Monday, October 31, 2016

This Week + The DME Company

Mira has been doing really well over the past week or so. She has been minimally irritable and we haven't seen a tonic-clonic since her big one last Sunday. This past weekend we went on some long walks outside, since the weather has been so pleasant, and Mira was loving every minute of it. She was consistently making this humming noise and kicking her feet the entire time. Yesterday at bath time, she was even smiling some, instead of her usual cry-a-thon. It's been a nice week for her.

On a side note, her tilt mechanism on her chair broke about 2 weeks ago. When something goes wrong with her chair, we tend to have the same dilemma - do we call the only durable medical equipment (DME) supplier here in Kansas City, which we have had numerous terrible experiences with over the past 10+ years, or do we try and fix it ourselves? I could not bring myself to even consider picking up the phone to deal with said DME company and seeing how we are going to be forced to deal with them later this week (which I will get to in a moment) I figured I wanted to limit our interaction with them as much as possible. Avoidance is the key, so I started down the path of repairing her chair myself, which I have done in the past.

So I took the tilt mechanism apart on her chair, figured out why it was malfunctioning, researched the part number online, and ordered the part direct from the supplier. It was quick and painless to do, only the part took 10 days to get here. I dismantled her chair this evening and installed the new tilt mechanism. It works like a dream and I enjoyed a drink, not only for fixing her chair, but for successfully avoiding any communication with the equipment company. I will gladly shell out $114 for a part and install it myself, than deal with the DME again. Can you tell I dislike them?

Unfortunately, we are forced to deal them this week. We have an appointment (one we scheduled 3 months ago) to get Mira fitted for a lightweight stroller and we really have no choice but to go through the seating clinic. This appointment will inevitably will create another forced marriage with the DME, due to their monopolistic practices. Their customer service is atrocious and over the years, they have bought out every other DME company in the area, creating a mega-company that specializes in poor communication, terrible service, and questionable accounting practices. Having not had to deal with them for the past few years and still very jaded, I truly hope their business model and customer service has improved.

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.