Saturday, April 30, 2016

Off Day

Up until today, Mira was having a pretty decent week - she had been happy, yet somewhat reserved, and nearly seizure-free. Today however, she she was not interested in just going with the flow - she was doing a lot of moaning in her bed this morning and later on before lunch, became very fussy. We got back in our routine of going for walks and getting an endless supply of bottles in front of her to try and keep her happy. She might have just been stir-crazy, as what dramatically improved her mood was being outside and in the sun. Thus, we went for a walk down to the store, another walk around the neighborhood, and twice went and walked in the park. Jonah was happy to get outside as well - the weather was ideal for just staying out. Mira's temperament improved as we got closer to bedtime and she ended up going to bed fairly early, only after having a ton to eat. Tomorrow we have a number of errands to run, so hopefully we can keep her moving. She is still not digging her glasses these days - at one point, we were out on the back deck and Mira carefully wrapped her finger around the right temple of her frames, pulled them off, and threw them aside. She did this several times in a row. We got the hint and just relented and kept them off for the rest of the day.

Wednesday, April 27, 2016

Pretzel Lady

Mira certainly has her comfort positions, but some of the contortions she works herself into are mystifying. Yesterday, she had a ravenous appetite for dinner, drinking 3 bottles very quickly. Afterward, she became dozy and by the time I had the bottles cleaned up a few minutes later, she had gotten herself into this pose and fell asleep - glasses intact and all. Most nights, her favorite sleep position is laying with her legs crossed, folded over, and her head and torso resting in her lap. It's hard to explain and equally difficult to imagine, being so flexible that you can nearly fold yourself in half and be comfortable enough to sleep that way. She is quite the contortionist.

She has been doing well over the past week - she continues to be very subdued and relaxed, not really showing a ton of interest in much. The expression that I have been getting out of her when we are outside or racing around the house, is an resounding 'meh'. We haven't seen any seizures since this weekend, which is wonderful.

Sunday, April 24, 2016

Jinxed Again

I knew as soon as I went on record saying Mira hasn't had any visible major seizures, she erupted yesterday and had a ton of them. She started off in the morning in a very quiet mmod, having some strange movements, but I didn't think much of it. So we decided to make a run to Costco. By the time we got into the store, she started having a string of seizures, similar to what she was having at school at the end of last month. She went slowly rigid, with her arms and legs extended for a solid 20-30 seconds, then slowly relaxed and went limp, then about a minute or two later, would repeat the cycle. She did this about 10-12 times in a row. We have seen this activity quite a bit over the past year, so it wasn't anything out of the ordinary, unfortunately. Her breathing isn't stalled or interrupted, but they are seizures nonetheless. We were home within 30 minutes, where she stopped doing having them, but would later have some isolated seizures like this throughout the day. We were outside much of the day yesterday, either walking or in the park, where she had a few episodes. She continued to have a few more today, but nothing to the extent that she did yesterday - maybe 3 or 4 random ones. All of this activity has been making her very drowsy. She is sitting next to me now, dozing off and on in her chair, watching the Royals try to redeem themselves after their 8-3 loss to the Orioles last night.

Thursday, April 21, 2016

Quiet and Seizure-Free?


Mira has been having a positive week - she has been strangely quiet and calm. She doesn't care for bath time or hair-brushing time, but she rarely does. I suppose one of the more interesting things that has been going on with her lately is that she hasn't been having any major seizures. It's not as though we have been doing anything that much differently (other than increasing her CoQ10, which she has been taking for months - one of my many theories that she has some mitochondrial issue, thus CoQ10 might prove to be beneficial) - regardless, she is definitely doing better on the seizure front. The last major seizure we actually remember was on March 25th, when we had to pick her up from school because she was having such a rough day. She has had a few days where she is twitching and fidgety, but again, no tonic-clonics. I can't remember her ever having such a long stretch without some sort of major seizure activity.
On a side note, Mira's hair is getting really long - combine that with summer coming up, we need to get her on the schedule to get her hair cut. It has been way too long. We always have it up tied up and out of her face, to keep her from chewing on it. It's always a challenge giving her a bath with such long hair too, as it takes multiple washings to get it washed and under control. Sarah and I were looking back and is turns out, the last time we took her for a haircut was over 2 years ago!
We are hoping Mira's seizure-free days continue here - it seems whenever I mention she is doing better, I jinx it and she ends having a bunch of seizures in row. Fingers crossed. Sarah snapped this picture of her in her chair, where it looked as though she was in deep thought, contemplating something very important, with her chin resting on her hand and her other arm propping her head up.

Saturday, April 16, 2016

No Place Like Home

This was my third week of travel in a row and we all finally get a break from it for the next few weeks. Although, Sarah is traveling next weekend, so we are not entirely clear I suppose. I had to travel to Nova Scotia and New Brunswick again - as the project that I am working on stands currently, I hopefully won'y have to go up there again any time soon. I have made at least 6 or 7 trips over the past 6 months and they are tiring for everyone, as I am gone a minimum of three days with every trip up to northeast Canada.

Mira has been quiet the past few days and in a pleasant mood. She was having some seizure activity at school earlier in the week and was having a lot of twitches today, but otherwise, she has not had a major tonic-clonic in quite a while. Today in fact, she did very well - she was in a good mood all day long, despite the jerks and twitches, and was making her infamous dragon noises throughout the day. We ran a few errands this afternoon, which Mira tolerated very well. Afterward, we went for a walk down to the store and Mira was kicking her feet and moving the entire time. Her eye-rubbing was limited and random, which was unexpected, considering it was very sunny outside. The kids didn't have school yesterday, which gave them yet another three-day weekend. Mira has been taking full advantage of the extra day off, by sleeping in late and taking a number of catnaps. She has been very chilled out today and seems to be happy just relaxing at home.

Sunday, April 10, 2016

This Week

By comparison, this week was a little calmer than last week. I did have to travel down to Louisiana mid-week, but it was a relatively short trip. Things were fairly quiet for Mira most of the week - she had her usual fussy spells late in the day, but nothing out of the ordinary. Surprisingly, we have not seen a single tonic-clonic for over a week (or any other seizure activity for that matter) and have only witnessed a minimal amount of myoclonics. She hasn't been having any at school either, which is fantastic. Her eye-rubbing on the other hand, has been relentless. She has been doing it a ton at school, so much so that her teacher and paras are having a difficult time keeping her glasses on. We are seeing an equal amount of rubbing at home, even while she is indoors. I am at a loss as to what to do about it - redirection only works so many times, then you just have to let her go and get her fix. In the car, especially if it is just Sarah or I driving with Mira alone, it is very difficult to control. On road trips (even on short trips I have considered it) we have had to resort to putting a towel up over the window to keep her from rubbing so much. Mira's drooling continues to be an issue too. Out on our walks, she is just creating so much of it, I have to keep a hand towel in one hand while I am pushing her. It is just becoming routine now.

Pieces and parts are falling off of her chair lately, especially this week. I would have to go back and look to see just how long she has been in this particular chair, but I think it has been at least 3 years, maybe 4 or 5. I have lost all track of time - all I know is that we had an awful experience with the seating company to get this chair and I refuse to deal with them unless we are desperate. They have monopolized the competition in this area and they know they can provide terrible service and you just have to suck it up and deal with it. Durable medical equipment companies are a thorn in my side. Anyway, the straps on her chest piece have been breaking off and then on Friday, the casing around her lap belt broke off. We went hunting online to find some replacement parts and think we managed to find a couple of different types that will work for her chest piece, but it will be difficult to replace her lap belt cover. The belt still works fine and is safe, it just doesn't have a case around one side. It simply looks junky. The parts should come in within a few days (thanks Amazon Prime) but we will have to hunt deeper for the belt.

We managed to go out for an early dinner, thanks to grandma - she invited us to one of her favorite spots and Mira actually did really well. She became fussy at the very end of the meal, but chugging three bottles (one every 10 minutes or so) which kept her entertained and occupied. The restaurant wasn't very busy, which certainly helped Mira stay calm - even quiet enough that Mira dozed off for a few minutes at one point.

Sunday, April 3, 2016

Outings + Openers

This week went by in the blink of an eye. Sarah and I actually went to San Antonio for a gala event at a project that I had worked on for almost 2 years, which was an expansion to the San Antonio Convention Center. It is extremely rare, in fact, this was the first time, that Sarah and I were able both go to an opener, thanks to my office and mostly to our dear friend Tisha, who graciously agreed to watch the kids while we were gone. I cannot thank her enough, knowing it is always a lot of work and even more so when you have your own family to take care of on top of ours. Despite only being gone for 36 hours total, it was nice to get away for an evening and have actual adult conversations that don't revolve around seizures, medications, or therapies. It did rain for part of the day we were there, but the skies loosened up by mid-day and it was dry for the actual gala. We ended up on the balcony of the building where we could see part of downtown San Antonio and for the first time ever, we were able to walk the red carpet like celebrities - it was quite an event for the city and it was awesome to be invited to be a part of it.

Mira did well while we were gone - she hasn't had any major seizures all week (and while we were gone - bonus) and for the most part, has been going with the flow. This weekend she has had her moments of crying, usually in the afternoon, which is typical for her. I have had to stop and start this post several times to try and find her happy place, which usually involves walking outside. We made an attempt at brunch this morning, as Sarah was craving biscuits and gravy, so we packed up the entire family and went out. The weather has been amazing this weekend - in the 60's and sunny, so we saw it as a perfect opportunity to set out on an adventure - the definition of adventure around here these days is constitutes a meal out in public. Mira lasted for about half of brunch - had we not had to wait 30 minutes for a table, she might have gone the distance. Instead, she was fussing off and on, so we picked up the pace when we got are food and finished our meal quickly. 

Mira just does not like to sit still these days, thus we have done a ton of walking this weekend. Both days, we have taken multiple walking excursions around the neighborhood, each outing lasting an hour minimum. Thank goodness for the awesome weather. The excessive drooling and eye-rubbing continues with each walk. I am literally having to wipe her face down every minute we are out. Her jaw is open for a majority of our walks, so the saliva is simply pouring out of the side of her mouth. It isn't like she is sitting still either - her legs and arms are always in motion, while her head is pushing forward with every step. Her eye-rubbing is somewhat isolated and random - on some walks she is constantly trying to get at her eyes, so we end up losing the glasses altogether. Other times, she doesn't touch her face but maybe once or twice the entire time we are out. Speaking of glasses, we did pick up her revised lenses yesterday and the optometrist snapped them into her old frames. Her script was just slightly different than her original and the dispensary agreed to remakes them at no charge, even though CMH forgot to call in the updated script within the 30 day time frame. 
At brunch earlier today, we all managed to get decked out in our Royals gear, as the season opener is happening tonight at the K. I won tickets last year to the home opener (but couldn't go because of travel) but this year I wish I was in the same boat, since they will be doing the ring ceremony - you know, after winning the World Series last year! How time flies - seems like all of that happened just last week. I'm not sure Mira is going to stay up for the game, but we will see how it goes.

Sunday, March 27, 2016

Unhappy Easter

Mira was not happy this Easter Sunday. Maybe it was the snow this morning, then the 25 degree temperature swing a few hours later, but something was bothering her. She could have been holding a grudge from her bath earlier - I think she was simply tired and wanted to relax. We headed over to some friends for their annual brunch and Easter egg hunt around noon, but Mira wanted nothing but to be back in her bed. Once we were settled in at the party, it was only 20 minutes before Mira decided she was done. She finished off 2 bottles, but she really just wanted to be home - I think the noise was getting to her. I ended up packing her back up, taking her and Eli (who was already bored, because well, he is a 13 year old kid at an Easter egg hunt, which apparently isn't cool anymore) and headed home. Mira fussed the entire time until of course, until she was back in her bed. She slept off and on most of the afternoon, but wasn't unhappy. We did a fair amount of racing around the house in her chair late in the afternoon, stopping at times to watch the birds out the back window, which seemed to momentarily capture Mira's interest.

Friday, March 25, 2016

Seizure Action Plan

I guess I spoke too soon when I said Mira was having an uneventful week. The kids had a half day and since my office was closed today, Sarah and I figured we would try and have an early lunch together, while the kids were in school. Lunch was awesome, but as soon as we got back in the car, we received a phone call from the nurse at Mira's school. She said Mira had 5 big seizures this morning and had another 9 or 10 additional seizures a bit later. Of course, we were alarmed, a she just had a similar day, just last week. We had to head home so Sarah could grab the car and pick Jonah up at school (who was getting out in 20 minutes) while I went to pick Mira up at her school. The nurse brought Mira up to the front office and Mira was kicking her feet and happy as can be. I was relieved when I felt her hands, which were completely dry. I was expecting Mira to be a wreck after so many 'big' seizures. As it turns out, the 14 or 15 total seizures she had throughout the day were no longer than 3-5 seconds each. After taking with the nurse, she explained that none of them were true tonic-clonics, but rather just a series of brief myoclonics or very subtle ataxic or dystonic events. That type of activity, in my mind, is not reason for alarm. I explained to the nurse, again, that Mira has a ton of those, every day and those types of seizures are very typical for her. The nurse seem to just want us to pick her up. I feel as though we are all not on the same page.

This is becoming a recurring theme at school. The nurse says shes is having 'a bunch of seizures' or 'multiple seizures' when in fact they are seizures, but nothing to really cause such a concern that we need to rush out and immediately pick her up. It is becoming very frustrating for us, thus we are going to initiate a meeting with the school to get an updated seizure action plan in place on Monday. I don't think the school nurse is used to seeing what we see on an average day at home with Mira and she is taking a very precautionary stance, by calling us whenever she witnesses more than a couple of myoclonics. I wouldn't necessarily call it overreaction on her part, but I don't think it is necessary for her to call us when this type of activity surfaces at school. We never intervene with rescue meds unless she is having multiple tonic-clonics within a short period and usually when that happens, Mira is significantly altered, because the seizures last for 45 seconds or more and they are intense and awful. She becomes visibly affected, clammy, rigid, and extremely lethargic.

The last few times when we rush up to pick Mira up, it turns out that all of the seizures she is having are brief jerks and subtle seizures that are very short - she typically doesn't bat an eye at this type of activity and it is common for her, every day. In the 10 1/2 years that we have been witnessing seizures, Mira has never stopped breathing. She has never gone into respiratory distress. She has never had a seizure that lasted more than a minute and most times, she is periodically breathing 20-30 seconds into it. Those tonic-clonics are terrible to witness, yes. When she has this type of heavily involved seizure repeatedly, yes, it calls for intervention and we know when to intervene. When she has a subtle arm movement, myclonic, or brief altered stare, it is not something you need to react to - she does this a lot and in fact, there is no reason to inform us that we need to pick her up. There is nothing we can do about it - Mira just has them and she has them frequently. It is obvious that we need to all have a sit down and get a plan in place with the school, as it is causing a lot of confusion and unnecessary stress with everyone.

Wednesday, March 23, 2016

Quiet Week

After Mira's multiple seizure episode last week, things have quieted down for her this week. She has been having a lot of small seizures at school for the past three days, but only having one tonic-clonic on Monday. Her teacher said she has been having smaller 'episodes' throughout the day, brief seizures that have been lasting 5-10 seconds. Other than that, we haven't been seeing much activity at home. Mira has been in a decent mood most days, with the occasional fussy spell, usually when it is bath time or hair-brushing time.

We have been getting outside lately after dinner to the park and Mira is loving the wind. She is smiling and kicking her feet - when the wind fires up, she even belts out a periodic chuckle. We usually are just walking around the park on the path while Jonah is playing, but it is enough to maintain Mira's interest - she loves the motion and movement. We have noticed that she is doing an excessive amount of drooling these days, especially when we are walking. I have gotten in the habit of taking a towel with us to try and monitor the amount that ends up on her shirt and jacket. I'm not sure why she is creating so much drool, but she will soak her front in a matter of a few minutes, if you aren't on top of it. She isn't doing in her bed hardly at all - mainly just when we are walking.

We had been waiting a few weeks for Mira's updated glasses to come in, but Sarah realized when she called this morning to follow up, it turns out the ophthalmology clinic hadn't even sent over her updated script yet to start the process moving forward. Good thing she called, as the now we will be waiting another 2-3 weeks minimum to get her updated glasses. Hopefully, the optometrist will honor the remake order and change in her script, despite it being outside the 30 day window to get them remade.

Friday, March 18, 2016

The Day After

After Mira's rough day yesterday, she continued to be groggy and sleepy most of the day today. She did show some brief signs of energy late this afternoon, but overall, she was quiet and did a fair amount of sleeping. We didn't see any seizures today and she wasn't near as clammy as she was yesterday, but the Diastat and all of the seizures yesterday left her exhausted. It would have been nice to to get her outside from some fresh air, but the temperatures dropped considerably today and it even was snowing at one point. She was too floppy and tired to take out for some errands - also it was not worth the risk of getting her sick or something on top of it. What she needs is some rest. The pictures below show what she was like first thing this morning. After a few bottles, she immediately went back to sleep in her chair. She had a voracious appetite today, which isn't surprising, considering she had very little to drink yesterday.


Thursday, March 17, 2016

Another Diastat Seizure-Filled Day

Mira started off the day having multiple seizures. I went to get her out of bed this morning and she was clammy and rigid, then started having an enormous tonic-clonic. Sarah and I ended up getting her changed and dressed, then put her in her chair for about 30 minutes, which was difficult, because she was completely floppy and lethargic. We managed to get her meds in her, then put her back in her bed, then she began to have a string of equally intense tonic-clonics, which made 4 total within about a 45 minute span. Afterward, she continued to have a steady flow of arm extensions and rigid, rhythmic movements for another 30-45 minutes, so we decided to administer Diastat to interrupt the cycle again. This whole scenario is becoming increasingly common with her - we have had to give her Diastat more times in the past 6-9 months, than we have in all of 9 years before that, combined. From that standpoint alone, her seizures and episodes have become much worse over the past year. Needless to say, she has been extremely tired and lethargic all day, partially due to the Diastat, but mostly from the seizures and dystonic-like activity. The episodes always take a toll on her physically. Her hands were completely locked this morning, with her fingernails clenched into her palms so tightly, that it was digging into her skin. Her feet were like icicles and her back was drenched in sweat from where she was laying in her bed. She also must have bit her lip or tongue during one of the seizures too, since she started drooling out a small amount of blood at certain point afterward. She continued to have these movements and temperature swings throughout the day, but to a much lesser degree prior to the Diastat, but overall, she was listless all day long. We kept her at our sides most of the day and tried to keep her full of fluids, but she was reluctant to drink much, since she was so lethargic.