Friday, February 12, 2016

The Long, Busy Week

It has been a very long week for everyone, especially Mira, so I will keep this brief. She started the week off Monday by having to come home from school (basically right after she got off the bus) since she was having multiple seizures, for which we had to administer Diastat to stop at home. This was after contracting a UTI the middle of last week, for which she is just now finishing off a round of antibiotics. Tuesday Mira had a scheduled appointment with endocrinology, which involved a Lupron injection, which she has been getting every three months. Wednesday and Thursday I was balancing deadlines at work, while we were trying to plan Eli's birthday, which is tomorrow. We ended the week by having an IEP for Jonah in the morning and another trip to the pediatrician's office for Mira to do a follow-up urine sample, for which she had to have a catheter to actually get the sample. Add in all of the early morning conference calls (on the Atlantic time zone) at work, as I am dropping the boys off at school, and just the day-to-day errands picking up prescriptions, I think we are all completely fried by this week. Sarah and I did a fair amount of tag-teaming or passing the baton this week to try and tackle all of the appointments and commitments - we are all ready for the weekend.

Tuesday, February 9, 2016

Mira's New Glasses

Mira had a busy day today, starting the day off with a Lupron shot, ending up getting to school mid-morning, We had it scheduled months ago, along with a routine endocrinology appointment. Nothing revealing at her appointment - it was fairly uneventful, including the shot. Mira had a decent day at school, a little up and down, but nothing significant. The surprise of the day was when we were notified that Mira's glasses arrived, ahead of schedule! Unfortunately, it was late in the afternoon, which is typically Mira's hardest part of the day. She made it through the fitting alright, but the technician had to do the adjustments between bottles - Mira was hungry and that took priority. The glasses fit her very well and we were pleasantly surprised that even with her having such a high prescription, the lenses don't look bad at all. I think the frame helps out a ton in reducing the visual thickness. Sarah and I tried them on briefly and they are astoundingly strong. After we were home and Mira had some down time in her bed, we got her in her chair and put the glasses on, while just walking around in the house to see what she would do. She did a fair amount of scanning and it looked like she was trying to focus on things, but it was difficult to tell. She didn't try to pull them off and they stayed on really well - no slipping down the bridge of the nose or getting crooked when she rubbed her ears. I hope they start helping Mira connect with her surroundings. I have a feeling that she has been so conditioned to not being able to see everything clearly, that it may take some time for her to start processing her environment and making those connections.

Monday, February 8, 2016

Awful Seizure Day

Today was a very rough day for Mira. She woke up this morning and was unusually vocal. Not in the fact that she was vocalizing as she has been doing a lot of that lately, but rather the way she was doing it - not quite happy, yet not irritable. The best way to describe it was that she just sounded 'off'' - just not herself. I got her dressed and in her chair, while she continued to make these weird sounds. I tried giving her a bottle with her meds, but she absolutely refused - she wouldn't stop clenching her teeth and when I managed to get her to take a few drinks, she just held it in her mouth for a few seconds, then deliberately spit it out the side, meds and all. I couldn't get her to take her antibiotics at all and barely managed to get her Lyrica in, which she also spit out, twice. She was flat out refusing, which is very atypical for her. Eventually I gave up and just started packing her bottles up for school, when she paused, leaned forward, and started having a full-blown tonic-clonic seizure. It seemed to go on forever, but it was only about 45 seconds, with a solid 5-10 minutes of post-ictal activity. All of this about 30 minutes before her bus was supposed to arrive. When she has a big seizure like this in the morning, which isn't very often, it always presents a challenge for us. Is this an isolated seizure? Should we send her to school? Is she going to rebound from this quickly? Do we wait it out and send her later? It's always difficult to predict where this is heading. We decided to send her to school, since she seemed to come around fairly quickly after the seizure activity subsided.

Unfortunately, she had a bunch more seizures, all when she arrived at school. The nurse called Sarah about 8:30am and said that she had at least 5 or 6 additional involved seizures. Sarah drove out to the school immediately to pick her up and she had another one as she was transferring her into the van, then a series of smaller scale ones on the way home. Sarah ended up getting her in bed and had to administer Diastat to stop the cycle. Her breathing was never an issue, so it wasn't necessarily an emergency, but definitely something that needed to be interrupted. Mira has had a lot of similar days like this over the past year, but the frequency and intensity of her seizures today were enough to not even second guess giving her Diastat. They were intense, consistent, and all within a short time period. We haven't had to resort to using it since her birthday last year (of all the days it could have been), but before that, it had been years since we had to use it. Again, we have seen an upward tick in these episodes over the past year, which is very saddening.

Mira spent a majority of her day reclined in her chair, so we could keep an eye on her. She was extremely drowsy all day from the Diastat, which was to be expected. She didn't have any additional episodes afterward and wasn't overly clammy or sweaty, which is good. She was however, very rigid at times and also floppy and lethargic at other points throughout the day. She was slowly kicking her feet before bedtime, which was encouraging to see some signs of energy, albeit at the end of the day. She managed to drink a few bottles and I was able to get her antibiotics in at dinner time. We did her back from the clinic this morning and they confirmed she does in fact have a UTI, thus starting her on the antibiotics was the right call to make last week. She is already half-way through the round now, so hopefully the antibiotics are knocking it out.

Sunday, February 7, 2016

Weather Patterns + Mood Patterns

Today seemed as though Mira's mood was changing with the weather today. This morning she was in a decent mood, vocalizing in her bed, and overall, she was happy. She didn't particularly enjoy her bath, but she rarely does. Then the winds started up after lunch, the temperature started to drop, and Mira's positive mood began to crumble. So, we packed up and went for a walk again, since it was still fairly warm, yet overcast outside, making it feel colder than it was yesterday. We spent a fair amount of time walking down to the store, getting a few groceries, dropping them off at home, then going out again, just walking around the neighborhood. Mira was thoroughly enjoying all of it - legs constantly kicking and her body always moving. I thought she would eventually wear down, but she kept on going. We finally came back home and took a break, which was fine for about an hour, then she became very irritable (which has been a trend now, running three days strong) so we tried bottles and more walking, but Mira wanted nothing to do with any of it. She ended up going to bed really early and is still cashed out. Maybe it was a delayed reaction to all of the walking this afternoon.

Saturday, February 6, 2016


Mira has been showing a lot of energy for the past two days - yesterday it was pterodactyl noises all day long and today it was kicking. She was much less vocal today, but what she lacked in talking, she made up for in movement - a ton of lunging in her bed and constant wiggling in her chair. It seemed like every time she saw a window of opportunity to slouch in her seat, she managed to squirm down in her chair, even with her lap belt snug across her legs. We went for a long walk outside to help her burn of some of that energy and Mira took full advantage of it - she was kicking her legs straight out in front of her, a majority of the time we were out. Thanks to our mild winter so far, we have been able to get out more weekends than usual. She was a little irritable after dinner, but I think she was having some stomach woes, possibly from the antibiotics. She had a few lightning jerks today, but little seizure activity other than this morning, when she looked like she was going to having a big tonic clonic. We were racing around the house when she stopped kicking for a few moments, paused, then extended her arms out a bit like she was going to start having one, then relaxed her body after about 5 seconds, then went right back to kicking.

Friday, February 5, 2016

IEP + One Female Pterodactyl

Today was just a complete blur - come to think of it, the entire week has been equally as crazy. We started off this morning with Mira's annual IEP at her school, which went very well. No big surprises and no changes in therapies for the next year, yet there are changes in her ESY (extended school year) summer session, which we knew were coming. The reduction in the amount of class time Mira will receive (and all other kids participating in ESY) has been reduced for the third consecutive year, which brings the district down to a couple of 3 week sessions, 3 days a week, for 3 hours a day. It seems almost pointless, considering what she does during the school year. We only have one person to thank for this eroding emphasis on teaching and learning - Governor Sam Brownback, who continues his relentless destruction of public education in the State of Kansas. But I digress.

Mira was able to hang out in her classroom with a couple of paras while we had our meeting. We spent a significant portion of the time discussing Mira's vision and the possible scenarios that may arise when she gets her glasses. Sarah and I are excited about the potential of Mira's vision being improved and what the future might bring for her. Who knows what will happen, but as I stated in a few earlier posts, the fact that her vision is so poor right now, anything will be an improvement with what she is seeing right now. It will be interesting when she finally puts them on. Needless to say, we were happy to see that there weren't any changes with her IEP so that we can see what her vision and processing might bring.

I had to head off to work after the IEP and the day continued to rush by, as I played catch-up from a busy week. Sarah texted me a few brief videos of Mira throughout the day, capturing her what can only be described as, pterodactyl noises. She was making this bizarre, almost squeaking noise all afternoon long - by the time I was home from work, she had taken a break from it, but immediately started back up once I had her in her chair and began racing around the house. She was very animated all day today, doing a ton of kicking, and of course, imitating dinosaur noises.

Thursday, February 4, 2016


Since Mira's episode on Tuesday night, things have settled back down. We started her on a round of antibiotics, while we are waiting for the results back on her cultures. I'm really surprised that Mira willingly drinks the pink slime, which is sulfamethoxazole, mixed into a liquid suspension that tastes like bizarre flavored bubble gum. I was skeptical with the first dosage, but she was a trooper about it - she has to take two 15ml doses of it, one in the morning and one before bed, which is a ton of liquid. Mira is usually very hesitant to drink anything that isn't at least room temperature and seeing how this is refrigerated, I'm even more surprised that we have been batting 100% on her doses since Wednesday morning. She has been having much better days since Tuesday - happy at school and for the most part, happy at home. She was a little fussy tonight, but just seemed really tired. We are gearing up for Mira's IEP in the morning, which is always an adventure.

Tuesday, February 2, 2016


Mira threw us a curve ball today. After a very sleepy and lethargic day yesterday, she started the day off by waking up with a completely dry diaper. This was unusual, but I chalked it up to her not wanting to drink much last night - she only had one bottle right before bed, but drank at least two (that I can remember) about an hour or so beforehand. She was in a pleasant mood this morning, not so much as a whimper. After she was on the bus, things started to take a turn. Her teacher said she cried the entire morning, not really taking a break, other than to drink a few bottles. She continued to have a dry diaper all morning, then at some point after lunch, the floodgates opened and she completely drenched herself - pants, shirt, socks, everything - she had to be changed out of all of her clothes entirely. She was quiet the rest of the afternoon at school, but when she arrived home, she again became extremely irritable. This was no ordinary, routine fuss, but it sounded like she was in some significant pain. She pulled her legs up to her chest and refused to bring them down. Sarah changed her, but her diaper was again dry. The diaper changing experience really caused her some discomfort and she was wailing like she had never heard her before. Sarah became concerned and called me at work about 4:00pm. By the time I got home, about 15 minutes later, she looked as though she was in some serious pain. She was crying in a way that was pretty alarming to us, again, we had never heard this type of cry from her. We called her pediatrician and decided to immediately take her in to the after-hours clinic, for starters, to see what was going on. So we called grandma to watch the boy and we packed Mira up to take her in. When I transferred her to her chair, she continued to refuse to pull her legs down - she was curled up in a rigid fetal position and was still wailing in pain.

We managed to get her into her car seat, but it was difficult to buckle her, since she was defiant in keeping her knees at her chest. About 5 minutes into the ride to our pediatrician's office, she became very quiet, slowly relaxing her knees down into the seat. By the time we arrived, we realized that she again just released everything in her bladder at once, soaking her pants and her seat in the process. We had a change of clothes, so we were prepared. At this point, after pasting together everything that had happened thus far and after talking to Tisha (our dear friend, who happens to be an RN) we figured we were probably dealing with a UTI. Mira has never had a urinary tract infection up to this point, for that matter, I don't think she has ever had an ear infection.

Ironically, by the time we checked in at the office, got Mira changed in one of the exam rooms, and finished giving a download to the nurse, Mira was worn out and simply relaxing in her chair like it was just another day. They did a catheter to draw some urine, which came back normal, except for the fact she had a low white blood cell count. However, her urine smelled incredibly foul - this could be due to her holding it in for so long, but it could also be attributed to something else. As a precaution, they gave us a prescription for an antibiotic and the office is going to run some cultures on her urine, so see if there is something there. We have no idea why she has been holding to go to the bathroom and then releasing everything at once - it could be related to a UTI, but we aren't sure at this point. They are supposed to get us lab results in the next 48 hours, but in the meantime, Mira is going to start the antibiotics.

Sunday, January 31, 2016

Just One of 'Those' Days

Mira had pretty rough day today. She was in a decent mood when I got her dressed and out of bed, but by the time I had her in her chair, she became very quiet, and slowly started having a big tonic-clonic before we were even in the kitchen. She then had two more additional tonic-clonics, all within about a 45 minute span. All of these intense seizures completely knocker her out. She spent the rest of the day rigid, altered, clammy, and very reserved. We were on the fence about giving her Diastat or Trazodone to break the seizure cycle, but fortunately, she stopped having any involved TCs the rest of the day, at least we didn't see any big ones - just small twitches. We thought we hear her have another TC about 4:00pm, when she was in her bed, but we couldn't really tell. She was awake the entire day, just staring into space and becoming very sweaty and rigid in her bed or her chair. We kept a close eye on her, as we have seen her have many days like this. Her temperature was completely off all day and she was repeatedly clenching her fists so much, that she gave herself a few small blisters on her left hand.

Saturday, January 30, 2016

Glasses Fitting

We took Mira out first thing this morning to get her fitted for some new glasses. We probably spent a solid 45 minutes just trying on frames that might work for her. Because her prescription is so high and she is so nearsighted, frame selection is important, so that she doesn't have an enormously thick edge on the edges of the lenses. Having a thick edge could potentially be distracting to her, so we were limiting ourselves to looking for smaller sized frames that would reduce the size of the lens. We finally settled on the ones she is wearing in the picture above. Minus the logo (they are obviously demo lenses) she looks good in them and the fit works well for her. It was difficult to find a frame that worked well with her nose, ears, and of course, her impeccable fashion sense. Much to our surprise, she not only tolerated having the glasses on, but she didn't try to grab or swat them off, not even once.

Sarah has been looking into some behind the ear pieces that will hopefully help keep them on her face, in the event she tries to pull them off or they slip down the bridge of her nose. Granted, the frames fit well and there is little to no movement on her face - the ear pieces will just be a precautionary measure. The dispensary told us it was going to take up to 2 weeks for them to fabricate the lenses. I can't wait until they are ready - I truly hope they have an impact on her vision and her perception of her surroundings. I can't imagine having everything outside a foot beyond your nose, appearing as a complete blur. So, out of curiosity, I searched online for a vision simulator and found one here. I'm not sure how entirely accurate it is, but I wanted to understand what Mira is potentially seeing, so I tried plugging in her prescription and this is what the simulator came up with:

The image on the left is supposed to be 20/20 vision and the image on the right is supposedly what Mira would be seeing, based on her prescription. The first simulator I found wouldn't calculate her prescription, citing it was 'beyond the range of the simulator'. If this simulator is even remotely accurate, it is frightening what little Mira is able to currently see.

Thursday, January 28, 2016

Fussy Mornings

Mira has been waking up early in the morning full of fuss. The last two times I have gone in to get her out of bed, she is crying and wailing. She instantly clams up as soon as I walk in the room, but she is really wanting to be heard - vocalizing her disapproval of well, something. I think she is probably just bored and wants a change of scenery. Ironically, she is happy for a few minutes after she is dressed and out of bed, but then goes right back in to being crabby again. This has been the routine nearly every morning this week. She is content when she is finally on the bus and the report back from school is that she is consistently happy in the morning, so who knows. Afternoons at school..............not so happy.

We are planning on taking Mira to look at some glasses and frames in the morning. We found a provider in our network, which is conveniently the same optometrist that Sarah and I go to. They have a decent selection of frames and lenses, so we will see what they have to say about Mira's prescription and what they might recommend. We have a couple of other options if this place doesn't work out. We also did manage to get an appointment on the books to see another ophthalmologist in a few weeks at CMH. Hopefully they can provide some further insight into Mira's vision.

Tuesday, January 26, 2016

Planking Octopus

Getting Mira dressed and transferred into her chair in the morning is a workout. We don't need expensive gym memberships to break a sweat, as Mira gives us plenty of exercise every morning. Mira has a couple of patented moves, but her favorite is to extend all of her limbs out as rigid as a board, almost like she is planking. Arms flat and at her side, she almost looks like she is doing some sort of bizarre horizontal dive. She does it mainly when you are trying to get her dressed, transfer her from her bed, or adjust her in her chair. When trying to get her dressed in her bed, she refuses to bend at the waist, so pulling her forward basically slides her off the end of the bed. In her chair, if you unbuckle her lap belt to try and get her coat on or off, she sees it as an opportunity to go rigid, which causes her to gradually slide down to the base of her chair footrests - if she isn't at an incline and/or if you don't have the brake set on her chair, you are in deep trouble, as Mira will end up on the floor in 2 seconds.

In between her planking exercises, Mira likes to periodically squirm her arms and legs in every direction when trying to get her dressed. She will keep her arms stiff for a moment, then suddenly thrust them upward at the most inopportune time and if you aren't careful, you might get punched in mouth. The same goes with her legs - she curls them up at her waist, then will suddenly shoot them out in unison. If you aren't standing off to her side, you will inevitably get kicked (with both feet mind you) straight in the groin. It only had to happen to me once, to know where to properly stand. She also has one other rare move, where she will squirm over on her side, trying to get on her stomach - it doesn't matter where you are in the process of getting her dressed or changed, or transferred - she does not discriminate. I like to call it the 'octopus' move - twist and turn, using every limb and body part you have, to get into another position.

Mira continued playing the role of the planking octopus this morning and stayed in a decent mood until this afternoon. She was super irritable in the van when Sarah was picking up the boys at school, continuing to wail in her bed after she was home. Then she had two enormous BMs and was perfectly happy the rest of the evening. Fairly easy to tell what the issue was today.