It's only been 23 months since I've put my thoughts down on "paper." That beats the 2.5 years from the previous one. Last time I blogged, the girls had just turned 18. Now...they are knocking on 20's door. My oh my...how the world has changed since we were last here.
We finished the Fenfluramine clinical trial at Mayo Clinic the summer of 2020 when the drug was FDA approved. (Celebration pictures above!) The girls continue to do very well with this new addition. It's really been a life-changer for them and we are thankful we were able to participate from beginning to end. Shortly after we finished that trial, we started a new one at the University of Iowa. In the beginning of this trial, the girls were given a seizure-alert watch that they wore for 6 months. We had to keep track of seizures and sleep and that information was compared to the information the watch electronically sent to the manufacturer. It was an interesting and somewhat frustrating experience. Let's just say we weren't sad when the six months were up. We continue to participate in this trial without the watch. The other portion of this study is to see if cognition changes with Dravet patients as they age. Every six months we travel to Iowa City and the girls are given cognitive testing and we complete questionnaires about how we feel they are faring in many different cognitive/emotional/physical areas. We will finish this study next summer. We did find out at our last visit there is a new medication for Dravet patients entering a phase 3 clinical trial later this year that we may participate in. We thought we had aged out when the girls turned 18, but this one is open to patients up to age 21. So...we shall see. We have a unique opportunity to help science (yay science!) given the girls are identical and also present identically in their seizure patterns. It is a commitment though. We've literally been in a clinical trial since 2015.
The girls are doing very well. Their small seizures have been greatly reduced (75%ish). Their large seizures have decreased by 25-50%, depending on the month. Their communication has increased by leaps and bounds. They are speaking like true teenagers. "You're pissing me off" is said regularly around here...and not by Matt or I! It is amazing to see how they can articulate how they are feeling. They still have some emotional outbursts, but for the most part are able to put into words how they are feeling and exactly what they want. Speaking of what they want...Lindsey wants a car. A blue car. And she wants to drive that blue car. She has it all figured out...she knows how to drive and all we need to do is buy her a car. This has been an emotional struggle for us when trying to explain to her why she cannot drive. We've tried to explain many different reasons with the last resort being she can't drive because she has seizures (because she just won't let it go!). That ends with both of us in tears when she says, "I won't have any more seizures, I promise..." Sigh... Lindsey is also very interested in being part of every conversation, whether she's invited to participate or not, and is busy, busy, busy. Her questions are never-ending and she wants to know everything. She's our social butterfly and always has a hug to give.
Lauren has no interest in driving, or leaving her recliner in the living room. Yes, it's HER recliner, just ask her...no wait, she will tell you! And her TV, her remote to the TV, which she has mastered, and uses to watch all of her favorite shows. She enjoys playing on the computer, reading books and just chillin' by herself. She isn't a social butterfly like her sister, she's the chrysalis - in her own world, doin' her own thing. She gets hangry and has some pretty serious emotional outbursts on occasion. We're still trying to figure out the best way to handle these...it's hard and exhausting. Other times, she is the sweetest young lady you ever did meet and we treasure those times.
They will be entering 14th grade this year at Southeast Polk. We are thankful they are still able to go to the place they love and will be really sad when the day comes that they age out at 21. That thought literally sends me into a panic... In order to participate in adult programming, they will need to transition to a different waiver program through the state, called the Intellectual Disability waiver. We've been on the waiting list for this waiver for nearly 3 years (October 2, 2018) because there is no funding available to open up the wait list. The next slot to open on the waiver is for someone who has been on the wait list since December of 2017... I can only imagine how many individuals are sitting on the waiting list...it's heartbreaking and infuriating. I just hope our girls have a slot by the time they turn 21.
The "big kids" are doing well! They are both thriving in their adulthood and we love having them come to visit. Delaney's adopted a new kitty who literally rode to work in the engine of her boss' car one day. She'd adopt all of the kitties and puppies if she could...she has a heart of gold. She's still working at her alma mater, Coe College, and recently received a promotion! Mason has been helping out a lot this summer providing respite for the girls. He's such a kind and patient young man. How many 21 year old's would be willing to care for their disabled little sisters? Not many... He has a very sweet girlfriend, Kennedy, and they are enjoying life together. We are truly blessed with these "kids".
Matt and I will celebrate our 25th anniversary in October. That means we've been together more than 1/2 of our lifetime. Dang... We're still going strong, making each other laugh, and doing the best we can in this crazy life we've been given. We are blessed...
As I type, I am on the eve of starting a new decade. 50...how did this happen? I just turned 40! Oh well, I'm embracing it and thankful I'm here to celebrate another year. This past 18+ months have been hard on all of us. We're living through a pandemic that has lasted longer than anyone anticipated. The divisiveness we are facing these days is disturbing. I've said this before, much to my husband's dismay, opinions are like a$$holes, everyone has one. We keep our a$$holes to ourselves, and so should we keep our opinions. Imagine what this world would be like if we stopped worrying about everyone else, and just focused on ourselves. I can only imagine... Be kind, because kindness can change the world. And Lord knows...this world needs some changing.
Thanks for following along on our journey. Be well and love one another.
Kim
