Saturday, December 31, 2016

The Year in Review

The more things change, the more they stay the same. In the overall picture of Mira's journey with epilepsy, 2016 was much like a lot of years prior. Fortunately, there weren't any big surprises and throughout her fight with seizures, much of Mira's days did not alter the course from years past. She still battled with the same issues she has always dealt with - uncontrolled seizures, irritability, episodes of dystonia, constipation, and maintaining weight. This year was no exception. Every day is an adventure with Mira and nothing is predictable.

I have to go back and look at all of my posts from the beginning of the year, just to jog my memory, as things are such a blur by the time December rolls around. Ironically, we are experiencing the same things we were almost 12 months ago, just in a slightly different fashion. The discovery of how poor Mira's vision was, was perhaps one of the biggest events of the year. Our relationship with the ophthalmology clinic at Children's Mercy has now been established, as we will be monitoring Mira's vision much more closely now. We have several appointments in early 2017, including an exam with ophthalmology, and another with a vision specialist through the school district, who offers an annual clinic for children with special needs.

Mira had numerous bouts with heavy seizure days - times when she either had multiple seizures, or dystonia, or both at the same time. A few of those days were particularly worrisome, where she was having countless seizures at home and at school, all within a short period of time. Perhaps one of the worst experiences Mira dealt with this year though perhaps, was when she had a UTI, back in February, where she was dealing with some serious pain. We had never heard her cry and scream with such force as we did then. Fortunately, it came to pass fairly quickly with antibiotics, but it sort of set the pace for the beginning of the year for her having a lot of seizure-filled days and dystonic episodes, especially in February and March.

A biopsy in May ruled out yet another potential diagnosis for Mira - the fact that she doesn't have NCL or any type of storage disease that might have been discovered. The actual procedure I think was the most traumatic part for her, but she was able to get through it ok. We have tried to minimize the amount of testing Mira has been subjected to and the biopsy seemed to be one of the more invasive tests she had to go through lately - she has had numerous EEGs, MRIs, spinal taps, and countless blood draws, but all of these are occurring much less frequently in the past 5 or 6 years. I can't remember the last EEG she has had, which is probably a good thing.

I can assure you that there are a few things we will leave behind in 2016 and at the top of the list are bananas. After Mira's horrible constipation bout with a single banana, we have all been forever scarred by the trauma, that one horrible piece of fruit can bring. Bananas are now off the menu. A couple of weeks ago I would have thought that we would finish our the year having not seen or heard the toy, as we nearly went through all of 2016, before giving it back to her. So far, it has been our savior, redirecting Mira's irritable disposition, albeit only temporarily sometimes, but enough to give everyone a break. Tonight in fact, she played with it for a solid hour while we were out at a friends' house, helping Mira combat some of her frustration and fussiness up until that point. She has been having some tough afternoons and the toy helps reel our sanity back in. One final issue we hope to leave behind in 2016 is Mira's relentless eye rubbing. We started off the year with her constantly rubbing her eyes, to the point where they were raw and red. For some reason, the amount of eye rubbing has reduced to almost zero over the past few months, even in the bright sunlight. Glasses on or glasses off, daylight or evening, it all seems to have disappeared - we haven't made any changes so I am unsure why she has stopped, but am hopeful that we can permanently leave that behind in 2016.

It's funny to read my last post at the end of last year. My mantra still holds true - the more things change, the more they stay the same. 2015 was the year of simplification and we did exactly that, but ironically, not much has changed with Mira's seizures or irritability in 2016. It didn't matter what we did or didn't do throughout these past twelve months, as nothing really seemed to change dramatically. I have no idea what 2017 has in store for us, but I am sure it will undoubtedly be an adventure. I wanted to thank everyone out there that has continued to read Mira's blog over the past 10 years. I hope everyone has a wonderful, prosperous, and seizure-free 2017.

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