Grateful For This New Normal

“Since these episodes aren’t seizures, that means Lola hasn’t had a clinical seizure since she was a baby,” I said to my husband last night. He agreed and we both sat silent for a minute. Just let that sink in. No clinical seizures in more than five years. How incredibly lucky we are to be able to say those very words. We say clinical meaning seizures that are actually visible. A past EEG showed her to be having subclinical seizures as she was sleeping, but the last two EEGs did not detect those subclinicals. What is most fascinating is that we have no idea what a clinical seizure would even look like, if Lola were to have one. The type of seizures she had as a baby were called infantile spasms. Those seizures came in clusters and were very different looking than most. It is just one more interesting component to this chapter in our story as it’s now been a few weeks since we received the news that Lola’s bizarre episodes are not seizures after all. It’s as if the last two years were just a long weird test of the commitment we have to our daughter, our perseverance as parents and our trust in the medical professionals. We’ve moved on quickly and Lola has too. She now sleeps in her own bed, we’ve been weaning her off of her anti-epileptic drugs, her strict diet is now gone, and we I no longer live with gripping fear that a seizure will take our precious daughter from us. She is prone to seizures and she may always be, but our life can’t revolve around what ifs anymore. For right now, she’s seizure free and that’s the best feeling in the world. And with each weekly wean, it’s as if we are seeing our daughter come out of her shell. How perfect of timing since she’s at Access Behavior Analysis‘ clinic each and every day doing intensive ABA therapy. We are watching our daughter blossom right before our very eyes and we couldn’t be more thrilled. We will never get the last two years back yet we can’t live with regrets. We are just happy we didn’t subject Lola to more drugs and interventions. She’s progressing beautifully and we are thankful.

July2016-16

Lola and Kristen have quite a bond.

Lola and her ABA therapist, Kristen, have quite a bond.

Our summer seems to be filled with countless appointments for Miss Lola and that’s OK. We are trying to get down to the bottom of what these episodes are and how, or if, we need to be treating them. I won’t speculate on the direction doctors are leaning because there are too many unanswered questions. But let’s just say we believe we are finally heading down a path that seems to be the most plausible explanation. Since Lola failed two hearing screenings and because mild hearing loss is a common symptom of her genetic condition, Bosch Boonstra Schaaf Optic Atrophy Syndrome (BBSOAS), she has been seeing an ENT in addition to an audiologist. Recently, she had an overnight sleep study in order to be cleared for a sedated ABR (auditory brainstem response) which seems to be the most effective way to detect and gauge hearing loss in children with BBSOAS. In addition to this ABR, she’ll have a follow-up MRI of her brain and ears to detect for any abnormalities. We don’t anticipate anything coming of the MRI, but at this point we’d simply like to check things off of the concern list. One of her doctors recently said, “She’s a mystery, but the best ones usually are.” We whole-heartedly agree. She is a spectacular human being and I’m so very grateful to call her mine.

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While the summer has been busy, we always try to take our kids on mini-adventures whether it’s finding a new playground (blog post on that soon), exploring a park or basking in the sun while at the pool. We want them to look back at their childhood and relish in the memories we created for them. A few weeks ago, we packed the kids up in the car for a road trip to see Rob’s parents in southern Indiana and Illinois. While we don’t get down to their houses often, since traveling with two young children isn’t easy, we always enjoy connecting and catching up. We spent part of a day at the Mesker Zoo in Evansville, Indiana.

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Afterward we went to Pop’s farm where the kids were free to roam and explore nature. It is in moments like seeing your son try to climb a tree and your daughter feeding chickens that remind you how lovely it would be to live away from the city. A more simple life where one connects with the outdoors. I want that for my kids someday. Lola was particularly enthralled with every riding machine her grandpa had in his barn. She was definitely in her element.

You can't see the huge smile on her face!

You can’t see the huge smile on her face!

July2016-19

A little four-wheelin' action for Mom and Dad.

A little four-wheelin’ action for Mom and Dad.

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We also spent part of our time with Rob’s mom at her home in Illinois. Upon walking outside, you can see bunnies hopping along the corn fields and the sounds of countless birds fill the warm air. It’s tranquil and serene. You feel as if you can live on the land and need nothing else. I love that both sets of grandparents provide such a wonderful experience for our children.

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July2016

What is better than catching bubbles?

What is better than catching bubbles?

A girl and her grandma.

A girl and her Grandma.

Have you heard of MyIntent? It’s an organization that believes in beginning meaningful conversations by sharing more truth and inspiration to one another. Rob and I learned about MyIntent through a 60 Minutes segment and I was immediately enticed by their jewelry. I kept asking myself, “What would my word be?” What word would mean the most to me? What would inspire me? What would lift me up? What word would begin a conversation? Rob bought me a bracelet and I chose the word QUEASE. Here’s what I wrote about my word:

“My daughter, Lola, has disabilities that affect most every aspect of her life, but she’s our shining star and her light has always guided the path. She’s begun to use words and some are quite easy to understand as well as purposeful, but others can only be understood by those of us who know her. When she really, really wants something, she says, “QUEASE!” To me, QUEASE sums up our life. Lola’s path may be different, but there is meaning behind it and there’s a purpose.”

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So I have to ask, what would your word be?

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