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Our lives changed forever during lunchtime on Friday, September 27th, 2019. We had decided to meet as a family for lunch to celebrate the coming weekend, and Ruby had her first major seizure on the sidewalk outside of a local restaurant. At the time, we had no idea what had happened, and it was terrifying.
We ended up at the Norton Children’s Hospital, where we spent the next 6 days. Initially, her seizures continued to worsen, with up to 40 per day. Eventually, after exhaustive testing and through a combination of medications, her seizures were controlled enough to return home.
Ruby is a vibrant child – smart, spunky, and lots of personality. However, her life changed that day, and she has had to navigate challenge after challenge since then. Since her seizures started when she was so young, we don’t believe she has any memory of life “pre-epilepsy” – that’s both a blessing and a curse. It’s a blessing in that it’s all she’s ever known, and hence she’s not had to deal with a big change in her life. It’s a curse in that she’s always been different from the other kids around her – her life revolves around medication, bed times, and a strict diet.
She’s only had a brief stint (a few months) where we believe she was mostly seizure free. She typically has around 5 seizures a day. The majority of her seizures happen while she sleeps. though this changes as she grows and changes.
She’s currently taking 4 medications, which all have side effects that affect her life – as such, things like school are much harder for her than they would otherwise be (she’s currently on a 504 plan at school to help meet her needs).
We’ve changed her care to the Cincinnati Children’s hospital – she takes trip after trip there, so much so that we feel like it’s a second home (I think our boys now like the Bengals more than our home team, the Colts!). Her doctors there are great, but they’ve not been able to make much progress in her case – in fact, it’s gotten worse in the last year.
She’s on a very strict diet, which the whole family has adopted. The “diet,”as we prefer to call it a “lifestyle,” includes no sugar or processed foods. While it’s great for her in terms of her health, it does have the effect of isolating her – she has to take her own food to things like parties at school or birthday parties. She can rarely just eat the same things as all her friends.
Her seizures appear to be triggered by a lack of sleep, so we have to be very strict with her bedtime – she’s not able to do many things that would require her to be out past 8:00 PM. As she’s starting to get older, this is starting to come at the expense of many things with her friends.
And finally, it’s affected our family in a big way. While it’s made us stronger in some ways, it’s also caused us to spend more time apart – at this point, we don’t feel comfortable leaving her alone without a parent, especially overnight. This has caused us to do things separately – one parent with our older boys, and one with Ruby.
Currently, Ruby is considered to have an intractable case of Epilepsy, meaning that it is not able to be controlled by medication. This has led us down the path of looking at surgical options – we’re still early in this journey and taking our time, considering the seriousness of brain surgery
Despite the challenges, there have been some blessings that have come out of her situation – one of these is the support that we’ve received from the Epilepsy Foundation of Kentuckiana. We’ve found an incredibly supportive community, both with resources and emotional support. We couldn’t imagine navigating this journey without them!
Right now, we still don’t know why Ruby is having seizures. This is frustrating, as it makes treating them much more difficult, but it also gives us some hope – there’s always a chance that she could stop having them one day, just like she started. That alone is enough of a reason for us all to keep fighting
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