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.

Tuesday, May 31, 2016

Memorial Day Weekend

Memorial Day typically reminds me of two things - thinking about all of those who have served and died for this country of course, but it also marks the anniversary of when Sarah and I moved into our house. It has been 17 years now, with age of the house starting to truly show. It is your typical post-WWII house, built in 1953, when this particular area in Kansas City was no more than a corn field. The original windows and garage door have been literally falling apart over the past few years, so this is the year of having to ante up and fix some of the crumbling facets of our tiny ranch - we had the garage door replaced last week, the windows will be replaced mid-summer, and then the entire house will get scraped and painted after the windows are installed. We haven't painted the original part of the house for at least 10 years (with the new addition being painted in 2009) and it is really starting to look awful. We tried to tackle some other issues around the house over the extended weekend, in between the rain and the humidity. Raining and windy one minute, hot and muggy the next.

Mira has had some quiet moments, mixed in with some moments of extreme irritability. Yesterday, she became very fussy, crying at the top of her lungs at one point, combined with some random 'silent screams', where she is so distraught, it takes her a few moments to actually work up, and then release a long, extended exhaling cry. It all seemed very random, yet she was very twitchy all day yesterday, so I have no doubt there was something neurological that was bothering her. Today I had to go back to work and Sarah texted me about 30 minutes after I left and told me Mira was inconsolable. She cried for a solid 30 minutes, then took a long power nap. She was fairly reserved the rest of the day.

She has had some positive moments though - yesterday, we were sitting out on the deck (pictured above) in the late afternoon and Mira was enjoying the wind and sounds coming from the park next door. She kept hearing the birds in the trees and would turn her head, then be completely still, with only her eyes quickly scanning to try and figure out where it was coming from. A couple of birds were fighting and making a bunch of noise, and Mira started quietly smirking, almost on the verge of a laugh. It was pretty cute. She kept her legs extended out the entire time we were outside, which was an hour or so - I don't know how she finds that comfortable. It looks like a constant abdominal workout. Regardless, she seemed to be simply enjoying rocking in her chair quietly absorbing the sounds of the neighborhood. 

Friday, May 27, 2016

The Long, Long Week

This has been an extremely long week for everyone. First off, it was the first nearly full week of school (technically they had a half-day on Monday) - second it has been raining heavily nearly every day, which has kept the kids indoors, and to top it all off, we started summer hours at my work. Summer hours basically means 9 hour days Monday through Thursday, then a half-day on Friday. It never seems to work out, trying to get out early at a reasonable time on Friday, as almost everyone else I work with (clients and consultants) are expecting you to be there - thus, the emails, meetings, and phone calls continue on as they do. It just gives you more work to do one Monday or in the case this weekend, on Tuesday. Regardless, this first week of summer break all seemed to hit at once and I don't think Sarah and I were prepared for it. Only 2 1/2 months to go.

Mira has been very quiet and subdued this week for the most part. She had a few moments yesterday, but overall, she has been sleepy and lethargic. I think all of the rain has been making her tired - not a whole lot to do when we are trapped inside and it makes it very difficult to keep Mira from getting drenched when simply out running errands. We managed to get out today and had some celebratory end-of-the-school-year ice cream at Murray's, which is one of the best ice cream joints in the Kansas City area. Mira was very sleepy throughout the trip, slouching over quite a bit and not showing interest in much of anything. She was having some strange movements early this morning - some obvious seizure/neurological activity going on, which may have added to her tired demeanor.

Tuesday, May 24, 2016

More Seizures

Mira did not have a good last day at school yesterday. She ended up having a lot of episodes - multiple seizures within a short period of time, similar to the seizures she has been having every few weeks. It started when she first arrived at school and both the teacher and paras noticed she was off. Moments later, she erupted into a string of seizures. The cycle stopped after about 20 minutes, again, similar to what she has had in the past. Fortunately, it was only a half-day and the seizures/movements subsided within a short period of time. Today marked the official first day of summer and it started off with Mira having to go this morning to get her stitches out from her biopsy. She had the first appointment of the day, with the rain still going, after pouring all day yesterday. Mira was soaked by the time we got inside, not so much from the rain, but from wiggling in her car seat, which rearranged her diaper, which caused it to leak, which in turn, soaked her and the car seat both. Her stitches came out relatively easy, except for the last one, which was very tight. I changed her in the room afterward, went back outside in the rain, back into the wet car seat (as I had no towel to put down to protect her) and went back home. Then changed her into her third pair of pants, all before 9:00am. She would go through 2 more pairs of pants by the end of the day, all from wiggling so much. She just has days where she wants to see how many pairs she can go through in a day.

Sunday, May 22, 2016

Heavy Seizures

I seem to have a habit of jinxing things - in my last post, I mentioned that Mira had not had any tonic-clonics all week. Well, the streak ended yesterday, when she had a big seizure when she was waking up from a nap in the middle of the afternoon. She did the exact same thing today - another intense tonic-clonic after waking up from a nap, at nearly the same time. The seizure today completely knocked her out, right before we were ready to head out to the door for a graduation party. We waited it out for a while before we walked out the door, but Mira continued to be pretty floppy and lethargic in the car. She eventually started to perk up at the party - I think being out in the sunshine and wind helped bring her around some. Her legs were extended the entire time and her hands and feet were slightly clammy. She was still reserved and rigid when we were back at the house and she ended up going to bed earlier than usual.

Friday, May 20, 2016

Healing Up

Mira has been healing up nicely from the biopsy last week - no redness and no irritation whatsoever. We have been keeping it protected of course, with the only concern being the height of her side lateral supports on her chair, we thought it was going to irritate the incision area under her arm. Fortunately, it wasn't an issue. She is taking it all in stride. Her week has been uneventful and quiet, with today being her last full day of school before summer break. We haven't seen any big seizures at home, but she had some subtle ones at school earlier in the week - none over the past two days. She has been tensing up quite a bit, making it a challenge to keep her legs down to get her dressed and changed. Not sure why she is doing this all of the sudden - we just started seeing more of it over the past few weeks. It has been raining nearly every day here, making it difficult to get outside. It supposed to be nice this weekend, then start raining again, all next week. Next week will be our official 'getting settled into summer' week, which is always a challenge. Eli and Jonah have already written school off, checking out at the beginning of the week by counting down the days left.

Tuesday, May 17, 2016

Royal Outing

Yesterday we had our first Royals outing of the year, celebrating it at my company's tailgate and taking in a day game at the K. It's always a gamble how the day is going to pan out - we have been to a number of tailgates with my office over the years and they have ranged from decent to catastrophic. Mira had a couple of bad years, where she was absolutely miserable, thus we have ended up leaving in the second inning or sometimes even earlier. Other years, the kids have lasted a bit longer, but not much. Yesterday however, I think all of the stars aligned, the kids did great, and we lasted 7 innings. Constantly occupying everyone with cotton candy, frozen lemonades, hot dogs, and popcorn I think helped the cause. Mira finally started getting fussy in the 7th, probably because she just wanted out of her chair or just wanted a change of scenery. The minute we started moving, her mood improved greatly. We meandered through the team store and got Mira a pink Royals shirt and headed out shortly thereafter. Ironically, the game went into extra innings, with the Royals finally winning in the 13th. We were able to watch the end of the game at home, while Mira finally got some down time in her bed.