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.

Wednesday, March 16, 2016

The Long, Long Week

Mira has been pretty crabby the last few days. She hasn't had any major seizure activity and we haven't been doing anything out of the ordinary, but Mira is certainly off. Especially in the afternoons, she seems to get really irritated and hungry, which no amount of bottles or racing around the house will suffice. It has been a hectic week at work, but I am taking the rest of the week off (while working from home some) to give Sarah a break here back at the house. Spring break is difficult, so hopefully tag-teaming it from here on out, will help maintain a certain level of sanity.

Monday, March 14, 2016

Spring Break is an Oxymoron

After a rough end of the day yesterday, I think we were all completely worn out by bedtime, especially Mira. It was rough getting up this morning, not only for the lost hour because of daylight savings time (which made a typical Monday increasingly difficult) but the fact that weekends in general, are taxing. Technically, Friday was the beginning of spring break for the kids, but it already seems like an eternity. There really isn't such a thing as spring break in our house - we cannot afford to travel much (or at all) as a family of five. Not to mention, going anywhere is complicated. We had not planned to go anywhere this spring regardless, so we knew we were going to have to invent things to do to keep everyone occupied for the week, which always proves to be difficult.

Mira was in decent spirits this morning after a long sleep, but her mood turned when Sarah did her hair. She continued to be upset about it for quite a while afterward, finally settling down after a few bottles and some down time in her bed. All of her frustration took its toll, as she had some serious naps the rest of the day. The weather was amazing outside today, which would have been great to enjoy, had I not had to go to work and sit in meetings the entire day. The highlight was actually getting out of work on time and being able to have dinner together, then getting Jonah out to the park for some fresh air.

This is the time of year that tends to make me a little bitter. Going into work and hearing about 10 day excursions to Maui and awesome family vacations at the beach, make me gnash my teeth a little. Seeing pictures of toes in the sand and kayaking adventures is tough to see on a Monday after a weekend of seizures, wailing, and diapers. Don't get me wrong - I am really happy for you. Jealous, albeit, but happy for you. Thank goodness the NCAA tournament is starting this week to create a necessary distraction for us. Day 5 of spring break begins in the morning.

Sunday, March 13, 2016


This weekend has been all over the map. Mira actually had a really positive day yesterday - she was very vocal for some reason, babbling up a storm, loudly at times. Despite being stuck indoors the entire day because of the rain, Mira managed to make the best of it. She was happy and talkative, making her infamous 'dragon' noises repeatedly. The dragon is where she sticks her tongue out and makes this heavy exhaling sound, like a fire-breathing dragon. It is an indication that she is really happy - she typically will make this sound when she finishes a bottle, is happy to be back in her bed, or is just excited overall. I snapped a few pictures of her, as she was doing the dragon multiple times in a row.
In addition to all of the vocalization yesterday, Mira was exercising her abdominal muscles most of the day, by doing lunges and crunches in her chair. She wanted to be in constant motion - again, being trapped indoors made it difficult to keep her entertained, but she was content just racing around, having the flexibility to lunge forward when she wanted. She has her lap belt on of course whenever she is in her chair, but we rarely put her chest piece on, especially when we are just in the house. It is a pain to adjust, as she so often slouches down in her chair, not to mention, it gives her the option to move forward, which she obviously loves to do.
While yesterday was great, today was a bust. Mira just had one of those days where she was not happy just hanging around the house. Thus, we ran some errands this morning just to get out, which Mira quickly tired of, getting really fussy on the drive home. We went for a long walk after lunch, which Mira enjoyed for a bit, but her relentless eye-rubbing forced us to come back in. It was really overcast outside today, so we are still guessing as to why Mira is so adamant and consistent some days about scratching her eyes and other days, she doesn't touch them once. It has to be neurological in nature, as her seizures were nearly non-existent yesterday, but today, she was having a ton of significant startles and lightning jerks. Some of her startle seizures this morning were so severe that she knocked her bottle clear across the floor during one and another, gave me a solid jab to my jaw with her fist. These lightning jerks come from out of nowhere and there is no way to prepare yourself for them. It is really a concern during transfers or when we are putting her glasses on, as she can seriously injure herself if it came at the wrong time.

Not that daylight savings had much to play into this, but Mira basically hit a wall late this this afternoon. By the time we got her out of the shower, she was inconsolable. She was wailing at the top of her lungs and was just plain miserable. Considering she had 2 bottles before bath time, we figured hunger wasn't the issue, yet after a 20-minute cry-a-thon back in her bed, we prepared another 2 bottles. She chugged those back very quickly, but kept on crying afterward. She finally settled down after about 45 minutes after her bath - she was simply done for the day.

Thursday, March 10, 2016

Exhausted Mira

Good thing spring break started today, as Mira seemed to collapse at the finish line, of this marathon week she apparently had. It's not like we did anything strenuous or exhausting this week, but Mira was pretty much done with the day around 6:00pm. She had her usual cranky hour late in the afternoon, had a few bottles, and Sarah put her down in her bed, where she basically passed out. She was tired. We had to wake her up about an hour later to get her meds in her, which she took, quietly rolled over, and went right back to sleep. She has been tolerating school the past few days - again, nothing eventful, just Mira going with the flow. After her multiple seizure day on Tuesday, everything has been fairly quiet since. She is still having a fair amount of morning myoclonics, but she is at least avoiding any tonic-clonics the past two days. We don't have any plans over spring break - some years are just like that I suppose. Traveling with Mira is difficult, combined with having to work all next week, it makes for a low-key break, for the kids anyway. Sarah will have her hands full at home trying to entertain everyone.

Tuesday, March 8, 2016

Dentist + Bottles

Mira has been having some up and down days to start off the week. At school, she has been doing very well in the morning and early afternoon, but quickly looses steam toward the end of the school day and gets really fussy. Mira hadn't been having any big tonic-clonics for almost a week, when she had three of them at school today. It's so random - you can almost tell as something is building up a few days prior. She becomes increasingly irritable and it culminates into a big seizure day, where she has multiple episodes very close together.

Her afternoons at home continue to be somewhat volatile - I think she just wants some down time in her bed after being at school, which is difficult for Sarah to do, as she is picking up Eli (like today when the weather is bad) after Mira gets off the bus. She has been staying up later the past few nights and is very anxious to race around the house in her chair. She does a serious amount of rocking back and forth, exercising her abs in the process by repeatedly lunging forward as she is racing.

We took all three kids this morning to the dentist, which overall, went very well. No cavities or issues for the boys and while Mira was reluctant to open her mouth, once she did, they managed to do a decent check-up. She didn't have a ton of patience for it, but she didn't hold a grudge once it was all over. It is a minimum 3 person job -  one person to hold Mira's head back and still, another person to hold her arms down, and the dentist or hygienist of course to do the check-up.
Mira has been getting really steady at gripping and holding her bottle. Once you get it to her, she can usually keep it going for a solid 30-45 seconds at a time. She will occasionally let it drop, so you can't venture too far, but she is getting increasingly consistent with it. We have noticed she has been drooling a ton lately - like a faucet. We have no idea why, as her trip to the dentist this morning didn't indicate anything strange going with her teeth or gums.

Sunday, March 6, 2016

When It's Time, It's Time...............and That Means Right Now!

Mira had another great day, well most of it was. We spent a lot of time outdoors again, taking advantage of this spring-like weather. We seemed to have catapulted into warm temperatures over the past few weeks and there is no looking back. Today was very windy and not as much sun, which strangely, had an affect on Mira's eye-rubbing episodes. We were out at the park and Mira had a series of bouts with batting at her eyes - there was no stopping her on a couple of occasions, you just had to wait it out until she got her fix. Ironically, we ran into a therapist from CCVI at the park, who recommended getting some plastic stays for Mira's glasses, to help keep them on better. Much to my surprise, she was so kind as to run them by the house later in the afternoon - thanks so much, Lisa! The stays look like this:
Despite the episode late today (which I will get into) Mira had a fantastic weekend. She was al smiles outside today, similar to yesterday. I have never seen her smile so consistently than I have the past few days. She has really been in a great mood - she has been having a lot of startles and spasms (lightning jerks) especially during our walk today, but still no big tonic-clonics for several days now. Still, something began bothering her late this afternoon. After dinner, Mira's happy streak came to a screeching halt, as she erupted into a crying frenzy for the 90 minutes. She was not happy in her chair, her bed, and certainly not in the bath. At one point, she was just wailing at the top of her lungs, tears streaming down her face - she was so worked up, she was coughing and gagging.
I'm not sure where all of this irritability came from, as she slowly ramped it up over a period of 15 minutes while we were having dinner, so much so that we had to quickly finish to deal with her wailing - she was seriously unhappy. She may have just hit a wall today and decided she was done with this weekend. Once she finished with bath time and was back in her bed, she quieted down, the crying subsided, and eventually, she fell asleep.

Saturday, March 5, 2016

Solid Day Out

Mira had a great day today. Minus a brief fussy spell this morning, she has been all smiles, mainly due to the fact that we spent a lot of time outdoors, either on a walk or in the park. We didn't attempt a 5-mile journey up to Target today (although the weather was equally at pleasant as last weekend) but instead we just ventured around the neighborhood and down to the grocery store. Mira was constantly smiling and kicking her feet. She had some difficulty keeping her glasses on again this morning at the park, but managed to keep her hands away from her eyes the entire time we were out walking. And it was sunny - I figured the sun would was so bright at times that she surely would be trying to rub her eyes, but she didn't even try once. Perhaps she is getting used to the glasses or they are helping deal with the contrast - whatever the case, it nice to not have to constantly play defense with her hands the second we walk out the front door. Mira was so worn out by the end of the day, she crashed by 7:00pm and was basically snoring minutes later.

Wednesday, March 2, 2016


Mira has been having difficulty keeping her glasses on these days. We aren't sure whether they are loose or she is just getting better at batting them off her face. At school, her teacher mentioned it today - they had to do some of her therapies with her glasses off, since they kept falling off her face so much. We don't put them on her for the bus ride to school, for that very reason. It would be difficult for the driver or para on the bus to constantly keep watch to make sure she doesn't knock them off and damage them. At home, we haven't noticed them coming off any more than usual, but then again, we are doing a lot of redirection with her as she reaches for them.

Mira had a decent day up until after lunch. She has been in a pleasant mood in the mornings, but she seems to tire toward mid-afternoon and ends up pretty irritable on the bus ride home. She was tired before dinner tonight, drank a few bottles and wanted nothing but to be in her bed. She didn't have any big seizures at all today - just a few random twitches and spasms.