Sunday, June 28, 2015

Happy Birthday, Mira!

Mira turned 10 years old today and frankly, it hasn't really sunk in yet. Over the past few weeks, I have been going back at looking at her pictures and reading old posts, which brings back a flood of memories, both good and bad. It's hard to believe that she has been battling seizures, nearly every day for almost 10 years and that we, as a family have been on this journey for as long.

There is no denying that birthdays are always difficult. All of the scenarios and questions that spin through your mind, most of which are pointless to ask yourself, but it's unavoidable at such a milestone. What is she never had seizures - what would her life be like? How different would our lives look? Can Mira understand us when we are talking to her? Will she ever be able to communicate? Will her situation ever change? I cannot help but imagine the 'what if' scenarios and not just on her birthday, but today just compounds all of the wondering and questioning.

Unfortunately, Mira had a pretty rough birthday. She started off having a huge tonic-clonic seizure about 8:30am, right after breakfast. While not unusual for her to have a seizure early in the morning of course, yet what was atypical was what happened afterwards. About an hour or so later, after a long post-ictal period/nap, she woke up and had another 'event', which basically looked like another big seizure starting to unfold. Not a full-blown seizure, but definitely something seizure-related. Her arms stiffened, her breathing stopped and/or was altered, and her feet turned inward while her entire body went rigid. She had a handful of these episodes over a 45 minute period.

We had decided to go out for lunch, as Auntie Aura and the boys were in town, so we packed up the van and headed out. Mira again had another 2 or 3 of these episodes in the car on the way. About another 45 minutes later, while we were partially through the meal, she started having these episodes, repeatedly, closer and closer together. Earlier in the morning, they were about 15-20 minutes apart, but as time went on, they were happening every 30 seconds. It was at that point, we stopped, packed up early and went directly home. She continued to have more clusters of episodes on the way home, which was enough for us to feel like we had to break the seizure cycle with Ativan (Diastat).

Before I started writing this post, I had to go back and determine when the last time we had to administer Diastat and as it turns out, it was almost 8 years ago. This clustering of seizures, one on top of the other, is something we have not seen since then either, which is why we felt it necessary to break the seizure activity. When we called neurology the last time this happened 8 years ago, they told us it sounded like a complex partial status seizure, which from what I remember, was identical to what we saw today. It was disconcerting then, as it was today.

Of all days for this to happen, it had to be today. The Diastat completely knocked her out for most of the afternoon. On a positive note, it stopped the clustering and all of the seizure activity. We didn't see any seizures the rest of the day or this evening. Of course the terrible part is, this was how she spent her 10th birthday.

Saturday, June 27, 2015

Rough Days

Mira had two big seizures yesterday, which pretty much set the pace for the entire day. She was irritable all day and her fussiness had bled into today. Not a ton of seizures today, but certainly a lot of discomfort and irritability. We went and had lunch down south (BBQ at Oklahoma Joe's, now just called Joe's) and she was up and down. We managed to get through about 75% of the meal before she really started ramping the volume up to where I had to leave the restaurant with her. The best we could hope for, with all of the drama today. Afternoons seem to be worse for her and they always have - today was no exception. Another crying and wailing episode that lasted almost an hour.

Thursday, June 25, 2015

The Return of the Night Owl

Mira turned into a night owl this evening. She had a great day at school - in a positive mood, engaging with her toys, and overall, had a fantastic day. She has been fuss-free all afternoon, which is very uncharacteristic for her and after yesterday's late afternoon wailing yesterday, we are pleasantly surprised she is in such a good mood. You never know what the day will bring.

After dinner, she seemed like she wanted to go to bed, but simply chilled out for awhile once actually in her bed, but never fell asleep. So we put her back in her chair about 7:45pm and she has been playing with her toy, consistently and without any seizures. She is also babbling up a storm and vocalizing constantly while slamming her toy. She is just full of energy today and wants to stay up as late as possible. It's now almost 9:00pm and she is still going strong with the toy.

Wednesday, June 24, 2015

A Hot Swimming Mess

Mira had her first swimming experience in the pool in years today and to say she was excited is an understatement. The second she was in the pool, all arms and legs were going haywire, splashing up a storm for the first few minutes. She eventually toned it down, but at first, she was very excited to be in the water. When Mira was much smaller and easier to handle, she had aqua therapy every week, in addition to visiting the pool every so often in the summer. Over the past few years, it has become increasingly difficult to get her in the water, as she is 75 pounds and very tall. The therapy she is getting over the next five weeks is fairly short, but we hope to get her into some weekly classes, pending how this session works out. Each session now lasts an hour and either Sarah or I has to be in the pool with her the entire time.

After all of the excitement in the water today, Mira took a sizable nap and then became very agitated and irritable. She woke up, drank at least 4 or 5 bottles over a 45 minute span, then cried through dinner, drank 2 more bottles and continued to cry until she was back in her bed. She was not happy anywhere but laying down, so she went to bed early and crashed hard. An exciting, hot mess of a day that completely wore Sarah out too.

Monday, June 22, 2015

Crabby Days

Mira was up and down this weekend, but mainly down. On Saturday, she had started getting fussy off and on, but Sunday and today, she kicked it into overdrive. She had one of those days where nothing seemed to keep her content for more than a few minutes at a time. She would drink and eat, but showed no interest in her toy after the first 2 minutes. Mira had a fair amount of intense myoclonics throughout the day too. She spent a solid 30 minutes today wailing in her bed and in her chair at one point. After dinner, we decided to go for a walk down to the store, which took her out of her element for a while. She seemed to enjoy the walk and with the temperature up in the 90's, she was drained by the time we returned home. Hopefully, tomorrow will be a better day for her.

Friday, June 19, 2015

The White House vs. My House



After literally hundreds of emails and months of pleading to our current administration, I finally received a statement from someone, who can only be named as 'The White House'. I am under the assumption that since they receive thousands upon thousands of emails, letters, and solicitations a day, the only way to respond to even a fraction of this collection of correspondence is for an intern to develop a poorly formatted boilerplate letter, based on a particular issue, that involves an easily inserted header, with the sender's name, to give it that 'personalized feel'.

That being said, I realize that 'The White House' has most likely never read any of my emails. Not a single one. Every letter, which went into lengthy detail regarding Mira's failure to respond to 22 different pharmaceuticals, her ongoing daily battle with a catastrophic epilepsy for the last 10 years, and everything related to the accessibility of viable treatment options for her, including cannabis, most likely went unnoticed. I suspect rather, that they track the number of emails written from a particular address and flag them as a possible threat or nuisance, depending on the issue it is filed under.

Perhaps it involves some governmental software that scans all email correspondence to generate a formulaic response, to give the illusion that they are exercising due diligence and 'responding to the people'. Whatever the case, the response received from 'The White House' was seemingly lumped into all other requests regarding the legalization of recreational cannabis, which was not my original intention. This further reinforces the assumption that 'The White House' isn't too concerned with the actual content of my letters or for that matter, interested in making any gesture to the reason you drafted a letter in the first place.

What is truly disturbing though, is the content. A completely generic, spewing of half-truths, generalizations, and frankly, broadly based banter, all seasoned with a familiar lathering of political rhetoric. It's a piece template stock material, straight out of the Politics 101 Handbook 'How to Say Something without Really Saying Anything'. In a sense, it's verbal diarrhea.

It states '...the Federal Government has been funding and reviewing studies to better understand marijuana's effects on individuals, public health, and safety', which roughly translates into: 'We already established (generated) those effects and we have been misleading the public with such propaganda for decades. We continue to capitalize on the prohibition of cannabis, as it funds our prison and pharmaceutical lobbyists' agendas, which in turn generates massive amounts of capital, to ensure our political careers remain viable and intact'. Do not be misinformed. The cycle of incarceration is a business, as is the pharmaceutical industry. Both exist to create customers, not rehabilitation or cures.

The letter also states 'A considerable body of evidence shows that marijuana use, especially chronic use that begins at a young age, is associated with serious health and social problems.' Unlike alcohol, which is certainly of no concern to minors, yet the predominant message plastered on every other billboard, from Sacramento to Boston, glorifies the socially acceptable positives of drinking. In terms of the 'serious health' problems associated with cannabis use, the current tally of overdose-related deaths from cannabis are still zero. It is also well-documented that every living human on this earth has an endocannabinoid system within their body, which CBD (integral to the plant of course) has the potential to target said system, therapeutically. Someone should explain to 'The White House' that any spin on the negative health aspects of cannabis is never a convincing argument, in fact, it's insulting to insinuate that the public needs to be socially babysat because they are incapable of using good judgement.

Some of the banter in the letter is comical. It states '.....we share public concerns about ensuring limited Federal enforcement resources are dedicated to pursuing our highest enforcement priorities, such as the preventing the distribution of marijuana to minors...........'. If this is the public's definition of highest and best use of law enforcement, which I seriously doubt it is, we need to reassess our priorities as a society. It may be the government's priority, from a consistent revenue stream standpoint (see above paragraph) but introducing a 17 year old to the vicious cycle of incarceration, for the possession of a joint, should be at the other end of the governmental 'highest enforcement priority' spectrum.

I guess the kicker in the letter was the last improperly spaced paragraph, which reads 'neither the FDA nor the Institute of Medicine have found smoked marijuana to meet the modern standard for safe and effective medicine for any condition'. There are so many things wrong with that statement, I truly don't know where to begin, but I will give it a whirl.

First of all, cannabis is only rarely used, therapeutically or medicinally, through smoke inhalation. It is most commonly used in the form of cannabidiol, which is basically cannabis oil extract. Through digestion, the CBD and THC content is made more readily available to major targets within the endocannabinoid system, particularly the brain. The fact that the letter omits this method could just be chalked up to a simple political spin - it's not what you say, it's what you don't say.

Second, the FDA doesn't regulate much of anything regarding what constitutes 'safe and effective medicine' as the FDA does not monitor pharmaceuticals, vitamins, supplements, or numerous other forms of medicinal options on the market. Which begs the question, what does the FDA actually do? Ironically, it regulates tobacco products, which have proven to be have horrific side effects on nearly every internal organ it comes in contact with, yet tobacco products are available to anyone  of legal age who chooses to take up smoking or snuff. So why should anyone give a shit whether the FDA fails to meet 'the modern standard for safe and effective medicine' when it knowingly allows the public to introduce an unlimited amount of carcinogens and toxins into their bodies via a 3 3/4" round stick? I guess that warning on each pack does the trick and nullifies any negligence on their part.

As for the Institute of Medicine, which is basically a non-profit consultant to the Federal Government, it does zero hands-on research related to cannabis, but rather relies on member's participatory submissions on research in their particular area of expertise. When that expertise comes from members like Dr. Eric Voth, who had heavily influenced past IOM reports regarding the efficacy and societal impacts of cannabis, it basically puts the IOM in the position of acting as a middle-man to the government - a consultant who relies on other consultants' agendas and initiatives, packaging it all up into an annual report. No bias could possible be extracted from that scenario (as my sentence drips with sarcasm......)

I feel insulted when I get a response like I received today. It's a very bureaucratic way of saying: we received your concerns and we will run your response through our PCTRG (Politically Correct Tactical Response Generator) and print it out for you. Now go away and stop asking questions.

Yet, I still cannot get 'The White House' to answer my simple questions. Why is the government dictating what we as a society decide to use as medicine? If cannabis has no apparent medicinal value (despite the Department of Health and Human Services possessing a patent on cannabinoids as neuroprotectants) then what is the harm in someone pursuing it as a viable treatment option?

Most importantly, why is 'The White House' making medical decisions in my house?

Thursday, June 18, 2015

Happy + Wound Up

video

Mira has had an energy spike the last few days - staying up really late, to showing a whole lot of extended interest in her toy. For a few evenings this week, Mira has stayed up a good two hours past her usual bedtime, enthusiastically playing with her toy, enjoying racing around the house in her chair, and/or going for a walk around the neighborhood. This morning she was wide awake and ready to go - she played for about 30 minutes in her chair, then wanted back in bed. She ended up having a ton (at least 50+) strong myoclonic seizures in her bed, just one after the next for the next 10 or 15 minutes.

She had some brief fussy spells this afternoon, but was also stimming a lot with her toy. When she gets overly excited, we tend to see a lot of arm-flapping, ear-rubbing, and hand-wringing, as shown in the video. We don't see this too often, except when she is either really excited or extremely upset. Thankfully, this episode was on the positive end of the spectrum.

Again this evening, she stayed up very late - she played in her room with the lights lowered, so she could see the lighting contrast on her toy, which she was fascinated with for a solid 45 minutes. No seizure activity this afternoon or evening, just happiness.

Tuesday, June 16, 2015

15 Years

As Mira is approaching her 10th birthday in a few weeks, Sarah and I celebrated our 15th wedding anniversary today. We realized that 12+ of those years we have spent raising three children and almost 10 of those years, has involved raising a child with significant special needs. It sounds like such a cliche, but it's been a long road with our kids, especially for Mira.

Any involved parent will tell you that raising a child is a lot of work. Parents (or a parent) who are a raising a child (or children) with special needs might tell you that it is even more difficult. The best way I can explain it is that over time, it becomes your sense of 'normal'. It happens almost unexpectedly and it certainly doesn't happen overnight. It simply becomes your life. I can tell you this. Sarah is an amazing person - she is the most compassionate, logical, and caring person I have ever met and I am honored to be able to raise a family with her.


Sunday, June 14, 2015

A Bad Way to End the Weekend

Mira's day started off great this morning, but ended pretty poorly. We went for a walk this morning down to the village to get something for breakfast - Mira really enjoyed the fresh air, despite the humidity and rising temperature. She was giggling a little, kicking her feet, and enjoying herself quite a bit. We were gone about an hour or so and I put Mira in her bed to rest for awhile, as she seemed worn out from all of the activity. She took a short nap, but then was awoken by a huge seizure, which I heard all the way from the kitchen. The grunting sound she often makes as a tonic-clonic seizure is unfolding always makes me cringe - I have heard it so many times. From there, the day seemed to take a downward turn.

After the first seizure, Mira had another intense one, about an hour later, in her chair. The rest of the day, she was completely lethargic and altered. Her hands and feet were ice cold, but extremely clammy. Her entire body temperature was out of sorts - in her bed, she was drenched in sweat on her back, but her hands and feet were always freezing cold. She was also very unresponsive - just staring into space, periodically shifting her gaze, but at nothing in particular. She showed little interest in her toy and when she did, it provoked more seizure activity. I tried running an errand with her, hoping the change might snap her out of it, but she continued to be very limp, slouching over in her chair and drooling a ton while we were out.

Her situation did not change much this evening. She slowly drank a few bottles for dinner and we tried racing around the house in her chair, but she continued to have zero energy. The slouching and staring also continued until bedtime.

Friday, June 12, 2015

The State of Insanity - The Final Chapter

Compared to the past two days, Mira was much more subdued today. She was still fussy, but certainly nowhere near to the degree of crankiness she experienced mid-week. Just like yesterday, she took a sizable nap this afternoon, then was fairly up and down the rest of the night. She had a continuous string of myoclonics throughout the day, but fortunately, no major tonic-clonics.

We are going to try and get out of the house as much as possible this weekend, despite the rainy forecast. Mira has enjoyed getting out and going for walks or out of the house at least, when we can. So the fact that we have a number of errands to run tomorrow is probably a good thing.

On a political side note, the Kansas House folded at 4:00am, succumbing to repeated threats by our very own sociopathic governor, narrowly 'accepting' the largest tax increase in Kansas history. Another notch in a historically lengthy gut-punching to the working class of the state - higher taxes on the low and middle-income citizens and continued tax breaks for the super-wealthy. Kansas continues its economic spiral into the abyss, thanks to 4 years of awful legislation and truly embarrassing 'leadership'.

I know I tend to digress into the current state of affairs of Kansas, but you can't imagine the frustration we feel as citizens of this state. I feel terrible for our children and the legacy that is being established for them - a reckless agenda initiated by one single person. Poor policy, threats, and greed have completely taken firm grasp in Topeka and will seemingly never relent, until public education, infrastructure, and the working class are in complete ruin.

There is little comfort in knowing that the fiscal ruin will continue for years, even if a tidal wave of change crashes down in the next election. Seeing how voter turnout continues to decrease and the will of the people is continuously ignored, there is little hope that much will change even with an upheaval in the capitol. Brownback is a malicious and wreckless sociopath, bent on serving only his special interests and deep-pocketed lobbyists. With additional deep cuts to education and services for the disabled, the ones that will ultimately suffer the most, are the children living in this state.

Thursday, June 11, 2015

Back to School

Mira was an absolute mess on Wednesday. If Tuesday was Uber-Crunx day, Wednesday was the sequel, Uber-Crunx 2 - Return of the Crunx. She was crabby all day long and nothing would soothe her. Boredom, upset stomach, hungry, or all of the above - whatever it was, she made it known that she was not happy with pretty much everything. Thankfully, summer school started today, which hopefully will break the cycle of cranky days she is having lately.

Unfortunately, Mira had a couple of really big seizures today - the first one was early this morning as I was getting her ready for school. It wiped her out for about 45 minutes. She had another one this afternoon, right before dinner. She took a sizable nap after school, which probably means she had to do some work in the Kidwalk on her first day. She was fairly quiet the rest of the evening.

The rain is supposed to start tomorrow, just in time for the weekend.

Tuesday, June 9, 2015

Uber-Crunx

Mira was super irritable all day today. Just one of 'those' days - nothing makes her happy, constantly needing a change of scenery, back and forth to bed, etc., etc., etc. By the time I got home from work, Sarah was worn out and she passed the baton to me.

Ironically, one of the first things I did was change the batteries in Mira's toy. Sometimes she will get upset when her toy starts to wear down and she can't hear it as well, so I figured it was worth a shot. It certainly didn't hurt, as her fussy spell seemed to snap as soon as we switched the batteries out and cranked it to maximum volume. That toy can get really loud, but after listening to it for almost 10 years now, we sort of tune it out.

Mira drank a ton for dinner and was finally happy racing around the house in her chair. This after wanting some down time in her bed and a couple of brief fussy spells to finish off the evening. Not a ton of seizures today, but a lot of crying and fussing instead.

Monday, June 8, 2015

Mondays

Mondays are always rough. Just when you think you are getting settled in for the weekend, it's over and it's time to go back to work. Add the fact that our office is doing summer hours, it makes Mondays that much harder. One day down, four more to go.

Mira continued to be up and down today - one big tonic-clonic seizure and again, a ton of myoclonics this morning to boot. She did take a few naps here and there this afternoon, which is pretty average for her. I took the boys to the pool and Mira was able to get some extended toy time while we were out. Sarah said she was content the entire time we were gone, steadily playing. She ended up going to bed late.

Mira needs to get back in a groove, as her summer school program is starting on Thursday!

Sunday, June 7, 2015

The State of Insanity

Mira has been up and down this weekend - periods of quiet enjoyment, mixed with moments of irritability. Mira's seizures have been consistent as well - she is averaging about 1-2 intense tonic-clonics a day, with her usual myoclonics scattered throughout the day. Overall, a typical weekend for Mira. The weather has been decent - little to no rain, but very hot and muggy, especially today where it reached into the upper 80's. Summer is finally rearing its head.

As many of you know, I have been fighting and advocating for some sort of CBD legislation here in Kansas for awhile now. So I watched the Dateline special this evening, most of which centered around three families and their struggles with epilepsy in Virginia. Much of the profile and backstory with Charlotte Figi, I am very familiar with, from the CNN documentaries that aired last year. The CBD-only legislation that has surfaced over the past 18 months with many states, is encouraging to see, because at least it is starting to move in the right direction.

After watching the special, it only highlights how far other states have to go. Kansas of course, elects to operate in a 1940's model, bowing to the continuous pharma-backed propaganda and outright lies perpetrated by puppets like Dr. Eric Voth, who was literally laughed out of California when he tried to spew his string of verbal diarrhea to the masses. Kansas politics and its absurd legislative tactics are truly laughable. The same shortsightedness, the same hypocritical, right-wing religious fear-mongering, over and over again, year after year. It conjures up images of a recently ostracized drunken clown, sitting in the gutter, gnawing on a cheeseburger he just found in the street. Sad and pathetic.

Case in point, as the state continued to struggle with trying to close a $400 million deficit in triple-overtime this weekend, a bill sat directly under their noses (HB2049) that had the potential to create a constant revenue stream, yet the Senate President was too stubborn to let the senate vote on it, sending it instead to die in committee after the House had just overwhelmingly passed it. Ironically, the 'answer' to fixing the deficit was to yet again, raise taxes on the middle and working class - the same approach that got them into this mess in the first place. It's mind-numbing. Thanks to the likes of Senator Susan WagleSenator Mary Pilcher-Cook, and of course, the court jester himself, our Governor, the state's uninterrupted run at being the punchline to every national political blooper highlight show, remains intact.

Insanity is doing the same thing over and over and expecting a different outcome - Kansas is a shining example of why this ancient adage still holds true.

Friday, June 5, 2015

A Much Better Day

After Mira's fuss-a-thon yesterday, she had a much improved day today. In fact, she was fairly quiet all day, even taking a few power naps this afternoon. She didn't have much of an appetite this morning, but certainly made up for it before dinner. She finished off at least 4 bottles within an hour or so, then had another 2 before bedtime. We managed to get out to the park and into the swing, which Mira got super-excited about for 5 minutes or so, then the appeal faded as quickly as it arrived. We also spent some time out on the deck and she took advantage of the warm breezes by taking a 45 minute nap. Mira really rebounded today, only having a few brief fussy spells and they didn't last long.

Thursday, June 4, 2015

Fuuski, Fuuski, Fuuski + Other News

Mira has been fussy, fussy, fussy today - I think she is really bored. With me traveling part of the week and the constant rain and mud outside, Sarah and the kids have been trapped indoors. Sarah hasn't been able to get Mira outside to go for a walk, use the swing, or do much of anything with the weather not cooperating. The forecast is calling for rain the entire weekend too. Argh.

Sarah managed to get out to run a few errands this afternoon, which got Mira smiling a bit, as did her bath right after dinner. Other than that, Mira has had a frown on her face all day long. We haven't seen too many seizures, other than a host of myoclonics this morning, thus we are chalking it up to her needing a change of scenery.

We followed up with neurology today with trying to get Mira into a whole genome study at the hospital, which they are still working on. Her application went into the queue a few weeks ago, which to reiterate, is only an application to get into the study and no guarantee that she will be accepted. Neurology told us they would get back to us next week when they know more about her application status.

We also informed neurology of our testing of Mira's blood glucose and ketones. Basically, after monitoring her off and on for a few weeks, at random times throughout the day, her levels never were out of range, for blood glucose or ketones. I think that rules out any chance of her having any sort of glycogen storage disease related issue - check that one off the list.

Wednesday, June 3, 2015

Celebrity Sighting



I just got back in town after a day and a half in Cincinnati and in that short amount of time, Mira went all Hollywood. With a pouty face and sporting some awesome shades, Mira was snapped hanging out in the park. It was hard to keep the paparazzi back, but Sarah managed to fight off the cameras while Mira got in some quality swing time. The reality is, Mira was wearing Sarah's sunglasses because she would not stop rubbing her eyes the second she was out the front door. Even with the shades, she continued to try and frantically rub them, nearly knocking them off her face.