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.

Friday, June 3, 2016

The Lone Banana

There's no way to sugarcoat it sometimes, so I will just come out and say it. It was an awful week all around. Mira has been exceptionally irritable every day this week, which has led to a lot of stress, anxiety, and eventual exhaustion around the house. With the boys (and Mira) out of school, Sarah reached a tipping point pretty quickly this week, with all of the crying and tantrums from Mira and on occasion, Eli and Jonah - sometimes all three at once. No amount of walking, or museum excursions, or lunch/dinner out (just to try and break the cycle and to get out of the house) would suffice for all three of them. It is very difficult to simultaneously entertain a surly 13-year-old, a non-ambulatory and non-communicative almost 11-year-old, and an almost 8-year-old, who is on the spectrum. They have all had their moments, with Sarah doing all of the work while I am at the office. If there has been a bright side, I haven't had to travel for the last 3 or 4 weeks, so the baton can be successfully passed when I walk in the door at the end of the day.
The week started off with a banana. Yes, a seemingly harmless banana, which I mashed up and put into one of Mira's bottles. We used to do this at least once a day, years ago - it gave her calories, potassium, and she loved the taste. Giving her one on Tuesday quickly reminded me of why we stopped giving her bananas - it created horrible constipation. Mira does not handle constipation well, at all. And when I mean not at all, it creates havoc not only on her innards, but it makes her absolutely miserable. Tuesday she was uncomfortable, Wednesday she was wailing, and by Thursday, she was inconsolable and extremely twitchy and having a ton of seizures. We speculate, all because of the constipation. All of her seizures yesterday could have been brought on by her digestion, but then again, she has had awful days without being constipated. Either way, it was the perfect storm of misery.

Fortunately. we recognized the issue by Wednesday that she was starting to struggle and all signs seemed to point to that one horrible banana. We doubled her Miralax dosage on Wednesday and again on Thursday, but still, with no progress in the constipation department, Mira continued to wail and we braced for the inevitable onslaught that was on the horizon. We have been down this road before and while we know it is truly awful for her, it is a literal shit-storm for us. Needless to say, today was the day everything finally kicked in and the complete evacuation of her system began. Fridays are half-days for me in the summer, so by the time I had gotten home for lunch, Mira was in full evacuation mode. I will just say that it is difficult to understand just how much volume one's intestines will actually hold. Multiple bed changes, clothing changes, and of course baths later, we hope everything is back on track. Lesson learned. No more bananas, Ever.
After all of the chaos this afternoon, Mira and I managed to go down to the annual art fair, which is only 2 blocks away. Mira enjoyed getting out and frankly, we had to vent her room afterward while we were gone, so some fresh air was in order. Mira has been in much better spirits since this afternoon in general, which is even more evidence pointing toward the culprit yellow fruit. She also looked exhausted from all of the struggling this week, with the constipation as well as the seizures yesterday.
Prior to the banana adventure, someone managed to back into our car on the street on Memorial Day, which I didn't notice until later that day. This is the second time that the car has been run into in that very spot, but at least the first time, our neighbor graciously admitted that he bumped into it. The damage then was minimal, in fact, we just popped the dent out by reaching in the back quarter panel. This time however, someone really did some carnage, knocking the rear panel off  the frame and significantly denting  the bumper. They didn't bother to leave a note or anything either, so it could have happened on Saturday for all we know. Happy Memorial Day - enjoy your future increased insurance premiums and your high deductible.