Wednesday, May 3, 2023

Emily of @team_orosco Signature Style - Epilepsy Awareness

We're so delighted to be able to collaborate with Emily of @team_orosco to share her Signature Style with you and promote epilepsy awareness.  Please read all the way to the end, and then do what you can to support this wonderful cause.  (Don't be shy, it involves sewing!!!)  Here's Emily:

Hey there, it’s Emily with @team_orosco! Today I feel so grateful and honored to be able to spread epilepsy awareness, and share with you a glimpse of our journey with our sweet middle girl Lucia! (Wearing here @Boo and Lu Pumpkin with an added ruffle) and a self drafted mesh skirt. The purple jersey is @Ph detour orchid Jersey which was perfectly on theme!

Epilepsy Awareness

First you may be wondering, what is epilepsy? Epilepsy is a disorder in which nerve cell activity in the brain is disturbed, causing seizures. There are many different seizure types- Lucia has what are called Focal seizures. Focal seizures occur when nerve cells in a part of the brain are involved. The way the child acts during a focal seizure depends on the area of the brain that is affected- Lucia smacks her mouth, has almost a fearful or concerned look and often jerks one side of her body. Her seizures were several times per day as a baby and now she has mostly nocturnal seizures. When it’s over, there is a state of confusion and she is usually cranky and tired. 

Emily of Team Orosco

 Lucia was our second of 4 kids. I noticed something was different when she was about 4-6 months old. She would have long periods where her eyes would look big, she would would smack her mouth and have stiff limbs.  I took her to our pediatrician with a video and she referred us to neurology immediately. That’s when we got our first EEG. An electroencephalogram (EEG) is a medical test used to measure the electrical activity of the brain. A number of electrodes are applied to your scalp. EEG can help diagnose a number of conditions including epilepsy, sleep disorders and brain tumors! Shortly after being referred to neurology we noticed that she way delayed physically and cognitively as well. She was in OT for several months and began to walk when she was 2! She has low muscle tone so her joints are bendy. This causes her to tire easier than our other kiddos. 

We now have routine EEGS. Lucia (lulu) has one older sister, a younger sister, and younger brother. They are her biggest supporters, and best friends!

Lucia is now in Kindergarten! She is just like any other 6 year old. She loves art, science, and anything outdoors! She has a fun sense of humor, and loves her siblings SO much! 

In addition to epilepsy, Lulu also has sleep disorders. She has periodic limb movement disorder,  and parasomnia which is common in children with epilepsy. She very rarely has a full night's rest. Every day we pray for a cure for our sweet Lucia Jolie, and all of the other epilepsy warriors out there. Her oldest Sister, Sofia sleeps with this special prayer rock that she made for her sister every night. 

Lucia is so loved by our family, epilepsy is just a piece of who she is! If you want to learn about Epilepsy please read here Info about Epilepsy

The reason that it means so much for us to spread awareness is because there is no cure for epilepsy. Donating to the Epilepsy foundation can help save lives and get us one step closer to finding  a cure. 💜💜 thank you for reading, and showing your support this week!

Project Run & Play

I hope you liked our final look for PRP, and if you’d like to help us this week in spreading epilepsy awareness sew something purple and use the hashtags #prpgoespurple and #epilepsyawareness 

Thank you so much!



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