Monday, February 29, 2016

Mondays


In retrospect, Mira and I did some serious walking yesterday. While she wasn't with me for all of those 11+ miles, she was for our long journey up to the store, around the neighborhood, and at the park. I think that is the most steps I have had in awhile and my legs reminded me of that fact this morning. As far as Mondays go, today wasn't Mira's best - she was fine at breakfast, but apparently she was off and on irritable at school until lunch. Her teacher said she was having a lot of strong myoclonics and jerks all morning long, but they eventually subsided around recess/lunch time. They were able to get outside, which of course, Mira enjoyed thoroughly - legs and arms going everywhere. The weather was so mild again today that her therapist was able to do her vision therapy outside. She again was fussy on the bus ride home and was not in the greatest mood at dinner. She was obviously battling some neurological issues all day and continued to do so until she went to bed.

Sunday, February 28, 2016

A Day of Walking



We had another great day of weather here in Kansas City - it was a little colder and the wind picked up quite a bit from yesterday, but it was still a fantastic day to be outside. Mira and I were feeling adventurous today, so we decided to walk all the way to Target, which was 2 1/2 miles from our house, which of course, made it a 5-mile round trip journey. Fortunately, there aren't too many hills and there are sidewalks the entire way. Mira was all smiles on the way there - the wind was gusting at times, which got her laughing and very excited. I think the noise from all of the traffic on some of the busier streets captured her attention too, as she was doing a lot of scanning. On the trip back, Mira finally became worn out and was quiet. She wasn't upset or tired, just going with the flow and chilled out. She did however, do a considerable amount of eye-rubbing on the return home. It could have been because she was tired or it could have been the sun - it's difficult to tell. We came back from our long walk and put the headphones on her, to see if she would enjoy listening to some music. We did manage to go out again to the park next door, which Mira caught a second wind and did a fair amount of kicking and moving around. She didn't have any big tonic-clonics today, but she had countless jerks and twitches. She probably had 40 or 50 spasms and jerks just on our walk alone.

Saturday, February 27, 2016

Practically Summer

Who ever tells you global warming isn't real should have spent today in Kansas City. It was unseasonably warm again, reaching 72 degrees this afternoon and it's still only February. Last weekend we had uncharacteristically warm weather - not quite in the 70's, but very warm for this time of year. Tomorrow we are expecting more of the same, with some added wind. This entire winter has been extremely warm, having only a few days in the single digits. Not that I am complaining, as we spent nearly the entire day outside, but it is definitely strange to have so many days like this and it has been perfect timing with all of it happening on the weekends.

Mira was very quiet all day. No irritability whatsoever, in fact, on one of our walks today, she was laughing and giggling at certain points. She was batting at her eyes a little bit more today, probably because there wasn't a cloud in the sky and the sun was intense, even for February. After a long walk, Mira took a nap and we went out to the park for a couple of hours before dinner. She was content just being outside in the fresh air. We had to pick a shady spot, when we weren't walking around, to keep Mira's eye-rubbing to a minimum. She continues to tolerate her glasses a majority of the time and when she does try to get at her eyes, she gives up easily when the frames get in her way. All of our walking and being outside must have wore her out - she was yawning by 7:00pm and once she was in bed, she was asleep within a few minutes.

Thursday, February 25, 2016

More Episodes

video


Mira has been having some hard tonic-clonics at school the past few days - the same number of seizures at about the same time. Wednesday at school, she had a big seizure about 10:00am and another one around noon, then continued to be 'off' the rest of the afternoon. Her fists were clenched and her legs extended outward, which is a sure sign of extended seizure activity. She continued to be out of sorts last evening, then had a repeat performance of seizures today at school. Sarah took a couple of videos of her late yesterday (unfortunately, I was in Louisiana and just got back this afternoon) and sent them to me. These episodes of arm and leg extensions are all too familiar - she often has sweaty hands and feet, along with a myriad of odd movements. She always seems very distant during these episodes, making it difficult to connect with her at all. When I arrived home this afternoon, she gave me a big smile when I started talking to her, which was so nice to see. Mira's episodes seem to have ended today, but is still having big tonic-clonics throughout the day.

Tuesday, February 23, 2016

Ophthalmology - Part 2

Yesterday morning we had a second ophthalmology appointment, where we had a different ophthalmologist, one who has more experience with CVI, give Mira a more in-depth exam. Mira did great during the entire ordeal, which involved having her eyes dilated and having to wait for another 45 minutes until they could actually do the exam. While they did find some slight differences in her prescription from her initial appointment last month, they did not find anything unusual or abnormal with her eye structure or functioning. The ophthalmologist told us that there also nothing that would indicate that there was anything degenerative in regards to her vision either. No one seems to know why her prescription is so high - it just is I suppose. There are any number of scenarios that could happen in the future, as far as Mira's vision is concerned. There is the theory that since she has become so accustomed to not being able to see much (as at some point, her vision did start to decline over the past few years since her last exam) that getting her glasses may help her form some connections, neurologically speaking. On the opposite end of the spectrum, if she does have some sort of permanent genetic disposition or storage issue that is affecting her vision, her CVI will most likely continue to prevail - a neurological/visual disconnect that is acting as a deterrent for her to process anything. It's only been a few weeks since she has consistently been wearing her glasses and we are hopeful that they will ultimately help in some capacity.

Sunday, February 21, 2016

Transfers

I certainly didn't anticipate having nearly 70 degree weather here in Kansas City, in February. Saturday it was amazing outside and we took full advantage of it. After spending most of the week in New Brunswick, where it was in the high teens, coming home to a weekend of sunshine and shorts was fantastic. We tried to spend as much time as we could outside with Mira - we went to the park next door for several hours, then followed it up later with some walks around the neighborhood. Mira was loving it. Her legs were always in motion, kicking and stretching the entire time. She did not want to stay still. She was in a positive mood most of the day, but hit a fussy spell late in the afternoon, which is common. She kept having a lot of lightning jerks throughout the day, but nothing major. One of the things I noticed when we were outside, was that her eye-rubbing had decreased dramatically. Whether her glasses were acting as a deterrent or not, she only tried to rub her eyes on a few occasions and with some subtle redirection, it was manageable. Today we weren't able to get out, as the temperature dropped back down into the high 40's and the sun wasn't out much. Mira was having a lot of strong myoclonics in her bed too, which we thought it was better to not rock the boat by getting her outside. She was also pretty irritable today, possibly from the seizures this morning.

One of the things we are having to be more cognizant of with Mira, is transfers. While Mira's weight hasn't changed much over the past year, she is getting taller and more unpredictable while transferring her, especially into her bed. About a month ago, I was lifting her out of her bath chair and really twisted my back in the process, giving me some terrible muscle pains in my lower back, that took several weeks to finally heal. Today I was putting her into her bed and again I strained my back in the same exact spot. Mira's bed is a canopy bed, which zips on the sides, yet it is positioned in such a way in her room, that I typically transfer her on the short end, which is against the wall. It's difficult to describe without seeing it, but it requires some gymnastics to transfer her from her chair into the end of the bed. I think I am going to have to reevaluate which end of the bed to put her in. Transferring her on the side is easier, but when it comes to actually changing her or getting her dressed, it makes it more difficult. Mira tends to stretch out as flat as a board, which makes it extremely awkward to try and lay her down without straining. The bottom line is Sarah and I have our own methods for transfers and mine just isn't working so great these days - I am going have to make some adjustments with my approach, as my back is not appreciating it any more.

Thursday, February 18, 2016

Seizure Plan

We've had another up and down week with Mira and unfortunately, Sarah has been having to do it all by herself. I had to go up to New Brunswick again Monday evening and returned just this afternoon. Hopefully, this is the last extended Canadian trip I am going to have to go on for awhile. I have been having to go to the east coast about every three weeks since last August and it has become extremely tiresome for everyone.

Mira had a fairly uneventful Tuesday (since the kids didn't have school on Monday) but Wednesday was apparently a rough day. The nurse at Mira's school again called Sarah within the first hour Mira was there, informing us that Mira was having a bunch of tonic-clonics in succession. Having to pick Mira up at school early is becoming a recurring theme these past few weeks. Sarah and I are trying to figure out what exactly is going on, as there have been some changes this school year with the nursing staff. The population for kids with special needs has increased because of district consolidation efforts, so there is now a designated nurse just for that area of the school.

Sarah and I feel like we need to revisit Mira's seizure plan with the school, since we are getting called much more frequently by the nurse, updating us on Mira's seizure activity. Of course we want to be notified when there is an emergency or when Mira is having seizures associated or combined with breathing issues (which she never has had in the past) but we feel like many of the times we are picking her up from school (with the exception of her episode last week), she is really just having a typical seizure day. We have never been able to fully control Mira's seizures and most likely, we never will. They are simply part of her day and we expect them to happen. Some days are heavier days than others of course and on occasion, she will have an intense day where she is having multiple seizures, but 98% of the time, she rebounds from the seizures and they are isolated enough to not cause an alarm to go off for us.

We know Mira better than anyone - we know when she is having a difficult day and when we need to intervene. It is difficult for the school to have the same level of understanding with Mira and certainly difficult for us to make a determination what is actually happening, based on a phone conversation. Thus, the safest option is to simply go pick her up. We feel as though this is ultimately what the nurse wants - it gives her a level of comfort to know that she would be better off in the hands of those who know her best. However, it creates a dilemma for us sometimes. For instance, when Sarah went to pick her up on Wednesday, she was perfectly fine by the time she arrived at the school, which was within 20 minutes of the nurse calling her. When Sarah showed up, Mira was acting as she always does, even kicking her feet as they were leaving the school. No clammy hands and feet, no altered state of mind, and no additional seizures from that moment forward. From the sounds of it, all of the seizure activity was probably just part of a typical day for Mira. However, what they are witnessing at school may be something they are not used to seeing, and as expected, the school is taking a precautionary path by notifying us of clusters of seizures or repetitive activity. Again, it is difficult for the school to sometimes assess what exactly justifies a phone call and what is just a 'normal' day for Mira. Regardless, I don't think it would hurt to revisit Mira's seizure action plan with them, so that we all potentially have a mutual understanding and a plan in place. Everyone has the same concern in mind, which is Mira's safety.

Sunday, February 14, 2016

Outside with New Glasses

Mira had been having a nearly seizure-free week, up until today. She hadn't had any big tonic-clonics until last Monday, which of course, was a very rough day for her. We hadn't seen any all week, until this morning, when she had a few really strong myoclonics, then continued to have a ton of lightning jerks throughout the day. She was in a fairly decent mood and fortunately, it was warm enough to get outside and enjoy the weather. We went for a long walk this afternoon, which Mira was very enthusiastic about. This was the first time we had gone outside for an extended period since Mira has had her glasses. She didn't seem to react any differently to her surroundings with them on - she still did a fair amount of eye-rubbing, which she always does when we are outside, but I had to run interference with her hands the entire time we were on our walk. Mira was constantly trying to get to her eyes and in the process, kept pushing her glasses off. I really had to keep a close watch on her - each time she would raise her hand to scratch, I would redirect her hands, which worked about half the time. I suppose I was hoping she might react differently with her glasses and have a new perspective on being outside, but this first walk was not any different than any other time. The walk ended up wearing her out, as she took a long nap afterward and woke up really cranky. She was not up for taking a bath or doing much of anything and she made it known - detesting very, very loudly.

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

Energy

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

Rebounding

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

Semi-Emergency

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 boys 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.