I won’t lie. I don’t have a ton to update you on at this point in terms of change with Rowan.
I left off last week saying I had a new direction to move in, and that I was excited about it! That remains true! While it seemed to slip my mind that I should actually share what I was excited about *slaps self in forehead* I will tell you in todays post 🙂 Better late than never!
First, a quick overview of the week for Rowan. Still lots of sleepwalking. My favourite one went like this.
Rowan came to the basement stairs and stood in the entrance. He couldn’t articulate what he wanted, and his voice is a dead giveaway when he’s sleep walking. Its a little lighter and higher. He was a little distressed, but couldn’t get past “I just cant, I just cant…” So we knew. I told him everything was ok, and I got up to take him back to bed. He asked to pee first and I said yes, that was fine. He easily turned around and started heading back up the stairs. He scrambled up the stairs and headed towards his room. We lay a stool hear his door so our vacuum, Meryl, doesn’t bump the bedroom doors. As he headed that way, he tripped over the stool, but it didn’t stop him. He kept walking confidently, and slammed into the bathroom doorframe, pretty hard. But he didn’t even react. I may have snort laughed, but he didn’t notice. He peed, gathered himself, and walked from the bathroom to his bed with giant steps, lol! He walked like he was drunk. It was awesome.
This week, we’ve started Rowan on some new vitamins. He has started taking vitamin D (which we all need) as well as omega 3s and a probiotic. We want to try and help his brain be healthy, because while helping him sleep has made a really positive difference, its clear he needs extra help beyond that. I know I have some friends who have been asking what we’ve used, and I won’t post the brands just yet, as we’ve only had a couple of days of use from them. What I will advise you, if you’re looking for these types of vitamins, is to READ THE BOTTLE!! Some of the omega 3s said a child should take 5-7 PER DAY!!!!! They seemed like a better price at first but nooooo way!!! Keep an eye out for the dosage!! But as for causing a change, he hasn’t been on them long enough at all. As many of you know, we have pretty big fish to fry right now, and not a whole lot of extra mental energy. But if Rowan’s sleep is still better than it was, its still a relief.
Today, Brady and I have been married for twelve years.
Last year’s anniversary was so wonderful. We got to get all dressed up in our wedding gear and Cher took some fast paced, ice cold pictures of us. They were beautiful. More beautiful than our original wedding pictures, I can confidently say. We then went out on a date to the Old Spaghetti Factory and hung out by the river. It was really nice.
In the last year, we’ve done SO MUCH in the way of our family and our future. Its been a really lovely time in our lives, and despite the world reeling under quarantine, we have only gotten closer.
This year, we celebrate being together for another year, reeeaaally honing in on the whole “in sickness and in health” thing. I knowingly married a tradesman. A carpenter. A contractor. He’s shoots himself with nails a LOT. He’s ripped his hands open with every tool in the book. He’s been burned and worn and hurt in varying degrees. I have been waiting for him to cut a finger off or something of the sort. But I did not see this spine stuff in our near future. Or in our future at all. No one did.
That white in his beard, though 😍
Off to Brady’s MRI last week, together.
We spend this anniversary anxious, heavy, and very much distracted by the chaos within our hearts. The impending MRI is hard to look past, and the week ahead is so uncertain.
But I still choose him, obviously. Whether I knew this in advance or not, I would always choose you, Brady.
For better or worse. For richer or poorer. In sickness and in health. To love and to cherish.
I may not be very brave in the kitchen just yet, but praise the Lord I’m that much braver than I was a year ago. Food prep for the week ahead is in full swing. Thank you, Tom and Rae, for offering childcare for this morning so we could get our ducks in a row.
Since the kids got dropped off, we turned on some good music, had some coffee, and began the kitchen stuff! I am not a meal planner, though I’d love to be, but for now, I just wrote down six suppers and I’m doing all the prep I can in advance, making sure I have every part of each meal. Meanwhile, my mom has offered to pick some groceries up for us today, so that is an enormous help!
The meals of the week are as follows.
Sweet and sour sausage. I browned all the sausage and its currently simmering in sauce. It goes over rice. we’ll either have frozen green beans or cold veggies beside.
Chicken salads. Thats just big salad with chicken nuggets cut up into it. Can’t prep that just yet because I don’t know what day we’ll have it and I don’t want the lettuce to get icky if its cut too long. But I have everything for it, and everyone likes it.
Honey chicken. I made the mix, and the chicken is frozen in the fridge, ever so slowly defrosting. Also served over rice with whatever veggie. This is definitely a family favorite. Maybe I’ll make a huge thing or rice and reheat it when I need it. Hmmm… 🤔
Pulled pork. Pork loin is defrosting in the fridge. We own BBQ sauce. Buns are on the grocery list for this afternoon.
Breakfast for supper. Bacon defrosting in the fridge. SO many eggs. Even cheese is shredded already.
Stroganoff. Egg noodles are on the grocery list. We have everything else for it. But I weirdly thought I’d talk to you guys about browning meat. I do it in the slow cooker, and I’ve had a handful of you message me and ask about it, so here’s the play by play of browning meat that needs zero handholding.
Today I did 4 lbs. I usually split that for two meals, but I brown it all together. Today, I got lazy/busy and threw it in mostly frozen. I added 1/4 cup of water per pound (so today, one cup of water) as well as my seasonings, which are always salt and pepper, onion and garlic salt.
I put it on low and neglected it for an hour. By that time, it was all thawed and starting to cook. This handy tool is the BEST for ground beef this way!
Its my ground beefer! Its actually technically a “food masher” courtesy of Pampered Chef, but I predominantly use it for ground beef, and its a total life saver from the big weird beef balls that are hard to break up with a wooden spoon. Especially doing ground meat in the crock pot, it gets balled up when its left for a while, and this thing just busts it right up!
Seriously, guys. Its a game changer.
Beyond these things, I plan to prep cheese rolls for the kids lunches for the week so I don’t have to make sandwiches every morning. And I’ll do a crazy amount of veggie chopping tomorrow, also for lunches. Fourteen of them, to be exact. Its not as gruelling as it sounds. And having the “sandwich” and veggies for the entire week of lunches in the fridge and ready to go saves my brain SO MUCH.
Honestly, crisis or not, I may try to prep like this more often. I really appreciate the headspace it opens up over the following week.
After Brady’s MRI late on Wednesday night, we realized that his doctors may not have been notified that he got a last minute cancellation spot. On Thursday morning, he called around to our family doctor, his neurologist, and his physiotherapist, and left them messages to say his MRI happened early, and to be on the lookout for the report. He called around 9:30am.
In true Dr. Guselle fashion, she looked into it immediately, and called Brady within a couple of hours of his message. Around 11:30am. She said she had not received the report yet, but that his MRI was on eHealth, and she was able to look at it. She confirmed that there is a “foggy, undefined area” of his spine, between T7 – T12, in the lower thoracic region.
She said she had already spoken to his neurologist, and that she would be calling Brady at the end of her workday to give him details of the full report.
Sooner than expected, around 2:30pm, Brady’s neurologist called.
She believes something is growing inside of Brady’s spine. She cannot be sure what, and for that reason, Brady needs a second MRI.
😩😰😭
This second scan will be performed with contrast, so he will have dye injected into his arm first, and it will produce clearer pictures of things like inflammation and blood flow. It is possible that Brady’s spine has a soft spot in it due to a lack of blood flow, but because his symptoms are changing literally by the day, its not as likely as something growing.
On top of that, he has a bulging disc in his neck, which is unrelated to his legs but is still something to note. Because, why not something else?
He got that news around 2:30, and the MRI clinic called at 4:00. His next MRI is booked first thing Monday morning. He is finally, officially considered emergent. Which is a completely bizarre thing to be excited about, but we are.
To catch everyone up to exactly what we’re looking at right now, Brady is in almost no pain. His back gets sore and stiff from time to time, because his legs are not working and his back is compensating. For months now, his left leg has been numb, and his right leg has had extreme muscle weakness and lack of motor skills. In the last week or so, however, his right leg has started to feel numb, and he has weakening of the left leg. Its changing very fast. It is an emergency. And its FINALLY being treated as such.
All of this being said, Brady has been told that, no matter the MRI results, he is being referred to a neurosurgeon. So we’re pretty sure we know where this is headed.
We have been offered SO MUCH CARE from SO MANY of you!!! For this, I am SO thankful!!! I haven’t known what to ask for, as everything is still just so uncertain. For the time being, I can say we are well taken care of! Praise the Lord!
I have a couple of kid-free hours tomorrow that I will use to prep kids lunches and some suppers for the week ahead. I have childcare on Monday morning so I can drive to Brady’s MRI with him and the kids can still get off to school.
I have a friend working in the hospital Monday who offered to hang out with me for a bit of time during Brady’s scan, so I don’t get too in my head.
I have live-in help, at the moment, and my mom just SO close by, so we are covered in case of an emergency.
As I’ve been saying for what feels like an eternity, we are just waiting. We don’t know what is ahead. I feel a dire need to prepare, and I’m starting to think maybe I’m not crazy, and we’re really going to be in need shortly. I just really don’t know. But I know nothing is done, yet. Its not over. And we continue to need your prayers and support.
Todays post is not expressed as well as I wish it were, but hopefully the information translates. I feel like things will be ok. But at the same time, we’re teetering a little.
This is Brady stepping in for a hubsby post. Hailey asked me to write about my experience in the MRI machine last night. So here you go.
I was originally booked to go in Monday the 8th in the evening but Hailey and I both felt like that was so long to just sit and wait so she suggested on Tuesday morning that I call to see if any time slot open up. Guess what, they had one! So we went in last night for 10:30pm. Apparently the MRI clinic at our hospital is open til 12am every day. They must be a busy place.
They had asked me to wear clothes that didn’t have any metal on them if possible so I donned my Daddyplushy-for-around-the-house outfit and Hailey and I headed in for a quick subway supper before my oddly late appointment.
Thanks be to Cher for finishing up bedtime with the kids so we could go in a little early!
We weren’t sure if Hailey would be allowed to come into the clinic with me to wait so she opted to wait in the van and occupy herself with scrolling on her phone and crocheting.
Turns out she could’ve come and waited inside because I saw a lady waiting for her husband in there. His pants and coat neatly folded on her lap while she scrolled on her phone. The guy definitely came out of his appointment in a T shirt and long johns.
Long johns in public. What has this pandemic done to us?
I was shortly lead into the back waiting area where I was given and locker to leave my belongings in and then sit and wait in a second waiting room. With no phone! I am way too dependant on my phone to pass the time because I really only had to wait about 15 minutes but I was SO bored. *facepalm* In typical contractor fashion I was looking around analyzing the workmanship of room I was waiting in. Hahaha!
I was briefly joined by a very chatty gentleman who apparently was scheduled for the exact same time that I was, however, he did not arrive in the window they asked him to arrive in and was made to wait longer.
I was brought further back around 10:10pm and I was asked to switch out my mask for a mask without wire and sanitize my hands. Makes sense.
I mentioned to the tech that I had been a welder in the past and that I’d had an orbital X-ray done recently to confirm that I didn’t have any metal flecks in my eyes, and I hadn’t received the results. She made a quick check of my chart to confirm that I had been cleared for the MRI and I was. I don’t know about the rest of you but I wanted to make darn sure I wasn’t gonna be stuck to the inside of that thing.
I was then ushered through and door with a big, bright ‘DANGER’ sign on it and I knew I was headed to the show. And it was a show. I felt very important to be brought in for a scan in such an extravagant machine. I was told to lay down with my head in the cradle and given headphones to protect my ears from the noise. I would liken the cage they placed over my head to being made into a human trouble light. Thoughtfully, a mirror was added within my eye-line so that I could see my own feet and the mirrored glass was behind which sat the tech at her computer. It was at this point she told me that my scan would be roughly an hour.
Yikes!
With some 70s soft rock as my soundtrack I slowly glided in about waste deep. The close proximity of the machine was a small adjustment for but I was prepared for it and it wasn’t an issue for me. The tech then warned me there would be some louder noises which was followed by what a noise that I would describe as shoving your head into a dot matrix printer while it’s printing.
I was slowly moved further and further into the machine as it was ‘getting the lay of the land’. After being slid in as far as my shins it stopped trying to be a printer and instead decided to warn me that my space ship was about to self destruct. Imagine being onboard Apollo 13 when everything went to poop and thats about how it felt to be in that machine in that moment. Not the panic, just the sights and sounds.
I was then pummelled with a barrage of sounds I can only describe as a super distorted synthesizer turned up to 11. And controlled by an annoying sibling. I was also able to pick out some metal drummer style blast beats and variant timings. An alternating 9/8 to 7/8 time signature was a groove that was hard for the metal head in me to resist. I found it to be an oddly musical machine.
I quickly came to enjoy the solitude and the abundance of sensory input gave me a sense of what its like to be in a sensory deprivation tank. Perhaps a sensory overload tank. Has anyone copyrighted that idea yet? Maybe I should. Hahaha
At 20 minutes in the tech stopped the machine and asked me how I was doing. I responded that I was doing well but that my face was itchy. I heard a ‘You can take care of that now’, and managed to find a way through the trouble light cage to scratch my face vigourously.
The next 20 minutes were pretty low key and the tech’s periodical ‘The table will move now’ was a singsongy break from the deep distorted synth monotony. And after another 20 minutes she stopped to check on me again. Itches had come and gone without being scratched and I was good to keep going.
The last 20-30 minutes probably went the quickest. By this time I was well accustomed to the noise and the occasional table movements. It was soothing, and I had been up since 6:20.
And then I dosed off. During the MRI. It was nice.
I’d wake up every minute or two when the table would move and then slowly drift off again. I have no idea if the tech could see me face or not, she could probably tell that I fell asleep a couple times. But I didn’t mind.
Eventually the synth stopped and the tech chimed in that we were done and she was coming to get me out. I was slowly brought out of the machine like a life size 3D printed Brady and brought to life. She informed me that the scans would be looked at the next day and passed along to my doctors on Friday and she ushered me out.
The MRI clinic was eerily quiet and abandoned. I’m pretty sure the tech and I were the last two people in the clinic. I quickly grabbed my stuff out of my assigned locker and made my way out of the hospital to find my wife waiting in the van.
In true Hailey fashion, she was helping a stranger in need. Another guy in the same parking lot had a dead battery and she was attempting to give him a boost. Unfortunately, our van requires a very specific method to boost another car. Luckily, I arrived just as they were attempting to figure it out and I was able to help and get the guy’s SUV running within a minute or two. A fun activity to end an eventful evening.
So that’s the story of my MRI last night. I weirdly enjoyed it. And I hope my retelling has been enjoyable. 🙂
As you can imagine, time is standing still as we are anticipating Brady’s MRI later today. In an effort to not just post about how hard waiting is, I’m going to tell you a funny story about a dream I had the other night 🙂
In my dream, we were on a family vacation somewhere where our hotel was attached to a mall. West Ed ish, but it was smaller. We had gotten up in the morning, and were getting some hotel breakfast together. The kids were doddling hard, so while they ate, Brady said he wanted to buy me a new pair of jeans.
Now, in reality, I have FINALLY found jeans that fit me the way they’re supposed to! I have a couple of pairs from Value Village. So, in the dream, Brady wanted to go to the actual store and buy me a fresh pair. So it made sense.
In the dream, he insisted on going to pick a pair on his own. He didn’t want my input. He just wanted to get me something by himself, which felt really sweet and also a little risky, haha! But I told him to go for it!
He returned shortly to the hotel, telling me there was a whole new jean hybrid (yup, go with it) and he wanted my input after all. So, I’ll clarify, in the dream, we fully just left the kids in the hotel, hahaha! Because we wanted to go shop without them. Lol! NOT reality, guys.
So we went to the mall and walked into American Eagle. It was oddly small and not very full. Brady pointed me to the wall of folded jeans, and guys, they were ALL flares. No burn on people who wear flares, but I do not, so it was kind of a shock in the dream. I was pretty hesitant. Then a sales associate started talking to Brady begrudgingly.
“Did you talk to her about the insurance yet?” she asked him.
He kind of laughed awkwardly, as he hadn’t, because his gut was right that I didn’t want any of the flared jeans. So he told her he hadn’t. And she got very snarky and rolled her eyes BIG TIME at us.
Then there was a chuckle behind us, and we turned around to see the manager, stacking a display table with (wait for it) hundreds and hundreds to tins of corn… *shrugs* She was quietly shaking her head at the situation and commented “Whatever, their loss!” As if somehow, not getting insurance on my jeans would’ve been a great travesty.
At that point, we saw that the new “hybrids” were all only $20. Definitely a costly item that needed insuring.
So we left, and went back to the kids, who hadn’t missed a beat, left alone in a hotel room.
Oy. What a thing. What a stupid dream, haha! But it was a good light moment in this otherwise horrifically overwhelming week!
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.
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.
