Thursday, August 6, 2015


I won't sugarcoat it - traveling with Mira is challenging and exhausting. Mira has never been on a plane, as there are too many variables to take into consideration to have her confined to a seat for even a couple of hours. Considerations that would have never entered my mind, until having a child with significant special needs made such ideas necessities, rather than mere 'what if' scenarios. What if she cries and wails the entire flight? What if she has a diaper blowout? What if she has an enormous seizure? What if she gets altitude sickness? What if, what if, what if. Some of the same issues you would consider when flying with an infant or a small child perhaps, the only exception being is that Mira is almost 4'-9" tall and over 70 pounds. You physically cannot deal with a diaper change at 30,000 feet in a tiny bathroom that barely fits one average size occupant.

That being said, flying is simply not an option for us. So, when considering a trip, we are limited to places we can drive - reasonable travel distances and reasonable destinations. The same considerations with flying surface of course, but at least we can try and manage them while on the road. It is still a challenge, but at least we have options. So this week, we embarked on our longest journey in the van with Mira thus far - a two stage trip to St. Louis and Northern Kentucky.

On the trip from Kansas City, we had the option to break our final destination into two legs, stopping in St. Louis,which is a mere 4 hour drive from KC. That was the easy one. St. Louis to Kentucky was over 6 hours. The drive for everyone across Missouri was uneventful. Mira has been on this trip before and not having to stop once, made it a fairly easy commute. She was fussy for a few parts of the drive, but certainly manageable, with bottles mixed with intermittent toy distractions. The toy rigging involves someone (usually Sarah) sitting in the middle row, in the middle seat, holding Mira's toy strapped to a lapseat cushion, having her play until she tires of it and wants something else. When we did manage to get to St. Louis, she was tired of being in the car and started ramping up the crying. She could not fully decompress and it took her a solid hour or so to finally quiet down and fall asleep.

Mira must have had a rough night, because what followed the next morning, was a full venting of all of Mira's frustration, tiredness, constipation, and whatever else was not agreeing with her on the trip thus far. We hit the road as early as we could, with Mira getting increasingly fussy. Then, as we headed toward Kentucky, she proceeded to cry for the next 225 miles. Yes, that's 225 miles, roughly 3 1/2 hours, listening to her cry, wail, and whimper. Three stops, one about every 30 minutes, to try and soothe her with bottles, her toy, and eventually, Benadryl, did nothing for her. No seizures, no twitching. Just crying. We were all set to give her Trazodone, which we use in cases like this, where she simply cannot decompress and find her happy place. Small problem with that idea - we forgot to bring it with us. We stopped for ear plugs, then another stop for earphones to double up on the ears, and another for the Benadryl, was enough to create the feeling that we were either not going to mentally survive this trip or were actually never going to arrive sanely in Kentucky. We would need to stop at the closest highway asylum and check ourselves in. It was brutal. Eli, Jonah, Sarah, and myself were all completely spent and we only a little more than half way there.

Finally, the clouds parted and Mira stopped. For the last 2+ hours, she was quiet as can be, only waking up from her catnaps to try and glance out the window. Unfortunately, we had to rig a beach towel over the window, as Mira had broken off the pull shade on her side of the van and since she was relentlessly rubbing her eyes, we had to cover the window to keep her wrists off of her upper eyelids. She literally rubbed her right eye raw, until we stopped (for a forth time) to conjure up the makeshift window shade to keep her from doing it. It stopped about 95% of the rubbing, but she now has a blister above her right eye.

Arriving in Kentucky was like hitting an oasis. Mira was so happy to be out of the van, we were happy to not have to listen to her wail for the last 2 hours of the trip, and we knew we didn't have to drive anywhere else for a bit. At least not today. Where we are staying in Kentucky too, is fantastic - acres of room for Mira to spread out and get comfortable. The lower floor of the house is almost as big as the entire footprint of our house altogether. We are so grateful for Sarah's sister, husband, and their family, to have us invade their house, after just relocating here a few weeks ago. I know it has been a stressful move for them and to have guests so soon after getting (re)settled in so recently, we are probably adding to the chaos of just having relocated across the country, twice in the last six months.

Seizure wise, Mira has been doing very well this week. At the end of July, she had a very similar day that she had on her birthday - lots of myoclonics and temperature issues. Since then, she has only had one tonic-clonic, yesterday morning about 6:00am. Today she has been having more jerks and myoclonics than usual, with her toy seeming to aggravate and provoke some seizure activity. We have been limiting her toy because of it.

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