Thursday, December 31, 2015

The Year in Review

I have never been one for resolutions, but at the end of 2014, I did conjure up the idea that 2015 was going to be the 'year of simplification', and ironically, the idea held true all year long. Most of the time, the idea of simplifying efforts and focusing only on the important issues happened as a result of circumstances, rather than a conscious effort that I had to periodically remind myself of at specific calendar milestones.

Late in 2014, I had decided to dissolve my LLC at the end of the year, which I had established back in 2011. Trying to juggle residential projects on the evenings and weekends became very overwhelming at times - with the economy gaining momentum, in turn fueling homeowners' desire to expand or renovate. In our area, the houses are older (typically 50-75 years) and smaller, which has produced a steady surplus of work for me over the years - at times, more than I could handle. The original notion behind the LLC was to do projects for families and patients with special needs, but in retrospect, only a small fraction of work was actually coming from that idea. As the company moved forward, a majority of projects came from non-special needs referrals from past projects, the neighborhood, friends, and family. I ended up finishing off my last renovation in early 2015 and officially closed the books to focus on my day job. This was a huge step toward simplification.

Later this year, I also stepped down from my position on the board of directors for Bleeding Kansas, which is a non-profit group organized for the purpose of getting medicinal cannabis legalized here in the State of Kansas. Unfortunately, trying to devote additional time to the cause had become too much and I frankly felt guilty, for not being able to contribute to the level of other members on the board. There are some extremely devoted people here in the state, who are politically tied-in and driven to see that legalization becomes a reality. I am forever grateful for their efforts and they deserve someone who is capable of devoting as much to the cause as they are.

In terms of medication simplification, Sarah and I have always tried to have a 'less is more' attitude toward Mira's pharmaceutical trials, thus we tried a Lyrica wean at the end of 2014 and into 2015. If you read back in some of my prior posts in January of this year, you will come to realize just how much of a disaster it was. Mira was miserable, so we ended right back where we started. We did however, successfully wean Vimpat over several months in the fall, just finishing it up at the end of Novemeber. We still hold steady with this idea of keeping the pharmaceuticals to a minimum, as Mira has a horrendous track record with them. Ultimately, in exchange for the Vimpat, we are just getting settled in with fluoxetine, which right now, seems to be helping quite a bit. Yet, I do think her recent improved demeanor is a result of a combination of changes, which I will get into later.

The loss of her toy has been the most significant change we have made all year. Call it simplification, call it necessity, or whatever you like, the fact that we had to take her toy away from her permanently, has been bittersweet. It personally makes me sad, when you consider the fact that she has played with that toy nearly every day for the past 8+ years. We have heard that noise and those lights, nearly every day in the house since 2006. We have had a long relationship with it, from hunting high and low on Ebay countless times to snag reserves, to conjuring up new ways to keep it strapped to her easel, to burning through literally hundreds of Duracell AA batteries. In browsing prior posts, it appears we had been flirting with the idea of taking it away, since April of this year. It finally became so overwhelming for her, triggering seizures every time, that it had to be put on the shelf, permanently. Another strange and sadly nostalgic step toward simplification I suppose, but a step nonetheless.

While we did pursue a few testing avenues for Mira, most of it was ongoing and residual efforts from her being in a few genetic studies from years prior. We did move forward and received results from some testing from a CEP (Comprehensive Epilepsy Panel) through GeneDx, which yielded a heterozygous mutation in her TPP1 gene, which is apparently irrelevant, since she still has one functioning gene. I have read that even heterozygous issues are sometimes implicated in epilepsy, even following up with the idea with her neurologist, who is communicating with the genetic specialists at Children's Mercy. I also had the idea, back in February, that Mira should be tested for GAMT and a few other isolated metabolic screens throughout the year. Her levels turned out to be right on target on all of the tests, thus we put all of those ideas to rest as well. Other than routine neurology and endocrinology visits, this year has been fairly quiet on the testing front. Mira is still enrolled in the whole genome study at the hospital, but there won't be anything to report, unless they identify an issue in the future. Should something relevant to Mira's situation surface, they will queue her DNA up for testing, but it is all happening behind the scenes and we would be notified accordingly.

Simplicity does have its limitations. Throughout 2015, we have continued to battle with Mira's irritability and that's not not to say that we have been trying or that we have completely surrendered. I did a substantial amount of research on just irritability, particularly in regards to chemicals in the brain and how they affect depression and pain, which led me to serotonin. I have always had this idea that Mira's fussy demeanor has something to do with a deficiency of some sort in the brain, thus went down a rabbit hole of research regarding Pyridoxine Deficiency (for the third or fourth time) and thought it seemed logical to do a trial of B6, about mid-year. Pyridoxine is supposed to raise serotonin levels in the brain - just one of 150+ different functions in the body. We did see some fantastic results, about 45 days into the trial, where Mira became consistently vocal and animated, even keeping seizures to a minimum. My optimism eventually waned as she slipped back into her familiar neurological patterns. I still think there is something to this however and after discussing options with her neurologist, we opted to put her on an SSRI, which ended up being fluoxetine. It's too early to tell whether it is effective or not, since it has only been a month.

So what has changed over the past year? At first glance, looking at everything at a global level, it is difficult to tell. Mira still has seizures, she is still irritable, and we still don't have any solid options remaining in regards to helping her in either one of those departments. The State of Kansas is no closer to legalizing medicinal cannabis (thanks to one single person, Mary Pilcher-Cook, who is a atrocious senator and a horrible religious hypocrite), which would create a potential avenue for us to explore. We still continue to contemplate moving to a legal state, while serious at times (heavily researching Colorado and even taking a trip out there) to half-joking comments (such as, 'f*^k this, let's just pack up and move everyone to Los Angeles so we can all be outside most of the time') when Mira has a rough week. I still continue to read, research medical options and ideas, write the occasional letter to The White House, and hope that something, someday, might help Mira have a better quality of life.

However, if you look at everything on a micro level, Mira has had more good days than bad, at least lately (meaning over the past few weeks). In perusing old posts, I found it alarming just how many poor days Mira has had over the course of the last 12 months - how many wailing, inconsolable days she has had. It has always been a viscous cycle of seizures, sedation, and irritability, but a few things are starting to change, just within the past month. Since we have permanently retired her toy, Mira has had more positive days than usual - I haven't seen any morning myoclonics for the past two weeks, which is something. I am convinced that there isn't one single, solitary medication, therapy, diet modification, or natural remedy that will control Mira's seizures, but rather a combination of changes that will help. Over the past two weeks, we have made some fairly drastic changes with her - removing the toy, fully weaning her off of Vimpat, and added an SSRI. The optimistic side of me is hoping that some magic combination might help - the pessimistic side of me continues to chant a familiar mantra, which is 'the more things change, the more they stay the same'. Only time will tell.

Thank you all for continuing to read and follow Mira's blog. It is nice to know that we are not in this boat alone and that we have wonderful family, friends, and support around the world. I wish you all of the best for 2016.

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