Baby Steps

Friday, July 3, 2015

A long, overdue update

Imagine the most difficult choice or trial in your life. Imagine a serious threat to you or a loved one. Now imagine living that moment every minute of every day for 1,326 days. When forced with a serious threat your body goes into fight or flight response mode. We all know how it feels. If you choose to fight your brain and body go into survival mode. Your hypothalamus tells your sympathetic nervous system to kick into gear to help you survive your present danger. Your adrenaline pumps, your blood pressure rises and all that matters is getting through the situation and returning to safety. Your brain doesn't rest, it is difficult to sleep, eat, focus and think of anything else.  On a smaller scale, we have been in fight response mode since Piper's first seizure. It is relentless, exhausting and wearing on our souls.

Epilepsy is an emotional roller coaster of inconsistency, sadness, fear and anger. We just want to take the pain away and help her be happy. Lately, it has become very hard to do either. Seizures are not consistent and with the recent VNS implant it has been another huge challenge with no end in sight. What we currently know is cannabis oil has been the best line of treatment, hands down. It worked best in conjunction with a seizure medication specifically for infantile spasms, Sabril. Unfortunately, the "rare" side effects of this medication were a reality for her as she began to have vision loss from the drug. It wasn't worth it to us to take away any vision she may have so we took her off of it. We prayed the VNS would take the place of Sabril without the harsh side effects. Not only has it not taken the place of Sabril but has made seizures worse. For the time being, the VNS is not working and we can only pray that over time it will. She never seems content or happy like she used to be and it may be from the VNS or the fact that she is no longer on sedating medication. She whines, cries and just seems uncomfortable all day. We hates seeing her like this and we are at another crossroad, another decision that keeps us up at night...what do we do next? We have done everything we can with adjusting cannabis oil and honestly it has helped us through the really rough times. We feel her current doses are working the best for her and we will continue to keep things were there are since we have exhausted our options. We still feel like it's just not good enough. We have seen better times and are striving to get there again. We hate the idea of starting another seizure medication but we also have to think about the quality of life for our family. We spend every waking hour discussing the next steps and we are honestly sick of talking about it.

In the past month, seizures have morphed into something out of a horror movie. If you haven't seen a bad one, I hope you don't. They are violent, with ear piercing screaming that will stop anyone in their tracks. They last up to thirty minutes and she is completely exhausted for hours after. We have also hoped she didn't feel pain when she seizes, and now it's pretty clear she does. They are often startle seizures causes by everyday noises that cannot be prevented. I cannot tell you how it feels to sneeze and cause a thirty minute screaming, drooling, violent convulsion. It's an emotion no one should feel and it happens many times a day. It is something Evan is starting to understand and it breaks our hearts. We walk around on egg shells praying we don't cause the next episode and you can cut the tension with a knife.

With all of the changes in seizures, the past few months have been very hard for Justin and I. We have so much going on and hardly any time or energy to deal with it all. We have become masters of distraction, masking, and any other defense mechanism that just gets us through the day. We push the limits in all areas of our lives because our limits are always being pushed. (have I mentioned we are training for a half marathon/marathon?)We have been conditioned to thrive on stress and problem solving seems to be our on mode of conversation on most days. Not all of these things are bad, just makes it almost impossible for us to relax and shut our brains down in order to rejuvenate for the next day.

Last month,we had a very rough week and I began to pray for help, not for seizure control like I always do but for help in any form. Within the next week, God gave us sign after sign, people were there almost immediately wanted to help us in so many different ways. I have spent many moments in my life questioning my faith, wondering why things are the way there are. Every time I feel like giving up, something amazing happens and my faith is restored. People I barely know have contacted us asking how they can help.  People in our church and community have reached out to us and we have breathed a sigh of relief for the first time in a very long time. We are not people who ask for help, especially me. I have always just done things on my own, only because I don't want to bother other people with my problems. For the first time I am welcoming help from others, and I should have done so a long time ago.

Some of the amazing things that are happening in the midst of these trials have helped us focus our energy on the positive. Our amazing church now has a special needs ministry and we are able to attend service just the two of us. We know Piper is in good hands and they are loving on her which we know makes her happy. We are able to finally start connecting with people and making new friends. We also have some amazing people who have offered to watch Piper so we can spend time with Evan, have a date night or hang out with friends. We were blessed to have Justin's mom come out for a week and watch Piper so we could take Evan to the beach. Since Piper can't leave the state with her medicine, going to the beach has never been an option so this trip was very special. Although it makes us sad she couldn't go it was refreshing to spend five days without seeing, hearing or thinking about seizures. The memories we made will last a life time. It's amazing how you cherish things so much more when your life is full of so many challenges.

We also had a friend of mine from high school who contacted me and started a huge fundraiser for our next big purchase, a wheelchair van. Piper is a very tall girl, she is at the point where I have a lot of trouble lifting and transferring her to the car. It makes me question if the trip out of the house is worth the work. I don't want to get to the point where I stay at home all the time because it's too hard or dangerous for me to get her in the car. She cries when we transfer her so if we can limit the times we do so it will make her happy too.  It's bittersweet, but we have started the process of getting a wheelchair van. It will help so much with her quality of life and ours too. We have been adamant about giving her typical experiences and this will only help us to be able to do so. This will be a huge purchase and we are trying to get a newer converted van so it will last a long time. The used vans we are looking at are around $50,00-60,000 before taxes! Thanks to so many of you we have already raised money to put towards this purchase and we are so thankful. I cannot tell you how much it means to us to have continued support from our family, friends and even people we don't know!! It is a constant reminder of the great things we have in our life and helps us focus on the good. We will continue to focus on the good, be thankful and give our kids the lives they deserve and thank you all for helping us to remember what is important!!

Here is the link to the fundraiser if you want to share it, don't feel obligated to donate, many of you have already helped us so much in the past 3.5 years!