¡Say Hola Lola!

Two souls, in love, guiding our daughter with West Syndrome down a path of health and hope. var _gaq = _gaq || []; _gaq.push(['_setAccount', 'UA-16619176-1']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); All original content copyright ¡Say Hola Lola!, 2013 - 2014

[sayholalola]

I'm home with the windows wide open and I hear squeals of joy coming from Lola as she is down at Amy's. She had a seizure at 5:10 am and while it hurts to know she had a seizure, we got what we needed. Our plan was to unhook her today regardless so I'm thankful it showed up when it did. We'll have answers in about a week. Being in a hospital for children gives you great perspective. We were lucky to be able to leave in the condition she was in. Many don't have that same opportunity. I was reminded it doesn't take away from the fact that this week was hard on our daughter and our entire family, but she's healthy and now she's happy because she's around her brother and friends. We are grateful for all of the love and support. Now I'm off to the pool to rejuvenate a bit. 😎☀️🏊🏻💜 #kid #daughter #nr2f1 #seizures #epilepsy #rileyhospitalforchildren #motherhood #family #support #bbsoas #happy

[sayholalola]

Don't worry, sweet Lola. One more night and you'll be free. If your seizure monster doesn't show its face tonight then mom is busting you out of here. #epilepsy #seizures #eeg #nr2f1 #bbsoas #🖕🏻day5 #kid #rileyhospitalforchildren

[sayholalola]

How is it even possible we have had to make it to day three? My mother's instinct was wrong as I truly believed a seizure would show up last night. It didn't. Lola appeared defeated today. She was exhausted. Her spirit is deflated. She just doesn't understand. She's been such a good kid, but she knows this is it for right now. This is her life and it just sucks. With all of the brilliant people in the world and all of the technology, how has no one created a less barbaric system to detect seizures? 👎🏻 #rileyhospitalforchildren #epilepsy #seizures #bbsoas #nr2f1 #daughter #kid #neurology

[sayholalola]

Thanks to Janice from Access, I'm indulging in lunch outside with the sun beaming on me. It brings me great comfort to know Lola is being well-cared for while I recharge even if for just a short time. I only wish Lola was out here too. Soon enough. 🌞🙌🏼😎 #accessbehavioranalysis #caregiver #mother #rileyhospitalforchildren #sunshine

[sayholalola]

Day two is winding down and our little trooper had a pretty darn good day considering everything about this experience sucks for her. The fact that I'm posting about day two indicates that no seizures have been captured. But hopefully the obscene amount of MSG I let her consume (MSG is thought to lower her seizure threshold), the fact that she is beyond sleep-deprived, and that her ABA therapist, Kristen, was here all day challenging her exhausted brain...well it sounds like a perfect cocktail for a seizure to me. Fingers and toes crossed! I am SO thankful Access Behavior Solutions is providing ABA therapy all week. Having Kristen here to make Lola smile, help her continue to learn, give me an occasional break, and teach me more about ABA -- well she was just incredibly helpful. 😊 #seizures #epilepsy #bbsoas #rileyhospitalforchildren #eeg #aba #accessbehavioranalysis

[sayholalola]

Lola's Empatica Embrace seizure detection device came yesterday after almost two years of waiting. Ironically, she's being admitted to the hospital on Monday for a five day video EEG to hopefully detect a seizure once and for all. Between the vEEG and the Embrace, we should get some answers as to what is going on with our girl. With Embrace, we are part of the Beta program so we will report on effectiveness, design, functionality and much more. We'll make sure to share our findings as I know many followers are interested in knowing how this device works. Please keep Lola in your thoughts and prayers next week. 💜 #seizures #epilepsy #embrace #empatica #nr2f1 #eeg #daughter

[sayholalola]

What a year it's been, but this child has never stopped progressing, loving, learning and smiling. We are so grateful for Mrs. Tubbs and the entire staff at the Indiana School for the Blind and Visually Impaired for their dedication to the development and well-being of our daughter. And many thanks to Access Behavioral Analysis (and especially you, Kristen!) for providing one-on-one ABA assistance. Happy Summer! 🌞🏊🏻🌅🏖😎 #isbvi #nr2f1 #summer #kid #specialneeds #accessbehavioranalysis #aba

[sayholalola]

"My daughter, Lola, has disabilities that affect most every aspect of her life, but she's our shining star and her light has always guided the path. She's begun to use words and some are quite easy to understand as well as purposeful, but others can only be understood by those of us who know her. When she really, really wants something, she says, "Quease!" To me, quease, sums up our life. Lola's path may be different, but there is meaning behind it and there's a purpose." @myintent #myintent #whatsyourword #QUEASE #daughter #nr2f1 #disability #purpose

[sayholalola]

So thankful to celebrate being their Mom! Motherhood comes with many highs and lows, but seeing their smile each and every day reminds me of the gift they've given me. I'm counting down the days until my own mama will be living here and I'm thankful to have married a man who came with two women who both treat me as their own daughter. But all women take on some sort of mothering role may it be to a child, a pet, a sibling, their own parent or a friend, so I think Mother's Day should be a celebration of ALL women! 💛 #mothersday #mom #celebration #women

[sayholalola]

This cutie got a haircut today and she did SO good! Anyone who has followed Lola's journey knows that haircuts are not typically easy. But today, I utilized a lot of what we've been learning through ABA, the salon was empty, it was quiet (no TVs or music), and the stylist had a very calm demeanor. Last time Lola went, I was holding back tears because I didn't know how to make the experience better for her. This time, I held back tears because I was just so darn proud of her! She sure is a beauty! 💇🏻😅👧🏻💜 #proud #aba #nr2f1 #sensory #specialneeds #saturday #hair #kids

[sayholalola]

Sensory SnoWonder on this lazy and chilly Saturday. She has a love/hate relationship with it. She isn't sure if she likes the feeling, but she can't keep her hands out of the bowl. 🌨🤔❄️ #nr2f1 #sensory #specialneeds #snowonder #saturday

[sayholalola]

We are so happy to share that Lola WON a #riftontricycle through the drawing of the Great Bike Giveaway!! We can't express our gratitude enough for all of your votes, shares, donations and encouragement! This means a great deal to our family and we are just so happy for our little girl! Thank you, thank you!! #greatbikegiveaway #specialneeds #nr2f1 #happiness

[sayholalola]

I managed to sneak a smile out of her. Tomorrow will be better. 💜 #purple4lola #epilepsy #seizures #purpleday #nr2f1

[sayholalola]

Sebastian is wearing his #purple4lola! #epilepsy #seizures #purpleday #siblings

[sayholalola]

Fellow Say Hola Lola Friends -- I'm in need of a favor for Lola. It will take seconds and it will cost you nothing, I promise. Lola has an extremely rare genetic condition (35 diagnosed in the world) that has caused her to face many challenges in her life (intractable epilepsy, severe vision loss, delays), but she is a happy soul. One of her favorite things to do is ride a bike yet she can't do so without assistance on a traditional bike. But she IS able to ride and pedal an adaptive bike. Unfortunately they are ridiculously expensive which is why we've entered Lola in a national bike giveaway. Please take a few seconds and vote for Lola to win an adaptive bike. The link is in my bio. And if you are so inclined, you can share the link from Lola's page! Please share as much as you can on social media, large groups you are a part of, tweet celebrities if you are on Twitter, anything will help. I would not ask if this wasn't important, but it could greatly enhance her quality of life. Not only will she be able to ride a bike with her neighborhood friends, but she will gain strength, coordination, and other gross motor skills. Please help win a #bike4lola! With gratitude, Meredith 💜 #specialneeds #bike #adaptivebike #help #gratitude #happiness #child #lola

[sayholalola]

My muse got to check out reVISION today. Her hands were all over the art and the best part is...that's OK! #art #accessibility #visuallyimpaired #reVISION #inspiration

[sayholalola]

After having Lola in our lives for three years, I had a hard time fathoming how I could possibly love another child as much as I loved her. Yet the moment Sebastian was born, I felt the immense amount of love for him the moment I laid eyes on him, just as I had felt it for Lola. Sebastian is two years old today and what a joyful little human being he has grown into. He is wise beyond his years, but he needed to be so he could help his sister. He has the most active imagination that can make even a grown woman get lost in his little world. He saves us from zombies, ghosts, witches and bears every single day. I have never felt more safe in my life. 😉 His laughter can brighten the worst of days yet he can be the most stubborn child on the planet. He takes great pleasure in making us proud especially his father. He has the most genuine soul and warm demeanor...I see traces of my father in him often. We couldn't be more pleased with the kid he's become and we look forward to seeing what this next year brings for our little guy. Happy Birthday, Sebastian! Don't forget, you are TWO buddy not three! 🎂🎉🎈😊💙