed to do a bunch of calling with him still there. The surgeon she needed to speak to, however, had JUST gone into a surgery, so she could not get an answer right away, and unfortunately Brady did have to leave without a concrete plan. But not before Dr. Guselle chatted with him about some other health stuff going on in our home, and covering a bunch of bases, sending some messages home to me and giving us a few requisitions. She covered it all. She is SO thorough. And she has that beautiful quality that leaves you feeling informed, yet totally reassured. Its incredible. I want to be like that. 

Brady heard back from her later that day. The neurosurgeon call had come with good and bad. 

Firstly, the surgeon did not discount the possibility of Brown-Sequard, but he doesn’t believe there is merit to his injury four years ago playing a role. 

However, he does agree that Brady’s case is urgent and requires an MRI. 

However however, he doesn’t believe its emergent. Urgent. Not emergent. 

So saying ALL of that, the MRI is not going to happen as soon as we all really want it to. But it should happen before the end of January. 

Brady went for a prelim X-ray already, to make sure there are no residual shards of metal in his eyes from his welding days, before he goes into a gigantic magnetic tube. Hopefully he’ll get the all-clear! If not, I’m not really sure what happens next, but we have to start somewhere!

There is more that this to share, but its already a long post, so I’m going to cut it here. I will share more shortly. Brady has a phone appointment booked with a very important doctor on Monday. PLEASE pray for guidance for our doctors and wisdom for us. Peace in our hearts would go a LONG way, as well.

This kid could write a book. Or I could write it about all the things he says. I really should record more than I do. As I type this, I’m already afraid that this is one of those “you had to be there” situations, but if thats the case, 🤷‍♀️ I guess you had to be there!

The other day, Solly was particularly cute.

He had been really extra friendly and agreeable with everyone. Ate his breakfast without a fight. Didn’t doddle through getting ready. Let me tie his hair up. Everything. He was so cooperative.

He was SO cute, and then he was SO happy to go to preschool, and he was SO sweet when I went to pick him up. Little sweetheart.

He ate his lunch better than usual. It was SUCH a relief to me, when I usually have to ride him to keep him on task. But he was just in way better shape than usual. When he left the table, he was just being so stinking adorable, and I finally bubbled over.

“Solly, you are just SO cute today!!! My goodness!!”

And his response was:

“😳 … and imagine if eggs were ALIVE!”

And then he was off to the bathroom, while I was folded over in the kitchen, laughing my guts out. I hear him bellow from the bathroom, “and then they could eat you with their mouths!”

Yes. He started both thoughts with “and.” His brain must just go and go!

That kid, though. He is SO funny!

I am very excited to see who he grows into over the years! I sure love you, Solly Wolly!