Sunday, July 24, 2016


If there is one positive attribute with Mira's episodes (her most recent one last Wednesday - see the post before this one) is that they typically never last more than 24 hours. This latest one was no exception. By the time we put her to bed Wednesday evening, she had already been slowly coming around a bit beforehand and by the morning, she was back to baseline. Her fussiness and irritability has subsided over the weekend, with a minimal amount of seizure activity since. However, randomly this afternoon, she was laying in her bed and started having a series of strong myoclonics, one about every 15 seconds and the pattern went on for about 45 minutes. This is also not an uncommon occurrence these days. Rarely do they happen in the middle of the afternoon, but today they did - typically she has these right after waking up. I suppose today has been a different day in general for her - after having a couple solid weeks of irritability, she was very quiet and content all day today. She did spend a fair amount of time in her bed just chilling out, only getting up to race around the house and to have something to drink. She has loved racing around today (it was miserably hot today (hitting 98 degrees, so going outside for a walk was not an option) even if it was just around the house - she never seemed to tire from it and the only reason we stopped was because it was actually wearing me out. Sarah and I have been taking turns transferring her, as I again strained my lower back, either from transferring her chair into the van yesterday or from sitting awkwardly on the couch, hunched over my computer - not sure which. Either way, today I have had some serious pain that no amount of Advil seems to combat. This happened a few months ago and it look almost 2 weeks to fully get over it.

Wednesday, July 20, 2016

Very Rough Day

Mira had a really rough day today. I went to wake her up this morning and it was obvious that she had just had an intense seizure. She was laying in bed in a sort of post-ictal position, one that is reminiscent of the aftermath of one of her involved tonic-clonic seizures. Her arms were stretched outward and she was still having some small spasms with her arms. Her back was completely soaked and she was staring at the ceiling. I can tell it had just happened, at least within the past 10 minutes. Unfortunately, it is not uncommon for her to have a seizure when waking up, but it is always disconcerting nonetheless. I got her changed, dressed, and in her chair, but based on her expression, you could tell this was potentially going to be an off day for her. It's sometimes difficult to tell immediately after a seizure, so we decided to send her off to school, keeping in mind that with limited summer hours, she was only going to be gone for a portion of the morning.

Sending her off to school was probably not the best decision and I should have read the signs better, as she had another big seizure on the bus. The driver and para told her teacher, who in turn told us. Her day didn't improve much after that, as she was off the entire morning and was having a ton of twitches and jerks at school, throughout most of the morning. We could barely get 1/3 of a bottle in her before her bus arrived, which was red flag that things were not going to go well - Sarah couldn't get her to drink anything the rest of the day. She was either completely rigid or very lethargic, or both, the entire day. We finally managed to get her to drink a full bottle at about 7:00 this evening, which took her about 20 minutes to actually finish. You can tell from the pics above, that her arms were tense, her feet extended and crossed, and she was very clammy - her temperature was completely off. She was extremely quiet and altered, not responding to much of anything visually or any motion. Most of the time she will react to her chair moving, but today she was motionless and void of any recognition with every turn of her chair.

She has had numerous episodes like this in the past and you never know when they are going to happen. Fortunately, she only happened to have 2 tonic-clonics, as she has had as many as 10-12 in a single day in the past when these dystonic episodes surface. We have been keeping a close eye on her, as she has gone through the neurological ringer today. Epilepsy sucks, that's all there is to it.

Sunday, July 17, 2016

Another Rough Week

Mira has had a turbulent week, starting off last Sunday by spending the day having continued jerks and an absolute ton of myoclonics throughout the day, which continued into Monday. I had to fly out to New Brunswick on Tuesday morning and didn't get back until mid-day on Thursday. Mira ended up having an enormous seizure Tuesday night in bed, which Sarah said was really awful. That seizure took a toll on her and she was very lethargic all day Tuesday and part of Wednesday - her teacher said she was out of it at school and didn't want to participate in much of anything. By the time I was home on Thursday, she was back to her typical routine, which has been over the past few weeks, just a lot of continued fussing. There has been something bothering her, neurologically, but there is no telling what exactly it is - she has just been irritable and twitchy. On Friday, she seemed to have a better day, even spontaneously laughing on a few occasions, but overall, has not been happy with much. On a positive note, her fancy new sparkly shoes came in (as she outgrew her last pair of Tom's) and she hasn't been able to kick them off yet, not from a lack of trying. These particular shoes are about the only pair she manages to keep on her feet about 95% of the time and of course, they are stylish. She gets so many comments on them!

Monday, July 11, 2016

Continued Fussing

Mira's fussy spell continued through the entire weekend - just like a newborn baby, she would nap, then wake up and start crying until she had a bottle, or two, or three. This cycle started off this morning and was unrelenting the entire weekend. She did manage to sleep solid through the night both nights, but she would pick right back off where she left off the evening before, crying. It never seemed to subside during the day for more than an hour at a time. We did manage to go for a few walks, but it has been so sweltering hot and humid, that it just felt miserable outside most of the time. Getting outside seemed to break Mira's routine temporarily, but she would soon become either lethargic, irritable, or both if we stayed out too long, meaning more than 15 or 20 minutes. She was off school all last week, which may be part of it - she starts back tomorrow morning, so hopefully, things will turn around for her. She hasn't been having any seizures or anything significant - just her few typical random spasms and jolts every so often.

Friday, July 8, 2016

Cranky Week + Biopsy Results

Mira has been very irritable this week. Blame it on the heat, boredom, or seizures - or a combination of all three, but nothing has been keeping her happy these days. Her patience seems to wear thin very quickly, especially in the morning and late afternoon. But then again, at all times of the day she has been known to vocalize her displeasure. I was off this afternoon (thanks to summer hours) and took Mira out for a walk later this afternoon, as an attempt to redirect her when she was pretty cranky. She did great for the first 10 minutes - happy, kicking her feet, and doing some dragons. Shortly thereafter, she started having some strong tonic seizures and movements, where she stiffens up her upper body and her legs, repeating the cycle of seizures for the next 10 or 15 minutes. We started heading back home after I saw this cycle unfolding, so by the time we ended up near the house, she had stopped, but it quickly wore her out. She was quiet the rest of the afternoon - not irritable, yet not doing much at all but resting.

We did talk to her neurologist earlier this week and Mira's biopsy results came back normal. I guess we can check NCL off of the list - the long growing list of things Mira doesn't have. We were told it was a only a very remote chance that anything would surface from the test, so it wasn't much of a surprise that it came back negative.

Saturday, July 2, 2016


Mira started off this month in a sour mood. She did alright this morning for a bit, but we pressed our luck when we tried to go over to Lawrence for lunch. Mira started to get a little fussy in the car, then really ramped it up when we sat down to eat. We only brought three bottles with us, two of which she finished in the car on the drive up, so with only one remaining, she finished off the last one in the first 10 minutes we were sitting down at the table. We were out of tactics and ammunition, so Sarah and I traded off, taking her outside and walking her around, while the other ate with the boys. Sometimes you simply have to pass the baton, and muster through what you hoped was going to be a simple, uneventful outing. It is always hit or miss with Mira and going out, so as far as today went, it was a big miss. That being said, it was incredibly loud in the restaurant and Mira has never been a big fan of noise in general. Then again, she was getting upset long before we actually reached the restaurant, so I have a suspicion it was something else that was bothering her, most likely something neurological. By the time we got back on the road, Mira was happy for a bit, but soon started crying again, until she was back in her element - her bed. She ended up taking a small nap and was in a much better mood the rest of the evening. Some days I feel like we are just better off staying at home and doing nothing, which frankly, is what we do most of the time. It's exhausting going out sometimes, thus we seem to do it less and less as a family now, especially during the summer, when everyone has their own idea of how the schedule is going to unfold for the day. We knew we were asking for trouble when we decided to simply go out to lunch with a surly 13 year old who is impressed by nothing, an 11 year old with severe disabilities, and an 8 year old who is on the spectrum, while they are all simultaneously complaining, in their own way, that they would rather simply stay at home. Three kids - three different agendas.

Tuesday, June 28, 2016

Happy Birthday, Mira!

Lots of legs lifts and kicking for Mira today, because she turned 11 years old today! She was full of energy this morning, constantly extending her legs outward (she always keeps them extended when in her chair) but I was able to capture some pics of her doing these windmill circles with her legs, every so often. She is super flexible and she can practically sweep things off of the kitchen counters with those leg extensions. Mira has never been much for parties and cake so we ended up having a quiet celebration here at the house and unfortunately, Mira seemed very tired. Mira has grown so much in the past few years, that looking back on some of her pictures, it's really hard to believe how much older she looks. She has shot up in height over the past 18 months as well. She is getting too tall for her chair, but I am dreading the process of getting her a new chair (it was extremely painful with her current chair) yet soon enough, we are not going to have a choice.

Her seizures have been at bay for the last few days, which has been fantastic. That always puts her in a better mood. Over the weekend, she was having a ton of lightning jerks an spasms all day long, which was making her irritable, especially on Saturday. No big tonic-clonics for a while though. Over the past nearly 11 years, her seizures have always come in waves - silent for a bit, then often erupting a few days later. You just never know what to expect.

Friday, June 24, 2016

Sleeping Mira

As it already looks like the Royals game is over (they are down 12-1 in the 3rd inning) and I am finally able to sit down, now would be a good time to give you a quick recap of what Mira has been doing the past 2 days. Here it is:


She slept for like 5 hours in the middle of the afternoon yesterday and at every opportunity today, she has been asleep. I don't know if it is the heat, the summer, or she is worn out, but it feels as though she is just very tired these days and wants nothing more than to rest. We have been taking every opportunity when she is awake, to get her out of bed and race around the house, (which she is animated and enthusiastic about) but once we stop, she quickly falls back into sleep mode within 10 or 15 minutes. She didn't have school today and we haven't been seeing much neurological activity, at least today anyway, so we will chalk it up to being one of those weeks where she needs to capture some downtime to recharge her batteries.

Tuesday, June 21, 2016

Great School Day

Mira always has her comfort positions. After her bath yesterday, which she doesn't always particularly enjoy, Mira was very anxious to get back in her bed to decompress. While in her chair, she always keeps her legs fully extended and rigid, but once into bed, she often does the complete opposite, which is curling up like a clam - I swear she has the strongest abs in the world to be hold these extended and curled poses so effortlessly. When in her bed, she often immediately curls up into this position, as though she is practicing a somersault. Her legs at her chest, hands on her knees, and feet crossed, all in a perfectly choreographed pose. She will lay like this for a solid 10 or 15 minutes sometimes, batting her hands against her knees, drumming out some random beats. It's all part of her finding her comfort zone. 

Speaking of happy - Mira had a great day at school this morning. Her teacher said she was all smiles, very energetic, and was even hitting her big mac switch on occasion. She tolerated getting into the KidWalk and overall had a very positive day. Unfortunately, her solid demeanor didn't last all afternoon, as she was very fussy before dinner. I think she was just tired, as she kept falling asleep in her chair before I could get a few bottles in her before bedtime. 

Wednesday, June 15, 2016

ESY - Extended School Year

Mira started her ESY program on Tuesday and despite the fact that her schedule gets continually cut every summer (thanks to the State of Kansas and our atrocious governor) I am glad that Mira has an outlet, even if it is only for a few hours a day. While new drivers, bus paras, and new paras at school, Mira seemed to be right back in the swing of things after only 2 days. She has been increasingly fussy this past week and her going back to school could not have come at a better time. Something to simply break up the summer days for at least part of the week, if nothing more. Her teacher and summer paras are able to get in all of her therapies and activities, which she desperately needs to try and maintain, despite the shortened schedule at school.

The weather has been spiking this week, hovering consistently in the mid to high 90's, which is making it difficult to get the kids outside to do anything. There hasn't been the chance to get Mira out for some walks either, which she typically enjoys. I think she has been getting cabin fever over the past week, thus the increased irritability. We haven't been witnessing any late afternoon seizures, but she did have a ton of myoclonics throughout the day today. You never know what the day is going to bring.

Saturday, June 11, 2016

Early Evening Seizures

Mira has been up and down most of this week - she has had some points where she is happy, even spontaneously laughing out loud, like she did in the store yesterday - to very low points, where she is inconsolably wailing at the top of her lungs. It has always been a roller coaster over the past nearly 11 years and Mira has been taking us for a ride on it these first two weeks of summer. We have been trying to break up the days with walks and errands, just to get her out of the house, which helps a little, but sometimes, there just isn't that much to do and Mira becomes quickly bored. We went for a walk early this afternoon, to break one her her irritable episodes, which bought a smile to her face, as long as we were moving. It is challenging to constantly be in a state of motion, but Mira does not like to sit idle sometimes. Whenever we would stop, she would get fussy within matter of a minute or so - my signal to start walking again. Summer has officially sifted into high gear with the heat, reaching 95 degrees here already, which makes it difficult to get outside to enjoy a simple walk around the neighborhood, without profusely sweating. Mira does start school next Tuesday, which will help break up the day, even if it is only for the mornings.

The last few days, Mira has been tiring out early, ending up in bed for a 'nap' before she actually goes to bed. For the third evening in a row, she has erupted into a huge tonic-clonic in her bed. She makes that horrible grunting sound (as she did this evening, right when I sat down to start this post) which sends a chill up my spine. I rushed in there to find her having a big seizure. We haven't been seeing any TCs during the day, just a lot of random startles and tension in her arms/legs, but these early evening seizures in her bed are disconcerting. Yesterday, she had a couple in a row - tonight it was just one so far, but very intense.

We have not heard anything back on the biopsy, but then again, it has only been about 4 weeks. We will probably wait another few weeks before we reach out to her neurologist. As with all of the testing Mira has endured over the years, we typically don't expect to hear anything back within a reasonable amount of time, unless they discovered something, which of course, has not happened yet. We end up following up at her next appointment to go over it.

Sunday, June 5, 2016

Coming Around

Mira continued to recover from her bout of constipation last week, with things still running in the opposite direction most of the day yesterday. There was a lot of residual cleanup going on with each episode, but slowly, things are getting back to normal. Mira has been a little up and down the past two days, but mainly, she has been very tired. We managed to go out for Indian food for lunch today and Mira did great, so long as we kept getting bottles in front of her. With all of her stomach woes, her appetite has increased. We also have taken numerous walks and while Mira is interested and active for the first portion of the trip, she quickly wears out and begins to slouch and drool a lot soon thereafter. She took a very long nap this afternoon and we had to ultimately wake her up for dinner.