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.