Sunday, January 31, 2016

Just One of 'Those' Days

Mira had pretty rough day today. She was in a decent mood when I got her dressed and out of bed, but by the time I had her in her chair, she became very quiet, and slowly started having a big tonic-clonic before we were even in the kitchen. She then had two more additional tonic-clonics, all within about a 45 minute span. All of these intense seizures completely knocker her out. She spent the rest of the day rigid, altered, clammy, and very reserved. We were on the fence about giving her Diastat or Trazodone to break the seizure cycle, but fortunately, she stopped having any involved TCs the rest of the day, at least we didn't see any big ones - just small twitches. We thought we hear her have another TC about 4:00pm, when she was in her bed, but we couldn't really tell. She was awake the entire day, just staring into space and becoming very sweaty and rigid in her bed or her chair. We kept a close eye on her, as we have seen her have many days like this. Her temperature was completely off all day and she was repeatedly clenching her fists so much, that she gave herself a few small blisters on her left hand.

Saturday, January 30, 2016

Glasses Fitting

We took Mira out first thing this morning to get her fitted for some new glasses. We probably spent a solid 45 minutes just trying on frames that might work for her. Because her prescription is so high and she is so nearsighted, frame selection is important, so that she doesn't have an enormously thick edge on the edges of the lenses. Having a thick edge could potentially be distracting to her, so we were limiting ourselves to looking for smaller sized frames that would reduce the size of the lens. We finally settled on the ones she is wearing in the picture above. Minus the logo (they are obviously demo lenses) she looks good in them and the fit works well for her. It was difficult to find a frame that worked well with her nose, ears, and of course, her impeccable fashion sense. Much to our surprise, she not only tolerated having the glasses on, but she didn't try to grab or swat them off, not even once.

Sarah has been looking into some behind the ear pieces that will hopefully help keep them on her face, in the event she tries to pull them off or they slip down the bridge of her nose. Granted, the frames fit well and there is little to no movement on her face - the ear pieces will just be a precautionary measure. The dispensary told us it was going to take up to 2 weeks for them to fabricate the lenses. I can't wait until they are ready - I truly hope they have an impact on her vision and her perception of her surroundings. I can't imagine having everything outside a foot beyond your nose, appearing as a complete blur. So, out of curiosity, I searched online for a vision simulator and found one here. I'm not sure how entirely accurate it is, but I wanted to understand what Mira is potentially seeing, so I tried plugging in her prescription and this is what the simulator came up with:

The image on the left is supposed to be 20/20 vision and the image on the right is supposedly what Mira would be seeing, based on her prescription. The first simulator I found wouldn't calculate her prescription, citing it was 'beyond the range of the simulator'. If this simulator is even remotely accurate, it is frightening what little Mira is able to currently see.

Thursday, January 28, 2016

Fussy Mornings

Mira has been waking up early in the morning full of fuss. The last two times I have gone in to get her out of bed, she is crying and wailing. She instantly clams up as soon as I walk in the room, but she is really wanting to be heard - vocalizing her disapproval of well, something. I think she is probably just bored and wants a change of scenery. Ironically, she is happy for a few minutes after she is dressed and out of bed, but then goes right back in to being crabby again. This has been the routine nearly every morning this week. She is content when she is finally on the bus and the report back from school is that she is consistently happy in the morning, so who knows. Afternoons at school..............not so happy.

We are planning on taking Mira to look at some glasses and frames in the morning. We found a provider in our network, which is conveniently the same optometrist that Sarah and I go to. They have a decent selection of frames and lenses, so we will see what they have to say about Mira's prescription and what they might recommend. We have a couple of other options if this place doesn't work out. We also did manage to get an appointment on the books to see another ophthalmologist in a few weeks at CMH. Hopefully they can provide some further insight into Mira's vision.

Tuesday, January 26, 2016

Planking Octopus

Getting Mira dressed and transferred into her chair in the morning is a workout. We don't need expensive gym memberships to break a sweat, as Mira gives us plenty of exercise every morning. Mira has a couple of patented moves, but her favorite is to extend all of her limbs out as rigid as a board, almost like she is planking. Arms flat and at her side, she almost looks like she is doing some sort of bizarre horizontal dive. She does it mainly when you are trying to get her dressed, transfer her from her bed, or adjust her in her chair. When trying to get her dressed in her bed, she refuses to bend at the waist, so pulling her forward basically slides her off the end of the bed. In her chair, if you unbuckle her lap belt to try and get her coat on or off, she sees it as an opportunity to go rigid, which causes her to gradually slide down to the base of her chair footrests - if she isn't at an incline and/or if you don't have the brake set on her chair, you are in deep trouble, as Mira will end up on the floor in 2 seconds.

In between her planking exercises, Mira likes to periodically squirm her arms and legs in every direction when trying to get her dressed. She will keep her arms stiff for a moment, then suddenly thrust them upward at the most inopportune time and if you aren't careful, you might get punched in mouth. The same goes with her legs - she curls them up at her waist, then will suddenly shoot them out in unison. If you aren't standing off to her side, you will inevitably get kicked (with both feet mind you) straight in the groin. It only had to happen to me once, to know where to properly stand. She also has one other rare move, where she will squirm over on her side, trying to get on her stomach - it doesn't matter where you are in the process of getting her dressed or changed, or transferred - she does not discriminate. I like to call it the 'octopus' move - twist and turn, using every limb and body part you have, to get into another position.

Mira continued playing the role of the planking octopus this morning and stayed in a decent mood until this afternoon. She was super irritable in the van when Sarah was picking up the boys at school, continuing to wail in her bed after she was home. Then she had two enormous BMs and was perfectly happy the rest of the evening. Fairly easy to tell what the issue was today.

Monday, January 25, 2016

Six Weeks Toy-Free

I walked into our the laundry room to grab a box of rice milk for Mira's breakfast this morning, and just happened to glance up at the mountain of extra toys we have sitting up on the shelf. It occurred to me that Mira has not seen or heard her toy for the last six weeks, after having it in front of her nearly every day for the last 8 or 9 years. After she went through some withdrawal those first few weeks, but now that she has become accustomed to not having it around, I feel as though she is better off. She stopped having her consistent clusters of morning myoclonic seizures and while it may be a little difficult to gauge, she seems to be having less altered days, which were exacerbated by myoclonics, which were often brought on by the toy. At least a portion of the seizure cycle has been broken with her not being exposed to the toy every day. Does she still have her irritable days? Of course - (see Sunday's post). Did she have irritable days when she had her toy? Of course. Not much has changed in that department. Overall, is she having less seizures? Possibly. Myoclonics and given way to lightning jerks, yet tonic-clonics seem to be less frequent. Change is happening, in slow, subtle ways I suppose.

Sunday, January 24, 2016

What is a Vacation?

Despite being stuck indoors all day yesterday and Mira being in an irritable mood, the weekend feels as though it has flown by too quickly. It was nice to have some down time after traveling a lot over the past two weeks, but now the weekend is nearly over. I think we all need a long vacation - I'll get to that later. I'm pretty sure I know what was bothering Mira yesterday - I suspect it was neurological in nature. She woke up twitchy, clammy, and tense, not changing much from that state the entire day. All of those signs usually point to seizure activity, so much so, that I was just bracing for a big TC (or multiple seizures) at some point, but it never happened. Just a lot of lightning jerks and spasms. Unfortunately, it was bitterly cold yesterday, so we didn't want to venture out with her into the frigid temperatures, so we just stayed inside.

Today however, it warmed up considerably and Mira and I just got back from a nice long walk. While she was mildly enthusiastic for the first 20 minutes or so, you could tell she just wasn't herself. I snapped this picture after we were inside and coats were off. Mira was curled up in a ball, having this unimpressed and slightly annoyed look on her face - not sure if she was unhappy for having to come back inside or she still isn't feeling 100%. Her eyes were irritated from rubbing them so much - I was having to stop every 30 seconds or so to bring her arms down to baseline, but it was pointless at times. There are certain points on our usual walking route where she will, without fail, start rubbing her eyes - doesn't matter if it is sunny or not, she relentlessly does it. She is still a little clammy and defensive right now, but not near to the degree that she was yesterday.

Seeing as how I have been on the road (during the work week) more than I have actually been home for the past two weeks, it puts all of the workload of raising three kids on Sarah the entire time I am traveling. If I have said it once, I will say it again - Mira is a lot of work, just by herself. Add in two rambunctious boys into the mix and you have a full schedule. In terms of Mira alone, the best way to describe a typical day, is trying to take care of a 2 1/2 month old baby, that weighs 70 lbs. and eats like a 10 year old. Repeat every day, for 10+ years and see how you function. Transfers alone will physically wear you down, while the emotional strain of trying to solve the never-ending question of what Mira's needs are at any given time, will equally deplete one's mental energy. At times, it is routine and just part of a routine day, just like any family would experience. Other days, it is utterly exhausting and overwhelming.

Sarah and I have this recurring conversation about this time every year and 2016 is turning out to be well, no exception. Yesterday we started talking about vacations and how we really never take 'true family vacations*. Every January, we start looking at calendars, considering possible times, places, and scenarios that might make sense for family vacations, as well as a vacation just for Sarah and I. Over the past 5+ years, Sarah and I have only taken a couple of extended weekends for ourselves - a weekend trip to Chicago back in 2010, and another to Denver a few years ago. We were even able to grab an overnight stay in Omaha one night, while the kids stayed with Auntie Aura. We are always incredibly grateful when all of the stars align perfectly and an opportunity arises, where Sarah and I can take some time just for ourselves. It is asking a lot from family and friends to take care of three kids and we can help but feel guilty, knowing how much work Mira can be.

*(It all depends on what constitutes a family 'vacation' I suppose, so just for the sake of trying to illustrate my point, let's say that when I currently think of a vacation, it typically involves my beautiful wife sitting next to me, my family playing in lots of sand and sun, a light northern breeze, large beach chairs with umbrellas, a few Coronas with limes, and absolutely zero agenda for at least three solid days, maybe more).

Much of our annual planning however, tends to fizzle out for various reasons - the obvious ones are money and logistics. Flying with Mira is a near impossibility, for reasons I explained in an earlier post. That being said, our choices are limited in where we can go with her. Airfare for a family of 5 is outrageous as well, so we tend to focus on where we can go as a family by van, which has its own challenges, depending on the length of the trip. Our true full family vacations (see above) don't really happen, again mainly due to cost and logistics. Frankly, we have never tried to do a 'true' vacation with Mira, knowing that taking her on the road could easily turn into even more work than we typically experience at home, since we would be out of our element trying to care for her somewhere foreign to our very familiar environment. We have tactics and diversions at home - we may not have the same luxury on the road.

This is the dilemma that Sarah and I face, every time we have the 'vacation conversation' this time of year. It isn't fair to the boys, it isn't fair to Mira, it isn't fair to Sarah and I as a couple, which ultimately isn't fair to us as a family. We end up taking separate vacations throughout the year, which I suppose, is better than nothing at all. In the past, Sarah and Eli have gone to Los Angeles for an extended weekend. Sarah and I have taken the boys to San Diego and left Mira with Auntie Aura (way back in 2009 mind you) and so on. So here we are in mid-January, still in strategy mode, again trying to figure out how to potentially do some small vacations this year. Eli and I might go to NYC for a weekend. Sarah and I might see if we can sneak in an evening out somewhere. Sarah had a great analogy yesterday of how we function - our family is running a marathon, there are no water stations, and we are carb-loading for this year's annual run.

Friday, January 22, 2016

Happy, Yet Exhausted

Mira has had a strong day at school today finish off the week. After all of the seizure activity on Wednesday, Mira has very quiet and reserved most of the day on Thursday. Today however, her teacher said she was all smiles throughout the entire morning, was focusing really well on objects, and continued to be in a positive and happy mood the rest of the afternoon. She must have wore herself out, because after she was off the bus, she relaxed in her bed for a bit, then fell into a deep sleep for almost 2 hours. We had to wake her up for dinner - she chugged a few bottles, then wanted to go right back to sleep.
On a side note, I spent yesterday in Boston for some meetings and flew back to Kansas City early this morning. When I was in grade school and early junior high, my family moved to a small town in upstate Massachusetts, so we often ventured into downtown Boston for the day, usually ending up around Quincy Market or Boston Commons area. I remember being amazed at the layers of history and the density of the downtown CBD. Years later, as a parent of a child with significant special needs, you tend to have a slightly different perspective than when you were 12 years old. One of the things that immediately struck me in walking around yesterday, was the unevenness and width of the streets. It is a beautiful, historic city, complete with its cobblestone sidewalks and narrow streets. I was however, thinking in the back of my mind as I was venturing the area by city hall, was how difficult it would be to navigate Mira's chair around that type of environment. I couldn't imagine trying to push a wheelchair around in the snow and cold, on very narrow, jagged sidewalks, with the consistent rush of traffic, and sheer congestion of a major metropolitan area. It is urban, it is bumpy, and it is crowded - not the easiest landscape for a wheelchair.

Wednesday, January 20, 2016


Mira had her first ophthalmology appointment today, her first since 2009. While 6 or 7 years may seem like a long time, we have always been under the impression the the crux of Mira's issues have never been visually-based, but rather primarily neurological. She has seizures and that constant influx of neurological static causes her to have a problems interpreting and processing the world around her. She was diagnosed long ago with CVI (Cortical Visual Impairment) which is basically a disconnect with the brain and how it processes information, as opposed to a structural issue that causes problems with vision. The theory has always been this - if you stop the seizures, you allow the brain to heal and make connections, thus, affect vision and processing. We have never been able to gain solid seizure control with Mira, so there really is no point in seeing an ophthalmologist or a vision specialist. Mira has had a few 'monitoring' appointments in the past, when she was on Vigabatrin, as there is a risk of retinal toxicity with that particular pharmaceutical. Other than when she was doing that trial and being followed in clinic, we have only had a routine appointment back since, which again, was back in 2009. We had set this appointment awhile back, but we had to reschedule at least once because of some traveling conflicts, so we were anxious to see where Mira was at. Sarah and I both went to her appointment at CMH and we were shocked at what they had to say. Basically, Mira's is extremely, extremely nearsighted. Shockingly nearsighted.

Years ago, back in my college days, I worked as a lab technician for a company that cut lenses for eyeglass prescriptions, similar to Lens Crafters. While it wasn't a long term career decision, it did give me some familiarity with prescription lenses an the technical precision required in developing a set of glasses. About 90% of the prescriptions for myopia that came through the lab fell into the -1.50 to -3.00 range. About once every few weeks, we might get a -6.00 to -8.00, which would require more attention to detail in the lab with the actual lens cutting, frame selection/patterns, and so on, since of course, the higher the number, the worse the vision, and ultimately for patients with myopia, the thicker the edges of lenses are. Only once, in my year or so tenure working in the lab, did I ever see anything over -9.00. This is Mira's prescription from today:
I was completely shocked when they told us that her vision was so awful. Needless to say, we have a follow-up appointment in a month with a specialist that has more familiarity with CVI and how Mira's vision, seizures, and everything else play into this. They will also look at structural issues and dive into this deeper. In the meantime, we are going to pursue getting her some glasses - this is uncharted territory for Mira and we aren't sure how she will react to having something on her face. It's no wonder she cannot focus on anything more than a foot away from her. Prior to her appointment, I had the idea that we were going to discuss potential avenues with her vision therapist at school, to try out a Tobii device, to see if it would be something Mira might be able to take advantage of. However, this really threw me for a loop. 

On top of this, as we were in the waiting area for her appointment, Mira starting having a string of subtle tonic-clonics. She had 2 or 3 within about an hour - not fully involved, intense tonic-clonics, but rather they seemed to slowly unravel. Definite seizures, but not as involved as her typical ones. She continued to have a few more of these episodes as Sarah was taking her to school. With all of this activity, we ultimately decided against taking her, and Sarah ended up making a detour for home. Mira continued to have an off day - clammy, rigid, and quiet. She was in a decent mood this morning and at her appointment, but she slowly clammed up the rest of the day and was very reserved - not irritable at all, just altered.

Monday, January 18, 2016

Take the Bad with the Good

Mira finished off the weekend strong - she was in a good mood, talkative, and enjoyed some down time this weekend, despite being indoor the entire time with bitter cold temperatures. Both days, she had been fairly quiet and reserved, with only one TC on Saturday morning. Today however, was a different story. Mira was irritable, especially this afternoon, where nothing would settle her down. She has been having a ton of BMs today, which I suppose is increasing her appetite. Sarah was texting me late this afternoon, saying that she had already had multiple BMs right in a row, and that she didn't sound like she was finished. By the time I was home after work, she had yet another, then chugged three straight bottles without blinking, to refuel. After celebrating an extended four day weekend, all of the kids go back to school tomorrow. It's supposed to warm up to a balmy 25 degrees, with snow throughout the day. Is winter over yet?

Saturday, January 16, 2016

Mouthy Mira

Mira has been in a fairly positive mood over the past two days, having some of her usual fussy spells late in the afternoon, but nothing out of the ordinary. She hasn't had any TCs since the 4 she had on Thursday at school. She has however, been having a lot of startle jerks and twitches throughout the day. I suppose the most significant or atypical thing that has been going on, is that she has been producing a ton of drool and can't seem to keep her fingers, hands, towels, and clothes out of her mouth. Mira seems to go through these phases every so often, where she starts drooling, like someone turned on a faucet, combined with putting everything within her reach, into her mouth. We typically use small hand or kitchen towels when we give her a bottle, since the bottles tend to leak a little and often she will end up spilling some while she is drinking. The past few days, when we leave the towel on her lap or under her chin, she grabs it and starts chewing on it until it is drenched. She is doing the same thing with her blankets in her bed. All of her adult teeth have been in for awhile, so I would doubt it has anything to do with that, but it could be something dental related. We also don't see any swollen gums and she isn't fussy when she is doing it, so for now, we are chalking it up to a sensory issue.

Thursday, January 14, 2016

Up + Down

Mira has settled back into her groove of having periods of contentment, mixed with stretches of irritability. Unfortunately, I was traveling all week for work in New Brunswick, just getting back late this evening. It dumped over a foot of snow in one day while I was there, but seeing as how they deal with it all the time there, it was quickly dealt with, with minimal delays anywhere. I was able to fly out this afternoon, with no issues. Sarah had to hold down the fort while I was away in NB, which always turns out to be a ton of work for one person. Mira had some up and down days at school this week, with today being an off day for her, in terms of seizures and level of fussiness. She had been having a lot of head drops and twitches all week, which escalated today, when she had three tonic-clonics (TCs) this afternoon at school and a fourth seizure on the bus on the way home. All of this activity prompted a call from the school nurse, which has started to become a once a month or once every other month routine. Mira had more multiple TC days last year, than any other year prior. We can never anticipate when they are going to happen in succession as they did today - there doesn't ever seem to be a pattern with them.

Sunday, January 10, 2016

Miss Vocal, with a Twist

Mira had a strange day today. It was almost a repeat of one of her days last week, where she woke up making this odd, repetitive moaning sound for the first 30 minutes she was out of her bed, then went into a seizure right afterward. She had a single tonic-clonic about 9:00am and recovered from it fairly quickly and ironically, she was babbling within an hour afterward. She continued to be vocal for the rest of the afternoon, as much as she was yesterday. Then, about 5:00pm, it was like she flipped a switch, becoming very irritable for the next hour and a half. She was really upset and went to bed early, finally settling down once she was back in her bed. I was able to get a few decent pictures of her right after lunch and her bath, when she was calm, happy, and enjoying the light. The sun pours in our living room most of the afternoon, and with clear skies today (but only 10 degrees outside), Mira was able to soak in the sun for a bit, before she started relentlessly rubbing her eyes. We still haven't figured out exactly why she does this so much. Sometimes, it isn't even remotely sunny outside and she will not stop rubbing her eyelids with her wrists, to the point where they are red and irritated. She often rubs her ears in the same motion, but not near to the extent she does with her eyes, thus it isn't a stimming issue, but more of a light/contrast issue.

Saturday, January 9, 2016

Miss Vocal

Mira was talking up a storm today. When I mean 'talking' of course, what I really mean is vocalizing. Mira is non-verbal and non-communicative - she can express when she is hungry or upset by crying, but outside of that, it is often difficult to understand her intentions or needs, when she cannot express them through words or gesturing. This works both ways - when she is vocalizing in a positive manner. it is equally difficult to understand what is provoking it. What was ironic about all of her positive energy today, was the fact that she didn't want to spend any time in her chair. She started this morning by just babbling consistently, all morning long and up until lunch. She did this every time we put her in her bed, but whenever we transferred her to her chair, she stopped talking and started to get a little fussy. So, back in her bed she would go, and within a few minutes, was back to her chanting and kicking in her bed. This pattern continued pretty much all day. She did get a little irritable later in the afternoon, but nearly three bottles later, she perked up and was ready to race around the house. Just your typical late afternoon hunger pangs I guess. Right before dinner was the only time during the entire day, that she actually enjoyed being in her chair for a bit. We raced for about 20 minutes, then more vocalizing back in her bed. Again, I'm not sure why she was babbling so much today, but it certainly was nice to hear her be in a positive mood - she sure had a lot to say.

Friday, January 8, 2016

Strong Finish to the Week

Despite a rough start to the week, Mira slowly got back into the groove of being back at school and finished strong these past two days. She only had one brief fussy spell yesterday afternoon, otherwise has been vocal and active. Mira has been enjoying racing around the house in her chair around dinner time, especially tonight when she became super excited. It has been getting increasingly cold here, with the temperature supposed to drop down in the single digits tomorrow, so it looks like we will be trying to find creative things to do inside for the weekend. I tried putting the headphones on Mira last night, but she didn't seem too interested.

Wednesday, January 6, 2016

Positive Rebound + A Musical Experiment

Despite having a little bit of a rocky start, Mira had a much better day today. She woke up and was a little fussy after breakfast and as she was waiting for the bus, but she got over it pretty quickly. The report back from school was that while she wasn't overly enthusiastic about certain activities, she was tolerant about doing them. She didn't have any fussy spells during the day, nor on the bus ride home, which is more than we could hope for, considering the awful last 2 days she has had. She was very quiet the rest of the afternoon, taking a long nap before finally getting up for dinner. She even enjoyed racing around the house for awhile, which even prompted some babbling and vocalizing at times.

I tried a little experiment with Mira tonight, right before bedtime. I took Jonah's over-the-ear headphones (ones he often uses with the iPad) and put them on Mira, to have her listen to some quiet classical music. I figured Erik Satie piano music would be relaxing enough for her to handle. I assumed she would try pull the headphones off, as she doesn't care for people messing with her hair or have things on her head, but much to my surprise, she kept them on. After she had the music playing, she tilted her head back and started looking around the room a little. I played a few songs for her, maybe 15-20 minutes worth, and she was as quiet as can be. She wasn't really doing much, but she seemed to enjoy it or at least wasn't complaining about it. She let out a few yawns in her chair and quickly went to bed.

Tuesday, January 5, 2016

Rough Day Back at School

I'm really not sure if Mira was trying to tell us that she wasn't ready to go back to school after being off for several weeks, but if today was any indication of her disapproval, all I can say is 'message received'. Mira continued to be fussy and irritable this morning, ending up back in her bed after only a few minutes in her chair. Apparently, she was briefly content at school in the morning, but it quickly faded and she was crying the rest of the day. When Sarah got her off the bus, she had been wailing the entire way home. She wasn't happy about anything this evening either, thus she ended up going to bed around 6:30pm, probably exhausted from working up such a storm for the second day in a row. No seizures at home or at school, but plenty of irritability. Some days you just have to throw your hands up in the air and let it happen, because it all seems pointless to try and find relief.

Monday, January 4, 2016

Hold on to Your Hats, It's Going to be a Bumpy Ride

After three solid days of being in a positive, happy mood, the wheels fell off the wagon today, with the horses running off in separate directions over the hillside, never to be seen again. Mira was a complete mess all day today. She started off with breakfast looking happy and content, but after having a huge TC (tonic-clonic) in her bed mid-morning, everything took a turn. She began crying and wailing in her bed the rest of the morning and the entire afternoon. Nothing would calm her down - no amount of bottles, walking, or resting in her bed would help her decompress. The wailing subsided, albeit very briefly (as in 15 minutes) by the time I got home from work and she had a few bottles for dinner, enough to give her (and everyone else) a breather from the crying. Minutes later, she was back at it, tears streaming down her face, wailing at max capacity. We again tried walking, but she detested it, so we put her back in her bed, which completely set her over the edge, spiraling into an extended frenzy of crying and wailing. She went solid for about an hour, until we finally gave her a half tablet of Xanax, as Trazodone does nothing for her in these situations. She continued on for another 30 minutes and has just now, finally stopped. It's now 9:00pm and I'm sitting here thinking, what the f*^k happened?

This has always been, and I have no doubt continue to be, a bumpy ride. Mira had such a great stretch of awesome days and this feels like a cold bucket of ice water over your head. We didn't make any dietary, vitamin, or medication changes in the last 3 or 4 weeks. She isn't constipated. She doesn't seem overly tired. So what is it? Do we chalk it up to 'just being Mira' or 'welcome to catastrophic epilepsy' or what? Either way, going through this journey is so completely and utterly exhausting sometimes.

Sunday, January 3, 2016


Mira wanted nothing but to keep moving yesterday. We went for a walk around the neighborhood and down to the store, which did burn quite a few steps. However, a majority of the time was spent yesterday doing laps with Mira in her chair, inside the house. I have figured out how to do a sort of extended, modified figure 8 in the house, by going from the kitchen, to the 'foyer' (which is basically where our dining room was, prior to the addition) into the living room, then back into the kitchen. We call it 'the track'. We have hardwood floors throughout the house, which makes it easy for us to push her around and make pinpoint turns, while avoiding cabinets, furniture, and low windows. Yesterday, we raced around for hours, since Mira was really enjoying it - she was vocalizing, kicking her feet, clapping her hands, and at times, even laughing. I didn't want to stop the momentum, so we just kept on walking. She had another TC-free day, with only a few visible lighting jerks - she was also in a great mood again, with the exception of bath time in the morning, which isn't unusual. Once that was over, she was happy the rest of the day.

Saturday, January 2, 2016

Great Start for 2016

Mira has been doing very well to start off the year. She hasn't had a big TC (tonic-clonic) since last Tuesday, when she was having these awkward movements in the morning, that eventually led into 2 involved TCs. For the past three days however, she has only has the same periodic 'lightning' jerks - I don't know what else to call them. They don't look like her typical myoclonics (that she has had for years), as her body doesn't shift to the right and her head doesn't drop at all. They only last a second and they are very random. She is having maybe a dozen or so a day that we actually witness. She stopped having those morning myoclonics, which is awesome and hope it continues! Overall, since we have eliminated the toy and have (most likely) reached a plateau with the fluoxetine, we are going to sit back and see where this takes us. So far, she has gone from having 1-2 TCs a day to 1-2 a week, which is a substantial improvement. Her mood (knock on wood) has improved somewhat as well - I had posted earlier that she is having more good days than bad, which is still holding steady. Today in fact, she happily sat through lunch at one of our favorite restaurants, with the entire family, not making a peep. Go Mira!