Monday, July 6, 2015

Trainwreck

Mira had an awful day today. She spent the entire day crying and fussing - absolutely nothing would make her happy. I did the rounds with her this morning before I had to go to work, which left Sarah holding the torch for the rest of the day. After Mira's non-stop wailing all morning and most of the afternoon, Sarah was pretty fried by the time I got home, thus she handed the baton back to me. Mira chugged back 2 bottles and her toy seemed to keep her happy, for about 5 entire minutes. She had an appetite and didn't seem like she was in any pain, although it is always difficult to tell with her. Apparently, this back and forth, from her chair, to her bed, with her toy, with drinking in between, had been going on for hours. Sarah said she took a nap in the afternoon for about an hour or so, but whenever she was awake, she was crying. No seizures; no head-drops. Nothing but crying.

She finally came around, about an hour before bed, when we raced around the house in her chair. She giggled some and at least showed a tiny bit of interest by kicking her legs. Boredom? Not sure, as we were running around quite a bit yesterday and she was equally as crabby.

I thought today she might enjoy some peace and quiet, after a hectic weekend and recent late night outings. I guess not. She went to bed early - I have no doubt all of the fussing wore her out.

Saturday, July 4, 2015

The Fourth of July

After a late night out at some good friends of ours, watching a spectacular fireworks display (and lighting many of our own), I figured the kids would sleep in later than usual, since they were up so late. I should know better, as they were all up at the usual time - early. Mira did not do well last night - she tired easily of her surroundings and constantly wanted a change of scenery, which we provided. We eventually laid a blanket down for her in a nice quiet bedroom, but she just resisted and cried most of the time. She finally fell asleep, on the way home.

She has been having a rough time today too - she has had 2 big tonic-clonic seizures, one right after lunch and another before dinner. On both occasions, her toy seemed to be the trigger. Before the first one, she was having a ton of hard myoclonics and I noticed she had really clammy feet and feet, prior to getting her into her chair. I figured it was safe to try her toy again, about 3 hours later, which backfired when she had another involved seizure. We had decided to head out for fried chicken at Rye, which Sarah and I have been to a few times before, thinking that the kids all might be on decent behavior for a nice sit-down meal. I should have know better on that decision too - I was 0 for 3 today, which gives me a .000 batting average.

Needless to say, Mira spent most of the day reclined in her chair, recovering from the seizures. Out at dinner, she has very quiet and reserved, to be expected. The boys could have exercised much better behavior. I don't think Jonah was struggling with the concept of what is appropriate and inappropriate at the dinner table. We survived the dinner and headed home afterward. Neither of the boys were interested in seeing fireworks - I think they were just worn out from last night.

Wednesday, July 1, 2015

Wednesday Swim

Week 2 in the pool proved to be exhausting for Sarah and Mira. The amount of work to get Mira changed, dressed, and actually into the pool, is guaranteed to send even the most in-shape person into sweat mode in a flash. Then there is the hour Sarah spends in the pool with her and of course, then getting her changed out of her sopping wet suit and back into her regular clothes. By the end of it, Mira was yawning and Sarah was exhausted. The weather here has been wet and humid too, offering no relief once outside of the pool either.

Mira has been in a great mood today, even with the extensive workout in the pool. She had a big appetite for dinner and played with her toy for a long time afterward. She even laughed a bit during her bath. She had a modest amount of head drops, most of them have been pretty subtle and thankfully, no big tonic-clonic seizures since the weekend.

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.