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.

Monday, December 26, 2016


Mira has been having a ton of myoclonics and episodes today - she had a cluster of myos this morning (look a lot like classic infantile spasms, minus the eye fluttering) that went on for 30 minutes. We haven't seen that activity for a few weeks, so it caught us off guard a little. She continued to have a lot of startles throughout the day, at all times, with no real pattern to anything. Her exposure to the toy has been minimal today, since we had been seeing so much seizure activity. A few times today, she startled so hard that she knocked the bottle out of her mouth and sent it flying across the floor - it scares the crap out of me when that happens, and makes us walk on egg shells every time she has something to drink. We went for a walk this afternoon, which Mira was super excited about, but she continued to have these episodes while we were out - arm stiffening, going completely rigid, and favoring her left side, by slowly locking her position in that direction - her arms completely extended and completely unresponsive. These episodes happened all day long, with no apparent trigger. The two times she actually had her toy in front of her, we didn't see anything, so we don't think there was anything sparking seizure activity with her as a result of playing with it. If there's one thing that has been consistent about Mira's epilepsy, is that it has always been inconsistent - you never know what to expect, every single day.

Sunday, December 25, 2016

Merry Christmas!

Our day started at around 5:45am, when both of the boys woke us up, ready to open presents! Not surprising - Eli has been wanting to build his own computer for months, earning and saving money so he can slowly buy all of the parts he needs. His hope was that Christmas was going to get him one step closer to that goal, by hopefully getting additional cash to buy more parts. Jonah
has been talking about Minecraft toys and telescopes for a while as well. They both were not disappointed, as Santa delivered the goods this year. Mira got a ton of outfits, a new winter coat, a new Gap zip up jacket, and a huge pink cozy blanket. This is the third one that we have bought for her, since the boys tend to take her blankets and run off to their respective rooms with them. This one is all hers.

Mira has been having a decent week, up until today, where she became irritable most of the afternoon. The toy helped alleviate some of her crankiness, but her time with it has been fairly limited. She seems to be interested in it for less and less time - she tries to shove it off her tray after less than 10 minutes each time. We have been on quite a few walks, including today, to help break up the day and to take advantage of the spectacular weather. We went from below zero temps last week, to 62 degrees today - it has been crazy around Kansas City and the midwest for that matter. Overcast and breezy for Christmas made it feel like Northern Florida.

We won't be doing much this week but relaxing after a great day with family, cooking, and presents. Hope everyone had a Merry Christmas!

Sunday, December 18, 2016

Cautiously Optimistic

Mira woke up in a great mood this morning, as opposed to yesterday, where she was wailing and crying, most likely since she wasn't feeling well. Today was much better. She was energetic and smiling a lot all day. She kept clutching at her sweatshirt and her pants, pulling on them at random times throughout the day, but otherwise, she has been acting as she always has. Sarah and I have been cautiously giving her the toy to play with - only 2 times today, each for about 20 minutes. On both occasions, she was the one who wanted to stop playing, by trying to push it off the tray. Yet, after watching her both times, she didn't have a single twitch or jerk. However, she did have a few spasms in her bed, unrelated to her playing with the toy. I'm being cautiously optimistic about her having it, so we will continue to closely monitor her every time she is interacting with it.

Needless to say, I went on a quick hunt to have a backup toy for her and was extremely fortunate to find 2 of them on Ebay, both at a reasonable cost. I snatched them up quickly. We are talking about a toy that was produced only for one year, back in 1999, so trying to find this particular toy is a challenge. We have at least 7 or 8 of them at home, and all but one of them are non-functioning. The speakers go out, the board gets fried, or they just wear out. I felt I was extremely lucky yesterday, finding a few, 2 of which were listed under $50 each, when I saw a third one here on Amazon, for the ridiculous price of almost $300! There is some seriously overpriced ones out there, so I will continue to keep my eyes out for when the reasonable on come around.

Saturday, December 17, 2016

The Return of the Toy

Sarah and I have been debating 'the toy' as of late. As you may recall, we had to take Mira's toy from her about a year ago, as it was provoking relentless seizures every time it was in front of her. We felt terrible having to keep it from her, as it is the only toy she has consistently interacted with, and the fact that she had such a long history with it. Unfortunately, it slowly became a seizure trigger for her late last year, to the point it was directly causing her to erupt into a tonic-clonic the final 3 or 4 times we tried it. We have been talking about giving it back to her for the past few weeks, simply because we think she is really bored around the house. While she hasn't been in an irritable mood lately (the past 2 days being an exception because she is congested and has a fever) we felt that her options for entertainment are very limited, especially with the weather being so bad outside. It's currently 7 degrees, snowing, and the temperature is supposed to dip down to -3 degrees tonight. Obviously, going for a walk outdoors isn't an option and with Christmas vacation just around the corner, it inevitably is going to struggle finding things for Mira to do around the house. Thus, we tried the toy this afternoon, after a solid year of not having it in front of her.

Watching her like a hawk, we strapped it on her easel, slid the toy in front of her, and turned it on. It was like she had never missed a beat with it. She immediately grabbed the corner 'bulb', started smacking it with her palm, and pressed her face right up into it. Now that she has her glasses, hopefully she can actually focus on it much more easily. For the first few minutes, she would not take her eyes off of it. Her mouth was wide open, her expression (pics above) was priceless. She interacted consistently with it for a solid 20-30 minutes and didn't have so much as a twitch. No eye-fluttering, no seizures, no myoclonics. We watched her the entire time. It was a huge relief, but it certainly doesn't mean she won't have one from it in the future. This was only the first reintroduction - we put it in front of her again late this afternoon and she was equally enthusiastic about it, although she became bored after 20 or 30 minutes, and tried to shove it off her easel. Just like old times.

Needless to say, we are going to take this slow, as Sarah and I have some trepidation about it still. It makes us nervous with her in front of it, knowing what she went through late last year with it. Unfortunately, since last year, another one of the toys stopped working, so we are down to our last functioning toy. We are going to need to be on the lookout for a backup. If anyone spots one on Ebay or anywhere, please let me know!

Thursday, December 15, 2016

Great Stretch, Minus One Bad Day

Mira has been doing great this past week, with the exception of one rough day last Friday, which I will get into later. She has been in a positive mood, with a minimal amount of fussing, which is very odd for her to have such a long stretch of non-irritable days. Mira has been getting up full of energy (and lots of dragon noises) and we haven't been seeing any strong myoclonics in the mornings either. She continues to be surprisingly calm and quiet in the evenings, often taking long naps once she is off the bus and back in her bed. Her appetite has been very consistent - she seems to be enjoying the meal plan we have her on and she certainly appears to be putting on some weight, which is fantastic. Really, the only thing that we seem to be battling these days is the weather. It has been bitterly cold the past week or so, with temperatures hovering in the mid to low teens most days. It's supposed to dip into the single digits over the weekend, which means coming up with some creative things to do indoors. Mira has some super sweet pink mittens, so at least she can be fashionable in the cold.

In terms of her bad day, Mira had a multiple seizure day last Friday, having 2 at school and another one later in the evening. It completely wiped her out last weekend, where she was clammy, rigid, and lethargic (picture above), which is a fairly typical bout of dystonia and/or just being post-ictal from all of the seizure activity. However, those were the only seizures she has had in the past 10 days or so - again, her myoclonics have been negligible and she hasn't had any 'altered' days, other than the one last Friday.

On a side note, our van is slowly falling apart. Mira's side door a few days ago and is unable to fully open, which means we have to switch her car seat to the other side and have Jonah go through the same side. I absolutely detest reinstalling and adjusting Mira's car seat and it always feels like a major undertaking. It has so many attachments and belts, that it ultimately ends up being a 1-2 hour driveway event, at a minimum. Seeing as it's so frigidly cold, I might be trying to pull the van into our tiny single car garage to try and work on it. The door has been malfunctioning over the past week, and combined with the 7 month old battery dying last weekend, the 10 year old van is showing its age. We think all of the power door issues on Mira's side is what is draining the battery, so we will have to get it looked at next week to try and get it resolved. Add it to the list of things we weren't expecting to shell out money for over the holidays.

Tuesday, December 6, 2016

The Parental See-Saw

Parenting has a habit of being a ride. A bumpy, often tumultuous ride at that. The only analogy I can come up with a that it's like siting on a see-saw. The day-to-day activities of doing the same, seemingly predictable, motions - up and down, never really side to side so much. Night and day, Work and school. Driving back and forth. Preoccupied with the thousand other things you are trying to manage. Sometimes, you aren't paying enough attention to the person on the other end of the see saw, and they push their legs more forcefully off the ground, so you will take notice, as your rear end slams against the soil on the opposite end. Other times you are sky high, inches away from sliding off the seat, the threat of plummeting to the ground, ever near. You have to be constantly aware of everything that is happening on either end of that board, as one simple move sends everyone flying.

It has definitely been a see-saw the past week or so around our house. Mira has had some very positive moments, where she is doing constant 'dragons' and is as happy and energetic as can be. She has also had some fussing spells that seem to last for hours. Jeckyll and Hyde. Sarah and Jonah both have been hacking at a cough that won't seem to go away, with Jonah adding an on and off fever for the past week or two. Up and down. Eli has had his moments as well - typical teenager issues that we all remember dealing with at one point or another. All the kids have been taking a turn on the see-saw with Sarah and I tag-teaming it on the opposite side - sometimes it feels like all three of them are pushing off the ground as hard as they possibly can, just to see what happens. The parental see-saw is exhausting.

Mira actually had a very positive day at school. She was very attentive, tolerated the Kid-Walk for a solid half-hour, and was smiling all day. Her patience ended on the bus ride home, where the driver and para said she wailed the entire trip back. She did the same exact thing yesterday. By the time I got home from work, she was again all smiles - she even let loose a few 'dragons' during her bath. Her bus showed up early today, which I was unprepared for - this after being 15 minutes late yesterday.

No one can seem to find an equilibrium this week. The see-saw ride continues.

Thursday, December 1, 2016

The Thanksgiving Drive

Last week we made our second trip out to Kentucky, with a stop on the way out in St. Louis to visit my family for the evening. Embarking on a road trip or spending any significant amount of time in the car with Mira is always a gamble. We never know what the highway will bring. During our neurology visit the week before, our neurologist recommended a small dosage of valium while we were on the road, to help ease Mira's anxiety in the van. After our first trip out to Kentucky last summer, I think all of us lost a little bit of our collective sanity, having to listen to Mira's crying for a solid 225 miles on the out to KY. It was painful, thus we felt a little more empowered this trip, having some ammunition before we embarked on a 9-10 hour excursion in the car.

We weren't very optimistic heading out toward St. Louis, as we didn't get 3 miles from the house before Mira started crying. We stopped, fueled up, and gave Mira a dose of valium, which didn't seem to do too much - she continued to cry off and on for most of the ride. Tolerable, but certainly not ideal. We spent the evening and headed out early the following morning, with 4 hours under our belts and another 5+ hours to go. Mira did a little better, but ended up crying, somewhere around Louisville, and continued pretty much until we got out of the van. Once she was inside and able to stretch her legs, she was in a much better mood. In fact, she was extremely happy for the rest of the afternoon.

However, for the remainder of our visit, Mira was very irritable. Every day, Thanksgiving included, she was just not happy and nothing would keep her happy for more than a few minutes. Just one of those roller coaster weeks. We had to split up on a few outings each day - I ended up taking Mira back to the house on several occasions, while the rest of the crew went out to lunch. Mira would have not lasted more than a few minutes in the restaurant, which makes a stressful outing for everyone. She wasn't much happier once we were back out of the van either, so we were never sure what was really bothering her.

Regardless, we had a pleasant Thanksgiving break, loading up the van early Sunday morning to head back to KC. This being only our second attempt at driving straight through for 9+ hours, I was frankly cringing at the prospect of having Mira's irritable temperament continue the entire drive back. Much to everyone's amazement, Mira went an entire 600 miles without making a peep! She was truly amazing - she was wide awake and didn't sleep a wink for the drive, but rather was content just looking out the window or just happily enjoying the ride. She did break down that last 20 miles, but I was in shock that she went solid for almost 9 hours without so much as a whimper. We did give her a dosage of valium before we left KY and another about 5 hours into the drive, which seemed to do the trick.

Unfortunately, she has been a train wreck most of this week - she has been irritable every day since, finally settling down today and has become extremely sleepy this afternoon. With all of the travel and visits, her sleep patterns have been thrown off and I think she is just worn out. Ironically, in terms of seizures, we haven't seen any the last week to ten days. She hasn't been having any myoclonics in the morning and certainly no tonic-clonics to speak of, at home or at school. With all of her fussy days, we typically see a spike in seizure activity, but again, it has been eerily quiet in terms of seizures since my last seizure post back on November 9th.