Saturday, October 22, 2016

The Many Faces of Mira

It's been a busy and hectic past few weeks - I have been traveling quite bit, with trips to Massachusetts and New Brunswick taking up most of my work weeks. Sarah left for Los Angeles this morning and will be back on Tuesday, so in a sense, we have been passing the baton to try and stay on top of things. Mixed in between all of the travel, we have had conferences for all three kids, at three different schools, all at different times throughout the day on both Thursday and Friday. Mira has been having some off and on days - mostly on, where she has been in a positive mood, but she had an awful day last Sunday to keep it all interesting. She was really irritable all day last Sunday and we couldn't figure out why, until about 10:00pm, where she had a massive seizure in her bed. The aftershocks from the seizure went on for another 30 minutes. It was an awful one - no wonder she was in such a bad mood, as she was probably dealing with the pre-seizure activity all day. This week has been much calmer, with the shortened week because of conferences, Mira has been taking advantage of the down time. We have been taking it easy today, just running errands and trying to stay close to home. Today, Mira was making some seriously silly faces - I took these pics all within a span of 30 seconds. Serious face, dragons, laughing, contemplating, and so on - holding her ears for some reason the entire time!

Sunday, October 9, 2016

Living in the 1850's

We ventured out on Saturday and went to the Indian Festival, which is an annual celebration of Native American culture and food, which just happens to be just a few miles from the house. Sarah actually grew up just blocks from the festival, which she attended as a kid, but we had actually never been as a family, until this year. It turned out to be a lot of fun and we had perfect weather along with it. Jonah was able to spray a fire hose, go on a horse and wagon ride, and eat massive amounts of kettle corn. Even Eli was mildly entertained, I suppose by the kettle corn alone. Mira had a great time too - she really enjoyed being out in the sun and we did a serious amount of off-roading in her chair, as most of the tents and displays were out in the fields or grass, which made navigating her chair a workout for me, especially when going uphill. 

Walking through the historic house they had on display and experiencing the wagons, houses, and other period artifacts had me thinking about children with disabilities, of all things. I imagined trying to raise a child with Mira's issues, in that era - with the barest of essentials, the lack of therapies, and wheelchairs, and just the general living conditions that people endured back then. I couldn't imagine trying to raise a child with special needs with so very little and in such harsh conditions - we are all very accustomed to having everything so accessible and available, that it really put things in perspective. Pushing her up the hill seemed so trivial afterward. We had great weather, no mud, an actual wheelchair to guide us through, and food in our stomach as we worked our way around the festival. In 1850, living in a tiny one-room structure, with a leaking roof, outdoor plumbing, with no diapers, no safety beds, and no access to medication would have been brutal for a child like Mira - simply surviving the winter would have been the priority. 

Thursday, October 6, 2016

Feeling Better

Mira has been doing a little better over the past few days, although she had a pretty rough day at school earlier this week. She had one of those days where nothing made her happy - both at school and at home. However, she had a much better day overall today. We had some relatives visiting in from Vermont today and Mira was as calm as can be, for over an hour in her chair while she sat with us in the living room just talking. That's a rare event, considering late afternoons are typically not her favorite time. She did great today though!

Sunday, October 2, 2016

Late Afternoon Crumbling

After a stellar couple of days in a row (all part of a couple of good weeks) Mira slowly crumbled today. This morning started off great - she was full of dragons and very happy. We went for a walk this morning and another one right after lunch, which Mira enjoyed - she was kicking and making this rhythmic humming noise every 5 seconds (she has been doing this weird humming noise a ton lately - I can't really describe it) until we got back home. She took a nap this afternoon, but woke up in a really sour mood. She was wailing and crying non-stop for about an hour, all through bath time and through a couple of bottles for dinner. Once she was back in her bed, she settled down, but she was really ramping it up for awhile - tears streaming down her face, grimacing facial expressions, etc. Not sure why she was so worked up, because she hasn't done this for the past few weeks that I can recall. She is quietly resting now. Hopefully, she will have a smooth day at school tomorrow.

Saturday, October 1, 2016

The Dragon

Mira has been in a great mood all day today. We started off by running a bunch of errands in the morning and Mira was content the entire time. We dumped off all of our stuff from the store and headed out for a walk right after lunch and Mira continued to be full of energy. She was having some subtle myoclonics during our walk, but otherwise, seizures have been minimal. She took a brief nap after we returned home, then we did some racing around the house and again, Mira was as happy as can be. Throughout each of our outings and even when we were just hanging around the house, Mira was consistent with one thing - vocalizing. We call it her 'dragon' noise, where she sticks her tongue out and makes this heavy breathing sound, much like a fire-breathing dragon. She was doing it constantly today - it is a sign that she is happy and in a good mood and she did it so many times today that I lost count. She was just in a solid mood all day long. She was even doing repeatedly around bedtime. Something interesting also happened late this afternoon. At one point, I offered her a bottle around dinnertime and she purposely pushed it away and shook her head no, side to side! It could have been coincidence, as I could not get her to do it again, but it was certainly something I have never witnessed before. She has always pushed away bottles when she doesn't want them, but she has never done this with her head side to side to indicate no. I couldn't believe it - again, it could have been unintentional, but it really did seem deliberate and purposeful.

Thursday, September 29, 2016

A Special School Moment

Despite her episode over the weekend, Mira has been doing extremely well over the past week. She has been in a positive mood lately (in fact, for the past few weeks, with some minor exceptions) and has been very attentive and focused. At school this morning, her teacher presented Mira her name card in circle group, which she does every day, but today was different. Mira reached out with both hands, took the card, and dropped it in the basket that was sitting on her tray. Her teacher and paras were shocked and they all erupted and said 'yay Mira' and started clapping. Mira actually smiled with all the clapping! Everyone was so amazed at her reaction, that they clapped again, and Mira reciprocated once again by smiling! It was one of those rare moments where Mira had an unsolicited reaction to something. It has always been extremely difficult to communicate with her, as she rarely has a purposeful reaction to any situation or stimuli. Such an amazing day for her - I wish I would have witnessed it!

So what have we been doing differently these past few weeks? If you go back and read my post earlier this month on pyridoxine, (or for that matter, any of my posts on pyridoxine) - that would be a good place to start. For now, I want to enjoy Mira's moment today and hopefully not jinx everything by possibly attributing it to the supplement therapy we started her on at the beginning of the month. More soon...........

Sunday, September 25, 2016

Great Saturday - Off Sunday

We have been trying to get into the habit of getting out every weekend - anywhere; somewhere, just to get out of the house. The boys are always fairly pessimistic about going out on the weekend, as they would rather just be plugged into a screen the entire time, which is what we have been trying to avoid. They of course need their downtime on the weekends after being cooped up in school all week, but they also need to have some diversification of activities. So, this weekend, we went down to the annual Plaza Art Fair, which is a fairly big event that shuts down a large portion of the Plaza here in KC. The weather was perfect and despite Jonah's incessant griping about walking, the heat, his hunger pangs, and whatever else he could complain about, we managed to have a decent outing. Mira was in a great mood the entire time, in fact, she has been doing really well the past few days - that is, until last night. If I have said it once, I've said it a thousand times - epilepsy sucks. She was doing awesome all day yesterday - not a single fuss or whimper, was full of energy, and had a decent appetite. After our Plaza outing, another walk, and a brief stop in the park (I realized that she is waaaaaaaaay too tall for the swing in the park now - see picture above) yesterday afternoon, she went to bed, very uneventfully. However, about 9:00pm, she had a massive seizure in her bed, which we heard from the living room (our house is very small, so we can hear everything from almost anywhere) and rushed in to find her completely rigid and clammy. She continued all day to have a continuous episode of dystonia, complete with odd, rhythmic movements in her arms and torso, cold, clammy feet, turned inward, and her being in a very altered state, mentally. She would barely drink anything this morning and had a completely dry diaper. She continued to be dry up until this afternoon, which we finally started to see signs that she was coming out of these dystonic events, which she has had in the past. By later afternoon, she started kicking her feet more, finished off a couple of bottles (albeit very slowly) and finally had a wet diaper. Today was just a polar opposite of yesterday - epilepsy robbed her of having an entire solid weekend.

Sunday, September 18, 2016

Art Outing

It's always a challenge trying to find things to do as a family, especially on the weekends. During the week is always hectic, with the kids in school, but we still manage to have the occasional dinner outing or open house at school, but they are few an far between. Last weekend we took the kids out to a park on the Missouri side and this weekend we decided to try and hit the Nelson-Atkins Museum, here in Kansas City. I had been to the new addition a few times for meetings and such, but had never actually been to the older portion, not seen the extensive historical collection of work there, even after living in the area for almost 20 years. Sad, I know. Sarah has taken art classes here over the years and even the kids have been to the museum a few times, either with Sarah or through school field trips. Needless to say, the kids all did very well - Jonah kept asking when we were going to leave, but at least Eli found enough to peak his interest, especially in the Asian Collection, his favorite room. Mira was vocal and happy throughout the entire excursion, making consistent dragon and moaning noises in every room, usually when we were walking. We went outside and saw the reflecting pool, which Mira particularly enjoyed, because of the long trek over the uneven cobblestones surrounding the pool. Overall, it was a positive outing for everyone.

Mira has been doing well this past week. She did have a couple of tonic-clonics at school on Tuesday, which completely drained her the rest of the day. She slowly turned things around the rest of the week and was in a positive mood the entire time. I had to travel again part of this week to Massachusetts again, but fortunately got out of a trip to Cleveland today and Monday - yet have another trip to Louisiana toward the end of this upcoming week, It's been a heavy travel month, but it it slowly tapering off. 

Mira and I went out for several walks today, which she very excited about. She was very patient at the store, which usually makes her restless and irritable when we are at a standstill. All of the activity must have worn her out, as I had to wake her up just to have dinner and a bath. She went right back to sleep after all that.

Sunday, September 11, 2016

This Week

Mira had a pretty decent week - after her rough weekend of crying and wanting to be in a constant state of motion, she seemed to calm down this week, especially at school. She has been increasingly vocal, mostly when she is moving. We have been doing our fair share of walking this weekend, as the weather has been spectacular both days. Since I was in Boston on Thursday and Friday, Sarah was ready for a much needed break on Saturday, so I took all three kids out to Loose Park, over on the Missouri side. Despite a few eye-rolls from Eli, Mira, Jonah, and I went and fed the ducks and geese for a while, while Eli put his headphones on and ventured off around the park. There is nothing less entertaining than going to a park with your two younger siblings, from the perspective of a 13 year old. I remember that age all too well. He loves his independence. The rest of us had fun feeding the ducks, then hitting the slides, and finally finishing the afternoon off by getting hamburgers at a place down south back on the Kansas side. Mira absolutely loved the park, kicking her feet and making a ton of noise the entire time. The weather was way too nice to be inside.

This afternoon, we tried going up to Westport, not only to hit their annual weekend art fair, but also to have lunch at our favorite Indian restaurant. Neither one of those activities sat well with all three kids, but especially Mira. I think she has mad because she was ready to take a nap, while we were all set to head out the door. Bad timing led to her being fussy at the restaurant, with Sarah and I passing the baton, eating in shifts - one person eating, while the other was outside walking Mira in circles. Some outings are great - others, not so much. They all survived the outing and Mira and I ultimately ended up taking advantage of the cool temperatures, heading out for yet another walk.

Monday, September 5, 2016

Same Amount of Walking - Same Result

Today was very similar to the last few days before - Mira was unhappy and always wanted to be moving. We walked down to the village after breakfast and Mira was making her consistent moaning noise during our entire walk. Even when we stopped in a couple of stores to do some shopping, she continued making that noise, which of course, turned a few heads. She was content once we were back at home, for about 20 minutes. We did some walking in the the house, then more walking after dinner - in between all of our outings, she was mostly fussy. She hated every minute of her bath and only finally settled right before bed. Such a long, long 3 day weekend.

Sunday, September 4, 2016

So Much Walking

After a solid, nearly irritable-free week, the wheels feel off the wagon this weekend. Mira has been very unhappy the past two days, with no particular pattern to her irritability. Yet there has been one thing that seems to lift her spirits - walking or even more accurately, staying in motion. We have been on numerous walks, to the tune of 3-4 a day, in an effort to try and keep her happy. It only works for so long and frankly, it is exhausting pushing a 75 pound chair, a 70 pound child, and a backpack full of whatever we picked up at the store, uphill, often during the hottest part of the day. The second we come in doors and she is motionless for more than a few minutes, she starts crying. It is extremely difficult to stay in a constant state of motion with her and we can only walk indoors for so long (again, thanks to hardwood floors, we have a built-in 'track' that we circle around, from living room, through the 'foyer',  and into the kitchen/dining room, and back again, to complete our loop) before someone gets tired - usually it's me. When she is moving, she has been increasingly vocal, making this consistent, rhythmic moaning noise every 3 or 4 seconds. It's definitely a sign that she is enjoying herself, as her legs are stretched out (as in the pic above) and kicking, almost in unison. We often hear a lot of her infamous 'dragon' noises, which is a definitive marker of happiness for her. We went on a couple additional brief walks this afternoon and continued indoors for a bit, but she soon tired of everything, which sparked a wail-a-thon for about 45 minutes before dinner. She hasn't had any tonic-clonics for the past several days, in fact, her last one was at school early in the week, so I suppose it is boredom or a lack of variety that is frustrating her. It was an exhausting weekend. Hopefully, tomorrow we can find some additional activities to keep her busy.

Tuesday, August 30, 2016

Super Chilled

Mira has been really quiet the last two days. This morning, I had to wake her up for the bus, even after going to bed early last night. Once I had her dressed an in her chair, she was briefly enthusiastic about her bottle, but quickly faded after she was finished, so I put her back in her bed for another 20 minutes before the bus arrived. The second I put her back in her bed, she immediately folded in half (her comfort sleeping position) and fell right back asleep. Not surprising, she had a quiet and chilled day at school, not even objecting to getting into the Kidwalk, nor seemed to mind heading to the library with one of the other classes in the middle of the afternoon. She continued to just want to relax in her bed after dinner and a bath - she wasn't even up for racing around the house much. Some days, she is content just relaxing.