Creativity & Epilepsy

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

A passion for creativity was something I hoped to pass on to Colleen. From a child to adult, I have always had a love for drawing, music, paint…anything in which I could create something of my own.

As Colleen has gone through school, her works of art decorate our home’s walls. Whenever music plays, she’s dancing, and even when it’s not playing, I want to ask her what music she has in her head as a smile alights her face as she bops back and forth.

One of the biggest challenges for us is that Colleen is non-verbal. I can give her these things to do, and I think she really enjoys them. And I have started to wonder myself; how can I use my creativity for a greater good; to bring epilepsy awareness. I have made a career in graphic design, and I have wanted to start and awareness campaign. Something that would just inspire people, almost like the way the Ice Bucket Challenge brought awareness to ALS. What can I do to help? What can we do to help?

So, as this month of the Epilepsy blog relay draws to a close, it is my hope to inspire all who read this to go out there and do something! If you can bring knowledge to just one person, I think we will have done a great thing because that knowledge will continue to be passed along. Maybe it’s photography? Take photos of everyone you know that has epilepsy. This will show you just how strong these epilepsy warriors are. Create something purple. Get people to ask questions. Create a poster for an epilepsy awareness event. I don’t have a definitive plan yet, but I will.

Spread knowledge, spread love. All you need is a little creativity. ❤

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Seizure Response Dog?! & Make-a-wish

I’m at the inquiry stage of seeing if a seizure response dog would be beneficial for Colleen. Over the years, we’ve bought both the Embrace watch and Sami cam to help make sure Colleen is safe.

But, now that she is walking more and more at school at home, it’s still scary to think that at any moment, she could have a seizure or myoclonic jerk. That moment came last week when she had a myoclonic jerk right into her toy. With her face. Ugh..she was brought to urgent care since it looked like she might possible need stitches. Thankfully, the swelling went down and no stitches required. She was still left with a nasty black eye.

Thank goodness for frankincense essential oil! Waiting to hear back if a seizure response dog would be an option. I sincerely hope so, but it means we have to minimally fund $10,000 ourselves. I think we can do it! Also want to get her in for a second stem cell treatment!

In other news, Colleen was nominated for Make-a-wish! It’s still at the beginning stages for that as well, but I’m so excited to her. She decided that meeting Anna and Elsa at Disney would be her wish. I’ll keep you up to date when that will be happening!

Til next time,

Xoxo Jen

The epilepsy monster

It was almost like the epilepsy switch was turned off. Colleen had so much energy, her teachers started asking what we had started doing different. She was vocalizing, almost in a way she was expressing her opinion. And she had some much curiosity.

I’m realizing now that perhaps it was a growth spurt. This morning, I had to hold Colleen as she had myoclonic jerk after jerk. My heart aches for her in moments like these, as I hold her, exhausted in the aftermath. I had really started to hope that the stem cells and her growth were putting an end to the epilepsy monster.

But not yet. I keep fighting and I know to do that, I will have to do everything in my power. We have a donation towards her next stem cell treatment, so working towards saving enough for the next treatment. After much thinking, I started researching what she would need for a seizure alert dog. With how unpredictable the seizure activity is, I know this would be another way to make sure she’s kept as safe as possible.

When you can’t communicate with your child..

More and more lately, I’ve been trying to search for ways Colleen would be able to communicate with is. This is the one area I feel that we are strongly lacking.

Colleen very briefly would use a couple of signs, like “more,” but there hasn’t been consistent use in a long time. I’ve asked about options with her School, as I know they use a program called TouchChat, but I think Colleen was having a hard time using a single finger to press the iPad button. And with that, she was still limited to two choices.

And I’m left wondering what Colleen could be capable of. As her mother, I feel that most of the time, I can accommodate her needs before she gets too upset. Like being hungry or being ready for bed. But lately, it’s been more of a challenge.

For the last week, it’s like a switch got flipped. She has more energy, she’s wants to explore, play, and vocalize. She knows what she wants, and best get out of her way! (Because if I pick her up, she very vocally protests!) But, she also has wants that make me have to guess. The other night, she slept for about an hour before she woke up upset. This hasn’t happened in forever. So I’m wondering if it’s upset stomach?! What could it be? She was starving…it was like she hadn’t eaten dinner. It’s just instances like this that are making me start to really want a way for her to communicate.

At this point, I’m thinking I should start with her School again. I’ve seen other children using eye gaze communication and I’m wondering if something like that would work.

Do you have a non-verbal child with similar abilities and challenge areas?! I’d love to hear what you came up with for a solution!

Determination

This past weekend, there was a fierce determination in Colleen. She kept trying to stand, no matter how many times she lost her balance. I was happy because it had been quite a while since she was consistently doing that. I know I mentioned before, but with a lot of Colleen’s progress, I see a little glimpse of it before it disappears again for a while.

Well, Colleen had something different planned this week. I found out from her teachers that she’s been consistently taking 10-15 steps by herself. By herself, no walker. Today, I am full of happy tears knowing that I can say I seen my baby walk! Look out, world!

3 Weeks post stem cells & the ARC of Onondaga Race

I can’t believe how talkative Colleen is. She’s constantly babbling, and it’s so amazing to hear all the different sounds she’s making.

Just the other day, I laid Colleen down for a nap. She threw her toy out, and in order to get it, she went to the opening and was trying to carefully get herself down with one arm extended to the floor. Why is this a big deal? Colleen has the safety sleeper because she just didn’t understand that she could fall out of her bed and hurt herself, so to see her processing the situation and not just going after it is remarkable.

Another thing? You know all those posts of the past where I was desperately trying to get Colleen’s stomach issues figured out? She was in constant pain from chronic constipation, and that was even after daily doses of miralax and senna. I was sick of giving her this stuff. Now, almost a month post stem cells, she has had 0 issues. How do you put to words the amount of relief that is?

This was after 1 treatment, and we will definitely be going back for more. We have not received her EEG results yet, so I will be bugging them again on Monday.

That brings me to the ARC race. The amount of support these past few months have been truly amazing. Every year, the ARC of Onondaga has their Dunkin Run Arc Race 5k and half marathon. The ARC serves the central New York area, providing services to people with developmental disabilities. They also pair runners from the communities with athlete with disabilities and they can run tandem. My friend, (and manager and amazing design mentor) Karanya, wanted to do this for Colleen.

I would have run, but I’m definitely no where near ready to run a half. (Maybe next year?!) Her and her friend, Rosemary, pushed Colleen tandem for the half. I think Colleen enjoyed herself and I was told she even came some motivational yells! 🙂

Before the race, when we first arrived, a little girl ran up to Colleen. She takes Colleen’s bus, and I was happy to learn that her brother was Hugo! Last year, we had a cerebral palsy awareness day at school because of the efforts of Hugo’s parents. It was great to meet them.

So here’s to next year. Feeling inspired by the running community and I’d love to tandem run further than a 5k. Better start practicing now!