Moving On Up

Everyone knows by now that we sold our KC house.  We did it in record time and I am very sad.  I went home last weekend to pack up what we left there, and I cried every day about it.  Something as simple as all the trees bummed me out.  Eastern Colorado is high desert, so not much grows here but firs and aspens and tumbleweed.  That’s no fun.  But we are under contract with a new house. It’s in a town called Falcon that’s just northeast of the Springs.  The town is newer so the houses are too, and we’re getting a lot more for our money there.  We close on June 8th assuming everything goes well with the inspection. We also may be inheriting the seller’s dogs because they’re being relocated to Germany and can’t take them.  They’re a 12 year old Landseer Newfoundland named Acadia, and a 7 year old Bernese Mountain Dog named Snickers.  Big new buddies for Brady.  I’d really like to start with a baby, but poor Cadie won’t be around for too much longer, so I guess we can ease into the whole dog thing and get a puppy for Snickers to help me raise when the time comes.  I’m excited for all the space we’ll have, and new house stuff I get to do, so I guess it’s a good thing.

Another good thing are the 16 seizure free days Brady Adams has had.  We’ve never gone this long before that wasn’t a honeymoon phase from some new pharma, so this is a really big deal.  There is a 3 component cocktail that is likely the cause of the relief, though I don’t know exactly what’s doing what, or if it’s just 2 pieces doing all the work, but whatever it is I am not messing with it anytime soon.  He’s more alert, aware, verbal, and he’s stronger.  He’s doing things that are getting PT and OT excited, and he’s even proving himself to be helpful.  It’s really cute.  We have been juggling with the idea of starting him in preschool in the fall, and if he keeps this up and continues to advance, I will gladly send him off for a few hours a day to socialize and learn.  It’s free for him because of his extra needs.  Thank you, Colorado.  The two preschool teachers at the school we’re assigned to are also special needs teachers, which is amazing and makes me feel so much better.  I haven’t met with them yet since the house isn’t finalized, but hopefully sometime over the summer I’ll have the opportunity.

That’s about it.
-xxm

 

 

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Good News Bad News

I never know which to give first, but I prefer the bad news because then it gets followed with something better.  So here’s the news:  we’re making this move permanent.  We’re selling our Shawnee house and buying here in the Springs.  We decided to get realistic with ourselves, and that means that we can not safely (legally) go home in July when our lease is up.  I think Ryan thought we would head home more so that I did, but I figured we’d just extend our lease here and deal with renting out the house in KC.  Not happening.  We need to live in a certain school district here to get the best benefits to Brady’s education that could start as early as this fall, and that is also the newest and probably the nicest part of town.  The cost of living is quite high here. Even an hour south of Denver you still pay a premium for the mountains, so we need to buy.  We thought about heading to Denver but we like the smaller town feel of the Springs. Plus the cost of living there is also insane, and though I certainly don’t mind needed to renovate here and there, with Ryan working from home we need space, and I don’t know that we could get much of that there either.  At least not with our budget.

I’m heart sick over this decision.  I adore that house.  We’ve put so much work and love into it, and it was supposed to be our forever home.  I know it’s just a house, but we never planned to leave it and so I got attached.  The upside is that we updated everything and it will sell quick, and hopefully for top dollar.  The listing is going live on Thursday and I’ll post a link to FB in case anyone is interested.  I’m going to head back in a week or so to pack up everything that we left, and Ryan will follow a week or so after that to get it all in a pod or something to move it.  We can’t all go and risk getting B’s medicine caught in security at the airport.  Or worse, if B needed to go to the ER for some reason and they caught wind that he’s on cannabis, they’d be calling the cops so fast and our kid would get swept up by the corrupt CPS of Kansas and we’d probably never see him again. Or he’d die in their custody.  I’m not kidding.  They’re horrible.

Here is the good news…. I can get a dog!!  It’s time.  Tash & Jezabel have been gone for some time now, Brady needs a playmate, and I need a distraction.  And it’s spring, so potty training won’t be in the snow or cold.  It’s perfect timing.  I want a weimaraner but I’m not sure I am ready for that much energy just yet, so we’ll probably adopt a kid-friendly mutt.  It just depends. I need a hiking buddy too, since that’s how I plan to regain my strength and stamina that chemo stole from me.  This cancer chic look I’ve got going isn’t too great either, so I could stand to put on a few lbs of muscle.

So that’s the good and the bad.  Hopefully in 3 or 5 years we’ll be safely able to go home. The cost of living here is only going up, so we can sell the house here and buy another one back in KC to make our forever home.  Or maybe we’ll decide to stay, or move to another part of CO.  It’s an amazing place we have yet to explore, I guess only time will tell what we’ll be able to do.  That and descheduling marijuana.  That would help things too 🙂

Ouch

We’re in the middle of the dreaded Keppra wean.  It’s the last pharmaceutical Brady is on, and it’s a real pain in the ass to wean.  We’re going super slow, and after the current dose we’ll be completely off of it, but it’s taking time and he’s having some rough days.  The doctor doesn’t even know we’re doing this because she’d probably tell us not to, and more importantly because she sucks and I hate her. I’m planning to request a different E doc when we go up to Denver Children’s next month for something else, though I’m not sure how well that’ll go over.  Too bad.

I had a double mastectomy last Thursday.  It sucked pretty hard.  I only stayed overnight in the hospital and they sent me home with a catheter on either side of my spine and a boat load of pain meds.  Ryan had to pull them out a few days later. He wasn’t thrilled.  I don’t feel too awful anymore and I’m not taking the pain meds, but holy moly were those first few days rough.  I have also built up quite a tolerance to various forms of Oxy.  I’m not allowed to raise my elbows higher than my shoulders for at least 4 weeks, so I can’t do many of the things I usually take for granted, and now I know how short people feel. Ryan and my mom have been amazing, and Brady is still in one piece, so I can’t complain. Ryan’s sister is coming in later this week followed by two of my oldest friends, then my sister-in-law & nephew, and then my brother.  We’ll have a couple of days here & there that Ryan really needs to step in and take over, but for the most part we have total coverage until I’m better able to do more.  I’d say we’re pretty lucky.

Last week the breast surgeon’s office called with the pathology results from surgery and it turns out that there is no more cancer anywhere.  I’m cancer free.

 

Vote for Bernie!

-xxmel

Dramarama

I am a pretty persistent person.  I like getting my way, and I enjoy finding ways to get my way.  Mostly I like to argue my case, and half the time I don’t even know what I’m saying, but it seems to work.  (Perhaps I should run against Trump!)  I appreciate other people who are the same.  Like my oncology nurse, Rose.  The day before each round of chemo I have to get blood drawn to check all my levels, then later I visit with Rose who confirms everything is OK and clears me for the next day.  Yesterday was one of those days.  During the exam I reminded Rose of my back-to-back visits to the ER on New Year’s eve and the night before for a possible blood clot in my arm.  I’ve had 2 ultrasounds and a chest CT/angiogram to find the clot over the last 3 months. Nothing was found.  It seemed hinky because my right arm has been swollen and veiny since before my 2nd round of chemo, but we can’t find anything.  Everyone had pretty much written it off as no biggie, though my arm wasn’t getting any better.  Rose, who was seeing this for the first time, still wasn’t satisfied, as I clinically show all the signs for a clot, so she called an IR.  I hadn’t heard of these docs before living here. Interventional Radiologists do amazing things that I don’t really know how to explain because I don’t know much, but I do know they deal with the tiny parts of our body and put things back together in ways I can’t imagine, and save lives.  The IR she spoke to told her to send me downtown to the central campus ASAP, and he’d wait for me and do a veinogram himself.  90 mins and a bunch of BS and confusion later, I was at the hospital getting a catheter put in my arm by a nurse who had also waited for me to get there.  It was 630pm at this point.  No one was around but the IR and the two nurses helping us out.  So awesome.  A few mins later, I was being shown an Xray showing a clot in the vein that my port’s catheter is in.  Finally an answer! Now I have to inject myself every day with some fast-acting blood thinner.  Probably for a week or so – I’ll find out later today after my last round of chemo.  Joy.  I’ll add that to my resume of random skills. But it’s my last round of chemo!!  I’m getting it now, and about to snooze from the Benadryl. Wow IV Benadryl, lights out. At least my view is nice:

0126161019a

Brady is the reason for this blog, as this was originally his adventure.  Things have changed quite a bit in our house regarding illness, but not all of it has been bad.  Brady went TWO WEEKS without a seizure shortly after my last post.  It was amazing.  Since the two weeks ended the day after Christmas, he’s had up to 5 a day, which isn’t terrible for him but we don’t like it.  We’ve been playing around with his oil dosage (because we can make changes up and down like no big unlike the awful seizure meds), so we went up on the oil for about 2 weeks and things didn’t improve, so we dropped down to just above the dose he was on when he was seizure free.  He didn’t have a seizure yesterday.  I’m not sure if this is a trend, but I’ll happily take any seizure free day he can give me.  He’s sturdier, more stable, and we are seeing improvement.  Before with all the clusters of seizures there was no chance for improvement in him because they were so debilitating. Now, he may snooze a while after a seizure or he may not, but it’s not impeding his development.  He may be a little floppy afterwards, but that passes after a bit.  PT is seeing improvement, and we’re adding in new things each week.  Most standing, reaching, sitting.  He’s also off the Pediasure.  I’ve helped him to relearn to eat orally, and since he’s gotten so good at it and is eating more than purees, I can give him higher calorie foods so he doesn’t need to tube feeding.  We are still giving liquids through the tube because we don’t know if he’s still aspirating them, but I’m going to call his ped soon to set up another swallow study to find out for sure.  If he’s not, or if it’s just watery liquids, I’ll reteach him to drink from a sippy cup and use thickener for water or juice until he’s no longer aspirating.  These are all marked improvements that we couldn’t have achieved when he was on so many meds and having so many seizures.  Thank you Cannabis!

More thanks are due for all the supportive love notes, cards, gift cards, and care packages. We have had 2 amazing cash donations that we will never be able to repay, and they were unbelievably helpful.  Every 3 weeks we get sent a new batch of bills for all of the appts I have, people I see, chemo I get, and more.  The money has helped us to manage all of that and keep us out of trouble.   Tomorrow I schedule my big surgery and plan for a chemo-free life.  Time has flown and I’m so grateful for that.

-xxm

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

On The Mend

Oh, hi there. I’ve missed you.

It’s been nearly two months since my last post but I finally have some good news for a change so I thought it was time for an update. Guess who’s half way done with chemo? This gal!  The first two rounds were nothing short of awful, but the third wasn’t the worst thing in the world, and I can do that 3 more times. I’ll still have infusions every three weeks through September or so, but there are no icky side effects to that med so I will be feeling better before I know it.  I’ve been taken great care of so far by my mom, my brother, and 2 of the best friends on the planet.  I’ve been spoiled rotten with amazing food, care, and even a buzz cut. I was getting tired of the short ‘do with only half a head’s worth of hair, so we shaved it the other day.  It’s hideous.  Still to come are 2 more great friends and my awesome sister-in-law.

The massive outpouring of love & support I have received has been nothing short of overwhelming.  The cards, care packages, and frozen Chicago pizza has been so heart (and belly) warming, though Ryan is starting to get a little whiny that he never gets anything, so please send him some love too.  He likes tools and t-shirts.  Seriously, people I would never expect to drop a card in the mail have, and it makes me feel warm & fuzzy to know they’re thinking enough about me and our situation here that they want to let me know personally.  It’s amazing.  Chemo makes me very emotional, so I get a little weepy about it, but I love it and love you for taking the time.  Thank you.

Oh ya, Brady.  Brady is doing great!  He’s not back to his old self by any means, but we switched to a different cannabinoid called THCa, and within 5 days his seizures dropped dramatically and he’s chattier than ever. We really weren’t seeing even cognitive changes in him on the CBD/THC combo, which typically occurs within a few weeks, so we decided to switch it up to see what happened, and well, I’m a genius. He is still having sleep cycle seizures, but no clusters at all, and on Monday we will increase the oil for the first time and perhaps that’ll take care of those. Who knows?  There are no instructions to this, so it’s all trial & error. THCa is the bud before decarboxylation (a fancy word that describes what happens when you smoke or vaporize flower) and becomes the scary THC that gets you high, you reefer maniacs. And since it’s been extracted into the oil before that, there is no chance I’m getting my kid stoned, in case you still weren’t sure.  I, on the other hand, have been using Brady’s THC oil when I’m feeling crummy, since, you know, it works to alleviate nausea, anxiety, muscle aches, headaches, and so on.  I simply rub it on my gums and give it a few minutes to kick in.  I’m not allowed to take much Tylenol or Advil since my blood levels are already so low and those meds thin the blood more.  THC is my friend.  We rubbed it on Brady’s gums the other night after Advil wasn’t relieving his teething pain, and waddayknow – he stopped whining and finally went to sleep.  I may fail a drug test, but then I remind myself that I have cancer and don’t really give a shit about much else but getting through this in one piece.

Brady’s ulcer is also gone.  That’s pretty amazing news.  We’re trying to get him to eat orally again and reducing the Pediasure, but it’s a slow process and will take a while to strengthen his lips & mouth again. He still likes the taste of everything though, so other than making a mess, it’s going pretty well.  We’re going to add feeding therapy in for a few sessions to get any tips & tricks she can share, and go from there.  He still gets weekly PT and we’ll add in OT and speech when the time is right, and I’d like to believe that with more time and less seizures, this kid will make a comeback. Everyone loves a comeback story.

We want to go home, but in the meantime, send chocolate.
m

Bump in the Road

Things have been really, really strange since I last updated on Brady.  He’s doing better, we think.  We increased his Prilosec dosage by nearly double after another nasty call to the GI clinic, and learning that the dose was way too low this entire time.  Idiots! How do you get that wrong? I’m furious.  This was the third attempt at getting it right so if this doesn’t cut it I’m switching docs. Sorry Lady.  We added back in a teeny dose of THC, literally just from my fingertip to his gums, at the same time as the CBD.  Next weekend we’ll increase the CBD for the first time since the reboot.  We’re also down to 1.5ml of the only pharm he’s on, and it’s a wean day, but he’s not appreciating this last drop, so we’ll hold at this level until he stops reacting poorly to it.

On October 1st I went to the doctor and was told I have breast cancer.  I was stunned, and never in a million years thought I’d be told this at age 36.  The following week was a whirlwind of tests, blood draws, exams, etc., including a port placement surgery for chemo.  I’m currently getting my first round of chemo as I type this.  Surprise!  Chemotherapy would not have been my first line of treatment for cancer, but this is all about Brady now, and if chemo is going to help give me an approximate 90% remission rate, I’m going to do it.  I would have preferred to do just a high THC regimen for 90 days, but this isn’t about me anymore, and Brady needs me to get chemo, so here I am.  I’m disgusted with this process.  It’s gross and poison and backwards, but it can cure me, so I do the chemo. I have a very aggressive, triple-positive hormone-fueled cancer, but it doesn’t look like it’s in my lymph nodes, which is AMAZING, so I shouldn’t need radiation.  I have a year of infusions.  6 rounds of chemo every 21 days, then the remainder of the year I’ll just do an infusion of one med that’s geared directly for this cancer and helps to block the hormones from helping the cancer grow, I think.  I’ll need a mastectomy, and ultimately maybe a double.  I’ll do that about a month after I finish the 6 rounds of chemo, then reconstruction, then I continue with and finish up the year’s worth of infusions.

I am livid.  I’m not sad about having cancer, but I’m sad that I will likely get very ill after each treatment, and sad about all my hair falling out that is finally long enough for a pony, and sad that this is taking over my life right now. The timing is super shitty, to say the least.

There are some upsides to this, however.  I’m going to list them and if you think of more please tell me.
I will save on shampoo and conditioner
I will save on hair products
No shaving!
Lower water bills because my showers are going to be so short
I’ll be cutting down on primp time since I have no hair to brush, dry, straighten or style.
Lower grocery bills because I’ll have no appetite
Weight loss!  My mouth and all foods will taste like metal.  No thanks.
Cute hats and scarves to wear solo or over a wig.  And since it’ll be cold outside it’ll be normal to have a hat on.
NEW BOOBS!  It’s time to turn in this used pair for a new set anyway.

My friend & I are going to shave my head before it falls out.  I imagine long hair falling out is traumatic, so I’m going to give myself a military cut before it starts to go… in like 2 weeks.  It’s like when a man grows then shaves his beard – all the fun he can have on it’s way out. Why not have fun before the tears?

I’m not really a fan of the color pink.  I would have been fine had this cancer skipped me and went elsewhere, but now I’m a forced advocate for it and I find that frustrating.  Without a wig, outside of the house anyone who looks at me is going to know I am going through chemotherapy and likely have cancer.  I realize it’s not an invisible disease like epilepsy, and that’s OK, but I don’t necessarily want to become a walking awareness ribbon.  Maybe over time I’ll change my mind, but for now I’m not interested.  I’m also so scared of getting sick while my immune system is tanked, so I’ll be doing a lot of hibernating this winter through the cold.  If you enter my house you will be immediately directed to the sink for a good hand washing, followed by your very own mini hand sanitizer to use over and over.  Please don’t come to my house if you’re not 100%. Even the smallest little cough can cause a massive infection that could hospitalize me, or even worse.  Which reminds me – I was told not to smoke weed. That’s OK, I’m not a fan anyway, though I will be starting a CBD regimen.  I promised the oncologist that I wouldn’t take a high THC during the 6 rounds of chemo because we don’t know how they interact with each other.   That’s fair, and better safe than sorry.  But once the chemo is over I’ll be starting a high regimen. I can send you all the info you need to finally realize and believe that cannabis kills cancer cells, and not the healthy ones, if you so desire.  But smoking it is dangerous because if there is anything on the actual buds that shouldn’t be there, I could get a fungal infection and die.  So I’ll pass the joint 😉

I don’t want to make this blog about my cancer journey, but I’ll pepper in some updates here & there.  I’m going to be this; there is no other option.  I said before that I didn’t come here to fail, and I won’t.  That means my cancer too.  Right now I need to get myself healthy in order to get Brady healthy, and that’s OK.  It’s a new road on the adventure that we hadn’t planned to take, but I’m certain it meets back up with the path that we need to be on.

Happy breast cancer awareness month, y’all.
-xxmelissa

Reboot

Usually I have so much to go on about, but lately I’ve either become more realistic about what others find interesting, or I’m just lazy.  I finished my CNA course and graduated last Friday. That’s what I’ve been doing for the last 4 weeks.  It wasn’t great; a lot of it I knew from Brady’s hospital stays, but I learned some really good stuff and if I ever want to work in a nursing home I’ve now got the skill set.  We had our last week of clinical in a nursing home, and some of the residents intimidated me, but I also made a few friends that I won’t soon forget. One told me that after she broke him out of an Arkansas State prison, she secretly married Jay Cutler and they have a daughter named Bethany.  Who was I to tell her otherwise?  Another man was just so lovely and I felt the need to care extra hard for him.  I probably annoyed my classmates because I hovered over when they cared for him, like I knew any better than they did.  Each night was an adventure there, and my classmates were all amazing parents of children with various specials needs that I hope to keep in touch with.  Now I’m done and I get to start getting paid to hang out with my kid, who still hasn’t been doing great, and I blame the ulcer for all of it.

We were never supposed to stop taking the Prilosec when it ran out, but no one told us that.  So a week went by before I mentioned it to the GI clinic and they rushed me a refill.  His seizures are still frequent and since his triggers are mostly internal, I know it’s his guts.  He’s hardly taking anything by mouth, but he’s getting stronger again and hopefully soon I’ll have some better news.  We also finally started PT last week and I really like the therapist. She’s no Mindy, but she means business and I appreciate that.  I’m going to Tiger Mom the shit out of this kid and work his little tail off to get him going again.  That’s my job here, and I don’t intend to fail.

Last week we did what is called a Reboot.  It’s the abrupt stopping & restarting of the oils, like you would a computer.  Since they’re not yucky pharmaceuticals, you can just quit them cold turkey without the nasty side effects, and be OK.  The cannibinoids can build up over time and become less effective in your body, or you may be giving too much and have more seizure activity, so you reboot and give the system a quick break, then restart at the very lowest level. You work your way back up again like you normally would, but quite often the user doesn’t need as much as before because their endocannibinoid system is working more effectively.  Or something like that.  This includes any THC, THCa, or other cannibinoids you’re on.  We’re just on CBD and THC right now.  We didn’t restart because Brady’s seizures increased, but because he’s been so sick since before we started the oils, we wondered if we missed his sweet spot at a lower dose and didn’t even know it.  So we came off for a whole week and I just put him back on yesterday.  We’ll see how it goes.

I want to extend a heartfelt Thank You to all of you who are supporting us on this adventure. No one has openly admitted to disagreeing with our decision to do this, or given us any indication that they feel what we are doing is bad, or wrong, or foolish.  I have gotten a few side eyes when I first say what’s going on, but that’s really about it.  Honestly, this was not a hard decision for us to make.  We’d been talking about it for months, and after Ryan’s sister passed we said Fuck It, life’s too short and we’re not doing this anymore. But it was very hard to quit my job, to leave our friends & family, and move to a foreign land where we know no one. We’re not only refugees to the state of Colorado, but we’re also prisoners because I can’t legally take Brady’s new meds across state lines. Driving is a big risk, but flying is not even an option.  Federal laws frown largely upon the transportation of Cannibis products, regardless of state laws. I can quickly smell the oils through a glass bottle with my nose, so I’m sure a drug sniffing dog at DEN is going to also. So come visit me, because I miss so many people so much but I can’t leave here to see you.  On that note, no one is allowed to get married, have babies, or die until I can be there.

Send money.
xx-melissa

Update

I don’t have any fun or exciting stories to tell, so I thought I’d just share what we’ve been up to lately.  I’ve accomplished a lot. I applied for & got Brady accepted for Colorado Medicaid. The state of Colorado is amazing and they make it really easy to get without having to apply and be rejected over and over (Kansas). Epilepsy is considered a disability, so the state will kick in and cover any medical costs that my garbage insurance won’t.  This includes prescription meds, hospital stays, therapy equipment, EEGs, doctor visits, and on & on.  I don’t fully understand how it all works, but it’s on waivers, whatever that is.  We got the letter the other day and it was a huge relief.  This will be helpful since we just unexpectedly spent 3 days in the hospital.

We got the Red Card!!  We had our appt in Denver with the 2 doctors we needed to see. The receipt of application counts as the card until it arrives in the mail in about a month.  The whole thing was a real trip, but people were so nice and I made a great CBD caregiver connection in a guy who was renewing his card.  People around here who home grow & make their own tinctures are called caregivers.  I don’t know how they can legally sell it, so they basically donate it to people in need like Brady, and if it is a strain that works, we’ll continue to get it from them, but pay for it somehow.  But, Colorado Springs just passed a no in-home ethanol law, so now lots of people can’t make their own oils because they were using alcohol for extraction.  You can also use coconut/safflower/sunflower/etc oils, and that is totally organic, but I don’t think the removal of the cannibinoids is as strong as it is with alcohol.  Again, I don’t really know all about it yet, but people are pissed.  I digress.

We switched to a different oil and are no longer taking the Charlotte’s Web.  We may have been hasty in our decision to switch, because we only gave it two weeks, but in that time we saw no developmental or cognitive changes in Brady, so we wanted to move on.  We put him on Haleigh’s Hope CBD, which is all organic, and also got their THC, but we won’t use that regularly for a while, and only if need be.  Today marks 1 full week on it, and we haven’t seen much of a change in him, but that could be because he’s been sick for weeks and we didn’t know it, until we landed in that hospital I had mentioned above.

Did you know that babies can get ulcers?  Your baby probably won’t, but mine did, and it was bleeding and he lost about half his body count before we even knew about it.  I was proud of myself for not rushing him to the ER for a simple fever and diarrhea, but after a few days of this and then lots of breakthrough seizures, I took him to the peds urgent care up the road on Sunday.  He had a fever but everything else seemed fine, still the nurse did a CBC just in case there was an infection.  There wasn’t, but his red blood count was nearly critically low, so they made us go via ambulance across town to the children’s hospital ER.  They redid the CBC and his count was even lower, so they said he needed a transfusion.  That was really scary, and we wanted to give him some of ours, but it doesn’t work that way and so we signed off on it. They admitted us for the night and after determining his stool had blood in it, we knew he had a GI bleed somewhere. The next day they did an endoscopy and found an ulcer just below his stomach.  He’d been on a med that coats the gut since the night before in the ER, and the ulcer had already quit bleeding, and there was nothing else in there to see, so that was the culprit. Guess what the cause was…for my 26 month old little baby boy.  You’ll probably be wrong.  It was from ADVIL.

Kids with seizures have more seizures when they’re teething, because teething causes inflammation in the jaw & skull like any other head trauma does.  What do babies do?  They grow teeth.  What helps teething pain, swelling & inflammation, and upset teething seizure baby? Advil does.  Who let her ped & neuro back home know that Brady was getting buckets & buckets of Advil on the regular for the last year or so?  I did.  Who said it was OK?  They did.  Clearly they were wrong.

As one of my favorite people aptly described it, this was a “phew moment”.  It could have been something more, something bigger or worse, but it wasn’t. He’s off all forms of ibuprofen and has to take 2 meds for the next 2-3 weeks to heal him up and we’ll move on. He only has his 2 year molars left anyway.  Even though those are the worst, we’ll suck it up or give him some Children’s Tylenol and ruin his liver instead.

But guess what?! You know how Brady has been in super rough shape since landing in Denver over a month ago?  The ulcer could explain all these extra seizures.  The seizure threshold is lowered with illness.  We assumed it was the altitude, and on the recommendation of the amazing Medicaid lady who also has a child with epilepsy, I had his ped order us home oxygen and we throw it on him when he would have a seizure. We think it’s worked a little bit, but it was no miracle remedy, and now that we are gaining control of the ulcer situation, I really hope to gain more seizure control too.  And who knows, the new HH oil is only 1 week in, so maybe in another week or two, or after an increase or two, we’ll get even more control and we can get this kid back on track.  I’m going to get very tiger mom on this kid and whoop him back into pre-E shape.  Or try and try and try.  I’ve got him hooked up with 3 different groups of therapy.  That’s another major bonus of Medicaid.

There’s more.  I’m starting my CNA course at the end of the month.  It’s 3 weeks of class + 1 week of clinical.  I’m doing this because the amazing state of Colorado pays parents to be their child’s caregiver.  A few other states allow family caregivers, but Colorado is the only one who allows the parent to be the child’s caregiver.  An added bonus is that the company I’m doing it through is sponsoring my class 100%, and once I finish the class I’ll be employed by them and will immediately start getting paid, and I don’t have to reimburse them whatsoever.  They came out to interview us and determined how many hours per day Brady would qualify for, and that is how many hours per day I will get paid.  It’s 7 days a week, to boot.  About a month after I take the course I’ll take the state exam, and assuming I pass, they’ll give me a $1.00 raise.  Yippie 🙂 I won’t exactly be rolling in it, but it’ll be a big help for our situation out here, and my daily wine requirements.

Normal

Today marks the one year anniversary of the last day that things were normal.  I had a pretty normal life: a good, normal job; a nice, normal house; a normal husband, normal friends, normalish baby. Other than some developmental delays that he was beating, Brady’s biggest hurdle at 13 months was sleeping through the night.  We were always so tired. Then the weirdest day started.  I think it was a Wednesday. Ryan must have had an early call because he was already out of bed and in his office.  Brady was sitting on my bedroom floor while I blow dried my hair before work and I remember he tipped over for some reason.  I was waiting for the wail that he always let out when he bonked his head – he was such a drama queen.  But there was nothing.  He was just laying there like it was no biggie, even though he’d hit our bed frame on the way down.  Huh, I thought.  That’s weird, but good.  I didn’t have time to calm him down that morning anyway.  In the 15 mins it took me to get to daycare, he’d already fallen asleep in the car seat. That was odd.  I brought him in and plopped him in a pack and play, and left. Daycare said he slept a lot that day, on and off, and that he was acting weird, but by 4pm or so he was really upset, so Ryan went and got him. I remember being terrified about this, but not knowing why.  I just knew something was wrong.  I think I left work a little early because I was so uneasy and I wanted to get home to him.  When I got home he was laying on the living room floor, and upon seeing me he smiled.  I melted a little, because he didn’t always do this.  It still took him a few seconds to recognize me and get excited, but not on this night.  He was thrilled I was home. We had our usual evening of kisses and me watching him finally crawl around the room.  Ryan had fed him before I got home and was upstairs doing something else by now.  I usually hogged the baby all night, so this was normal.   He was crawling away from me, because I remember looking at his adorable butt when it all just stopped.  He froze.  I thought he was bearing down to poop, because that’s how he was positioned.  Except he stayed like that for way too long.  I got underneath him and he was just staring at the floor below him, so I scooped him up and we were face to face, except he wasn’t actually looking at me.  More like past me, and he wasn’t reacting to how I’d just grabbed him off the floor in a hurry.  I called for Ryan who came to the top of the stairs.  I told him I thought something was wrong and that we needed to go the hospital, but by the time I’d finished those words I’d already decided that I was about to call 911.  I didn’t even really know why; I had no idea what was going on except that my little man was almost frozen, and his mouth looked weird, kind of grey, but I couldn’t have told you that then.  He just looked all wrong.  Ryan ran down and took him from me while I made that call and we weren’t sure he was breathing and I didn’t know what to say to dispatch and I couldn’t figure out why it was taking them so long to get here and why wasn’t Brady responding to us and what was even happening right now.  Paramedics, police, and firemen all showed up in very dramatic fashion but by then Brady was breathing fine.  They took us by ambulance to the hospital and that’s when normal went away.

After 16 days in the hospital, Brady had a heart that was inside out and on the wrong side of his chest, central apnea that would require a tracheostomy & ventilator to keep him breathing for the rest of his life, and epilepsy.  Only that last one ended up being true, and a year later I think it was the worst of the diagnoses, though at the time I was so relieved.  How foolish of me.  Turns out his heart is midline, but it’s otherwise perfect.  I remember Ryan saying at the time how when he is older & in school he’ll put his hand in the middle of his chest when he says the Pledge of Allegiance. That was hilarious.  I was half-cocked on a diet rich in Diet Coke and no sleep from 10 days of PICU beeps and alarms, but it is pretty funny.

And tomorrow marks the 1 year anniversary of the last day of Brady’s life that he had never been on a ventilator, and the day after that marks the one year anniversary of the last day of Brady’s life that he didn’t officially have epilepsy.

Our new normal isn’t really all that different than before.  I still have a good, normal job, it’s just as a full-time mommy to Brady.  I still have a normal house, instead now it’s a rental in beautiful Colorado, I still have my normal husband (somehow), and I still have normal friends.  Granted, some of those friends have shown to not be as great as I had previously thought, and instead others have proven to be better than before.  It’s interesting to watch people change when something goes terribly wrong.  And I’ve gained a whole new network of support through a group I joined full of other parents of children with epilepsy, and others trying to save their kids with various ailments by coming to Colorado for marijuana.  It’s amazing the support strangers can provide just by having a need in common.  So even though I miss things being much simpler and somewhat stress free, I’d say the new normal is pretty darn good.

Two Steps Forward

We’re all moved & settled into the house. It’s got plenty of space which is great since Ryan works from home.  Brady & I have been running around most days getting the odds & ends we still need, so we’ve gotten a lay of the land pretty well.  We learned where the main Children’s Hospital campus is because we had to take Brady to the ER last Friday afternoon after a weird interaction, and I had my first Carl’s Jr cheeseburger on the way home. Meh. The fries didn’t exactly meet my expectations. Ryan hated all of it.

We took Brady off the Charlotte’s Web hemp oil the other night.  He’s been a complete seizure machine since we got here and I am not sure why, so I want to slow my roll a bit and not have too many moving epilepsy parts going at the same time.  I’d like to be able to pinpoint 1-2 possible causes for the pickup, and adding a new AED into the mix only complicates things.  The seizure med I’d just weaned him off of takes a good 2 weeks to really get out of his system, and it’s a nasty wean since it’s a benzo, and benzos suck so so bad.  I’m really hoping that’s what the culprit is, but only time will tell.  I hope to add the CWHO back in on Sunday or Monday, but we’ll see.  He also has this weird rash/breakout/reaction on his cheeks and I don’t know what is causing that.  Allergies?  He has been a sneezy mess since we got here.  Toxins? Could his body be working to get the benzo out for good?  I DON’T KNOW. I’m not an allergist or a dermatologist, or a neurologist.  I should get paid more to be his mother, though.  I know that much.

I got my Colorado drivers license yesterday.  Since I’m now legit, I made the first of 2 doctor appts for the application I’ll need to submit to the state for the Red Card.  That’s what I’ll need to get Brady any of the other non-CWHO oils.  We won’t get this all submitted until Sept, but one of the 2 docs will serve as our guide through the world of marijuana and all the different strains and how much to take and when to take them, when to titrate up, down, blah and blah. It’s all very confusing and I’m sure I’ll be grateful to have her.  I’m like the anti-pot head, so this is a new one for me.  But you know how I love to do my research, so I’m sure I’ll be an expert in no time.  Hell, I’ll probably start growing my own and making it for him myself.  Seriously.  I’m pretty sure my lease agreement said no growing.  Hmmm.

So for now we are resting and giving Brady a few more days to hopefully come out of the seizure funk he’s been in, and if that doesn’t change I’m going to take him to the ped I found here and ask about allergy testing.  The skin thing is driving me nuts.  I also found out the neurology clinic is just down the road from the house, and they’re all part of Denver Children’s network, so I think we’ll be in good hands here.  If not, I’ll take him up to Denver, but the E doc that our KC E doc said to see there is hard to get in with, and we may not have the time to wait if these clusters don’t stop. Two steps forward, one step back.  I’m tired.