Sunday, August 9, 2015

The Long Trip Home

We are finally back home, after a very long drive across five states, from Northern Kentucky back to Kansas City, all in one day. We hit the road early this morning and even with gaining an hour (from Central to Eastern time zones) we still managed to stretch a 9-hour straight shot into an 11+ hour drive with stops. This was the first time we had made this trip with Mira and after the grueling 225 mile cry-a-thon on the way out, we weren't too optimistic that this was going to be an easy return trip. We had the luxury of stopping overnight in St. Louis on the way out but on the way home, we had decided long ago to try and make the trip in one day.

Much to our surprise, Mira did very well. We were about 100 miles in when she started getting restless and fussy, so went from her toy, to bottles, to stopping to get her out of her chair and walking her around whatever gas station parking lot we were at to refuel. This seemed to keep her happy for almost 5+ hours! She had a few brief fussing spells here and there, but for a majority of the trip, she was content and/or napping. Toward the end, the last 100 miles or so, she just became tired of being in the car, slowly ramping up the crying until we pulled in the driveway. Who could blame her - at that point, we were all exhausted from being in the van so long.

We had a great trip - we had fun day at the water park, did some shopping, relaxing with family, and were able to get to downtown Cincinnati and the Riverwalk yesterday. Thanks so much to Aura, Ware, Addy, and Truman for letting us invade your home for the week and for entertaining us! It wasn't without some work. Having Mira out of her element is often a challenge, particularly for transfers and diaper changes. At home, most of this is frankly easier and less taxing on Sarah and I, since we have the luxury of having her elevated bed, which alleviates picking her on and off the floor for changes. After a few days away from home, my back and knees were looking for an alternative means of transfer for her - it wears on you. I was however, able to catch up on quite a few naps in between all of the lifting and activities.

Mira continues to do well on the B6, with her seizure activity slowly diminishing, at least this week. Since the end of July, she has had only one tonic-clonic, which is pretty amazing, considering she was having 2-3 a week just a month ago. She is still having the occasional myoclonics, particularly in the morning, but they are few and far between, Yesterday, while were down on the riverfront, she had a few very quick sort of 'lightning' jolts every so often - almost like startles, more than anything. I haven't really seen anything like it and they only lasted a second. Other than that, we have seen a minimal amount of seizures over the past 10 days.

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