Lola and Epilepsy

Lola and Epilepsy

  • Well, That’s Surprising News

    July 1, 2016

    It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her

  • Here’s Why I Hate You, Seizures

    March 21, 2016

    I feel your presence. I know when you are lurking in the background. You are waiting for your opportunity. You wait until a moment when her body is vulnerable, when she is tired, when she is ready to let the world fall at the wayside as she drifts off to sleep. You have her all figured out and yet we know little about you. Except we know when you are coming. Your aura shows itself in two obvious ways. Some days you seem like you are trying so hard to breakthrough that she is literally coming unglued by the tiniest hint of your existence. She is hard to calm. She screams. She hits herself out of frustration. Her behaviors make her father and me prepare. We are extra

  • Come Stroll Down Memory Lane – A Birthday Post

    January 30, 2016

    Warning! Plethora of pictures! I’m almost a month late with the Lola birthday post, but that seems to be the story of my life lately. Lola turned five-years-old on January 4th and I’m still pinching myself with disbelief! I’ve had so many emotions with this birthday and I can’t seem to figure out why. There’s something about five that says she’s well on her way to school dances, shaving her legs, screaming “I hate you” and everything else teenage-related. All right so I’m getting a bit ahead of myself, but she’s getting bigger which scares the hell out of me yet makes me look forward to all of the good stuff that’s just right around the corner. Five years ago, I was afraid for her future. I didn’t

  • Holiday Happiness

    December 30, 2015

    Creating a memorable Christmas takes a lot of work. With each Christmas that comes and goes, it seems even more work goes into making the holiday magical, but in all honesty, I love each and every minute of it. With each passing Christmas comes new memories created with traditions that Rob and I are putting into place. As I sit here looking through pictures from the last month, I’m reminded just how special we try to make it for our children. And part of me can’t help but wonder if we aren’t making it special for ourselves as well. Perhaps we are trying to re-create a feeling we miss from our own childhoods. I’ll probably say it year after year, but this Christmas was my favorite thus far

  • Thanksgiving Perspective

    November 26, 2015

    I think being a mom of a child with exceptional needs has given me a unique perspective on being thankful. While I’m thankful for all of my blessings on this Thanksgiving, I find that I’m equally as thankful each and every day of the year. It’s nice to have an entire day to ponder the meaning behind gratitude and how it weaves itself into my daily existence because I am indeed very grateful. But as a mother, a wife and, more importantly, a woman, I try to honor the things I’m thankful for all year round…and these two are at the top of that list. Lola has taught me to appreciate in a different way and embrace all that life has to offer. Because I surround myself with

  • Halloween Can Be ‘Tricky’

    November 8, 2015

    What a bizarre holiday you are, Halloween. 364 days a year we teach our children not to talk to strangers, not to go up to stranger’s homes and never to take candy from a stranger. Yet on this one day a year, all rules are obsolete. Instead we say, “Hey kids! Go ahead and talk to strangers. Go right up to their homes. And why yes, by all means, eat their candy!” For young children and especially children with special needs — it can be quite confusing. Last year the weather was dreadful in Indianapolis. It was sleeting, it was cold and there was no way I was going to make my then 3-year-old and 10 month old endure Trick-or-Treating. This year I really wanted both Lola and

  • Quease Fall, Don’t Go

    October 31, 2015

    “Outside, outside,” says Lola. It’s her new favorite word. It literally emerged from her vocabulary just this week. Up until a few days ago she’d say “bike” which ultimately meant she wanted to go outside. We’ve gotten really good at deciphering meanings behind her words. We used to have to pick up on her communication cues through all other avenues except for language, but she’s starting to use words more predominantly than actions. It’s been nothing short of astounding to witness. She has many more words in her back pocket that seem to appear out of nowhere. Some of them have quite complex meanings behind them and she’s starting to understand that they can be used in multiple scenarios. For example the word “off” — she uses it

  • Right Where She’s Supposed To Be

    September 15, 2015

    It’s been over three weeks since Lola started school and based on the lack of posts on this blog — well let that be an indication as to how busy our family is these days. We purposefully chose not to talk about school at length over the summer as Lola doesn’t quite grasp the concept of taking a summer break. But a couple of weeks before school was scheduled to begin we started to repeat trigger words like bus, school, Mrs. Tubbs, Melissa and backpack. We wanted to help refresh Lola’s memory of school and you could see the wheels turning in her head as we began to use the words more frequently. Back to school haircuts and milkshakes Since Lola goes to the Indiana

  • Saying Goodbye to Summer

    August 17, 2015

    Truth: I have 1020 photos and 52 videos saved on my iPhone. I have photos dating back to the day Sebastian was born, the day he stood up on his own, the day he took his first steps, and everything in between. Most of the videos are of Lola and her quest to walk independently. Each one brings me right back to the moment and I can feel the pride in my voice over and over again. I have all of the photos and videos saved on our computer and countless other places because I have this incessant fear of losing them. And even though I know I could easily find them all, I still save them on my phone. I can’t explain why because I’m not quite

  • Fitting in at CampAbility

    August 3, 2015

    Dear Easter Seals CampAbility Staff, From the moment we walked in the classroom, I knew our daughter would be in good hands. Before I could even muster up a “hello”, several of you introduced yourselves and acknowledged Lola. I tried to think of how you would know who she was because you had never met her, but the intake process for attending camp was so extensive that I’m sure you saw her picture. You probably knew her likes, her dislikes, her food preferences, and even her rare genetic condition, NR2F1, along with all its symptoms. I would guess that you knew she had limited speech, a complex visual impairment as well as epilepsy. I’m sure you were educated and prepared to give her the rescue medication if, God

  • To The Hairdresser Who Changed How People Saw My Child With Special Needs

    July 11, 2015

    Dear Hairdresser Who Sang To My Kid, I should know your name. I can’t believe I don’t. I was so busy trying to corral my two children, pay for their haircuts and maintain my sanity. I remembered to profusely thank you and I could have very well asked your name. In fact, I’m sure I did, but that important detail has faded. Unfortunately what I do remember is that people were staring at us prior to you calling my daughter, Lola, back. I remember my face feeling flush. I remember thinking the outing was a bad idea when Lola began to run in places she wasn’t supposed to, grabbed at things she shouldn’t have, and I remember the piercing scream she belted out when I tried to redirect

  • ‘Progressing’

    June 16, 2015

    Try to do a blog post today. Most days I think it, but I rarely follow through. It’s not because I’m not dedicated to Say Hola Lola, it’s just that my free moments are few and far between these days. Anyone with young children knows this to be true. For those that would like continuous Lola updates, I’d recommend following Say Hola Lola on Facebook or on Instagram.

    t’s hard to believe Lola has completed her first full year of school (she started halfway through last year). On her final day of school, I sobbed like a baby throughout the entire day. I couldn’t articulate into words where the tears were coming from, I just knew I was proud. I watched the video of

  • Is Our Marriage Different Because We Have a Child With Special Needs?

    May 9, 2015

    I’ve read blog posts about how the dynamics of a marriage change when you have a special needs child and it made me wonder: Is the marriage between Rob and me any different because we have a child with special needs? As you can see from the bio on my website, Rob and I fell in love fast. As he wrote, “It was quick. It was breathless.” And that’s the absolute truth. We knew we were committed to one another before we even knew each other’s quirks, habits or deep dark secrets. People often told us we would have beautiful babies and in my heart, I believed that to be true. And they were right–we brought two spectacular human beings into this world. Our daughter, Lola, who happens

  • “Mamma Said There’ll Be Days Like This”

    April 17, 2015

    Do you ever get the most obscure song stuck in your head and you’re not sure where it came from, why it’s there or when it will go away? Thanks to the podcast, Radiolab, I learned these songs are called earworms. A couple of weeks ago, Lola had a two day video EEG (VEEG) at Riley Hospital for Children. And the days leading up to the VEEG, I had the song, “Mamma Said There’ll Be Days Like This”, stuck in my head and on repeat. It lingered all day, every day. As I prepared breakfast for the kids, as I got ready for work, when I was at work, when I was driving, when I came home…you get the point. It was strange and annoying. I was frustrated

  • Epilepsy Awareness #purpleforlola

    March 29, 2015

    On March 26th, we participated in an epilepsy awareness effort called Purple Day. Purple Day began in 2008 when a girl named Cassidy Megan had an idea to wear purple in an effort to raise awareness about epilepsy. Megan had struggled with epilepsy herself which is why she wanted to educate people about epilepsy, she hoped to debunk epilepsy myths and she simply wanted to start a conversation about epilepsy. It started out as a grassroots movement, but quickly turned into an international day of epilepsy recognition. Since epilepsy affects Lola’s life, we wanted to participate and we were blown away by the overwhelming amount of support we received! Friends, family and strangers from all over the country (and in Costa Rica!) wore their purple to help spread

  • Happy Birthday Lola!

    January 4, 2015

    Image Credit Dear Lola, Today, my darling sweet girl, you are four years old. Four years ago, you came into this world with your own agenda — to make it a better place. And you’ve done just that. You inspire strangers and impress everyone who knows you. You have been handed challenges, but the way you gracefully navigate through them without fuss make your challenges seem unimportant. You are a fighter. Your ability to persevere even when life knocks you down is a trait you developed on your own. I wish I could take credit for this, but lord knows Mommy isn’t as strong as you baby girl. But you make me stronger each and every day. You help me realize spontaneity is an unappreciated characteristic of life.

  • NR2F1

    December 24, 2014

    NR2F1. This combination of five letters and numbers meant absolutely nothing to me until a few weeks ago. Now those five letters and numbers have given us the answer to, “Why Lola?” They are the sole reason why the course of Lola’s life changed so drastically. They are the letters and numbers making up a long awaited diagnosis. When I first received the call from neurology informing me a diagnosis had been found, I was elated. I quickly called Rob, my mom, sent out texts, posted on Facebook and Instagram. I was ecstatic. We finally knew what exactly we were up against. The main symptoms were optic atrophy (Lola has CVI and small optic nerves) and intellectual disability (she is globally delayed). We would have to keep an

  • If You Have a Child, Please Watch These Videos

    November 19, 2014

    Today I’m sitting here on the couch with Lola sprawled out across me. She’s home sick for the second day in a row due to the annual ‘flumageddon’ virus. She gets it every year and this year is clearly no different. While I’m sad she isn’t feeling good, I’m elated with one important aspect of her illness — she hasn’t had any seizures. For most epilepsy sufferers there are underlying causes that can trigger seizures. For Lola they are generally illness (fever or not), physical or cognitive developmental leaps, overexcitement, weight gain, and excessive tiredness. Yesterday marked one week since Lola has had a seizure. While I celebrate this one week seizure free milestone, I am especially hopeful the medicine increase is working because little lady is pretty

  • And Just Like That

    November 9, 2014

    Its been two days since I posted about Lola’s one month seizure free milestone and as I said before, you just never know when a seizure will emerge. This morning just happened to be that day. Something seemed off about Lola this morning. She was unusually cranky, her vision was erratic (running into tables, large chairs, etc), she was extra mean to her brother and she was moaning/crying non-stop. This is a day when communication with words would have been stellar. We had no idea what was wrong. I hear parents complain that their kid talks too much and I want to punch them in the face. Too harsh? But seriously, I would have given anything for my daughter to have been able to articulate her frustrations this

  • Where We’re at Today With Epilepsy

    November 7, 2014

    November is National Epilepsy Awareness Month and for as much as epilepsy has impacted our family, you’d think I could easily write about it. Yet I’m sitting here with a blank screen. I wouldn’t really call it writer’s block since I only show up on this blog every now and then. I think it’s because I try so hard to go on as if epilepsy isn’t part of our life. Like if I don’t acknowledge its presence that maybe it will simply go away. But that’s not fair to Lola and it’s not fair to the readers of this blog. So lets talk about epilepsy and what it means to my family. (Image courtesy of Natalie McLaurin) Today Lola is one month seizure free.

  • I Lied About Being Able to Relax

    October 6, 2014

    “What do you do to relax and how do you know once you’ve achieved relaxation?” Simple question, right? I was sitting in a circle with maybe a dozen other people. All of us parents of children who have vision impairments among other ‘different-abilities’. For once, I didn’t feel vulnerable sharing pieces of me that I tend to tuck away until the time is right. We were all together for the annual Visually Impaired Preschool Services (VIPS) Family Retreat in Louisville, Kentucky. Lola was over at the Respite Camp and I was excited to be working at the Retreat as a VIPS employee. And while I am indeed an employee, I still and will always be a VIPS mom. Just as the other parents and caregivers in attendance, I’m

  • Oh Life, Please Settle Down

    September 9, 2014

    Well, I started this post last week and then every kid disease and ailment took over my house. Lola was sick and it turned out it was Hand, Foot, Mouth Disease. I think Rob and I had it last weekend and of course Sebastian got it too. Aggghhh!! I didn’t even know what the heck HFMD was until I learned about the epidemic it has become in Indiana this year. Plus Sebastian is teething. And then throw Lola’s epilepsy on top of all of it. Well, it’s been just an epic couple of weeks in the Howell house. I should be doing nice things for myself in this downtime, but I think I’ll go and disinfect my house, my mind and my soul from all of this crap

  • Today’s Silence Comes With an Unfair Price

    August 8, 2014

    Something strange and wonderful is happening in my house right now. I’m sitting here sipping my coffee while trying to organize all of the thoughts in my head. I hear the whisper of the fan, I hear the rhythmic pattern of the washer and I can even hear the rumbling of my stomach telling me to go eat breakfast. What is missing this morning is the usual chaotic noise that is generally found in my home. There are no kids laughing or crying, the dogs aren’t barking because they are being attacked by Lola or Sebastian (OK – mostly Lola) and the TV isn’t displaying its normal morning show — Curious George. Instead I’m sitting here alone and in silence. I should say that I’m missing all of

  • What Life Means Today

    July 5, 2014

    Some years ago, this blog began as a way to stay connected with family and friends while Rob and I embraced our new life in Costa Rica — it was actually called Live Love Travel Souls. I then became pregnant with Lola so I thought I’d blog about the healthcare system in Costa Rica and raising a baby in a foreign country. And then over a course of time, life changed drastically when Lola was diagnosed with infantile spasms (a rare form of epilepsy), cortical visual impairment and global developmental delays. The blog morphed into Say Hola Lola. When Lola began to have seizures, countless medical appointments, endless diagnostic testing, a daily regime of medication and therapies to help her get strong both physically and mentally, I scoured

  • Hi – We’re Here

    April 23, 2014

    I realize it has been a few weeks since my last blog post and my only explanation to that is I have a young infant who loves his mama and a little girl who has found a freedom like she never knew. I see these blogging mothers who raise families, some work, in pictures their houses look clean and tidy and yet they still find time to create these amazing blogs. I can’t quite figure out how they do it all. I thought I would have plenty of time to dedicate to this blog after I had Sebastian. Lola would be in school, Sebastian would be an infant and I would spend parts of my day listening to music and writing my little heart out. I find that

  • In Case You Missed the Big News…

    March 7, 2014

    I had planned to write this elaborate post about how amazing Lola is doing with her walking, but I have a little baby boy (two months today!) who is wanting to be near his mama. And today I’m choosing to embrace his need to be close because time is indeed flying by. I don’t want to be that mom who wishes she had put down the technology in order to be more present in her life. I want to be an active part of it. So I’ll simply let you see for yourself how well Lola is walking… I literally watch these videos several times a day. I’m so proud of our daughter and all of the hard work she has put in to achieve this incredible milestone.

  • A Long Lola Update

    February 20, 2014

    t has been just over a month since Lola began attending the Indiana School for the Blind and Visually Impaired (ISBVI) and we couldn’t be more thrilled with the progress we are seeing in our little girl. Prior to attending ISBVI, Lola had been in a three day a week, couple hour a day program. While she was learning in that type of environment, we could tell she was craving more stimulation which is why we chose ISBVI. Lola attends the school five days a week for the entire day alongside four other kiddos in her class. She is in a play-based classroom yet there is also structured learning. They focus on Lola’s abilities not her disabilities which means the classroom setting is challenging but not overwhelming for

  • An IEP Success Story

    December 27, 2013

    hen you have a child with special needs, you are aware and ultimately prepared about the early childhood education intake process. First the public schools are notified when a child in their district is almost three years old and that child has some type of delay (physically, cognitively, speech, language, etc). Mandated by the Individuals with Disabilities Education Act (IDEA), the child must be evaluated by the public school system in an effort to put that child in the most appropriate school setting as well as offered in-school therapeutic services – if a child qualifies – under what is called an Individualized Education Program (IEP). The IEP is specifically designed for the child by a team of professionals at the school. It not only ensures the child has

  • Our Newly Designed Site – Thanks Babe!

    December 21, 2013

    As Lola grows, so will our site! Let me start by saying thank you to my amazingly talented husband who redesigned the Say Hola Lola website.  I know it may take some time to get used to the look, the function and the overall layout (believe me…I am not the best at embracing change either), but Say Hola Lola has needed a makeover for many months if not years now.  We decided to go with purple as the primary color for the site as it represents epilepsy (it is also the color behind an organization we love and support called VIPS).  While we will continue to leave resources and past blog posts about West Syndrome/Infantile Spasms on the site, we will no longer tag posts with it as

  • You Don’t Get to ‘Ding’ My Kid

    December 14, 2013

    Please bear with me folks. I just need to get this off of my chest. Not only for my sake, but for parents/grandparents/caregivers to realize that certain actions, verbiage and projections by others (even if they are so-called professionals) are simply unacceptable. Period. Last week Lola had her evaluation by the public school system. This evaluation was for therapists, teachers and other special education professionals to be able to determine what services/goals are appropriate for Lola as she enters preschool when she turns three years old. Now this evaluation took place on a Thursday, Lola was just getting over being incredibly sick so I knew the evaluation would be skewed because she just wasn’t feeling well. Unfortunately, with the public school’s Winter Break coming up and Lola’s third

  • Alternative Therapies

    December 3, 2013

    ** I have been trying to post this for a week now but the entire household had/has fallen ill with as my husband puts it “ravaging toddler flu”. Last week I had just about had it with therapies for Lola. She had everything from her traditional physical, speech and occupational therapy, but then she also had hippotherapy and patterning therapy. I’m also enrolled in a speech savvy program offered by Lola’s First Steps provider. We are busy people. And I mean real busy. But in truth, I have no one to blame this on other than myself — and I’m OK with that. Ever since Lola began having seizures two years ago, she has been enrolled in some type of therapy (yes…even in Costa Rica). Rob and I

  • A Halt, But We’re Moving Forward

    November 13, 2013

    Last Tuesday Lola had her 24 hour video EEG at Riley Hospital for Children. You may remember, Lola had one last year as well so unfortunately we were no strangers to this long procedure. The hope in monitoring Lola’s brain activity was to help give us the reassurance we needed to start a wean off of her anti-seizure medication, Trileptal. Yet sadly, we did not get the news we had hoped for this time around. Last year, Lola was having abnormal spikes in her brain which we were told could potentially lead to seizures. Per the suggestion of her neurologist, Dr. Zimmer, we decided to keep her on the Trileptal for another year just to be safe. Her body was doing a slow wean anyways due to her

  • And Of Course, a Lola Update

    August 18, 2013

    Lola has been one busy little girl which means that makes us busy by default. I’ve said it before and I’ll say it again, to us Lola is just Lola. Sure we know she has challenges and quirks, crazy schedules and many appointments, medicines and much much more but that is the life of our little girl. It’s the only life with a child that we know. When I don’t post about Lola, it’s simply because Lola is just busy being a typical toddler. She’s sassy and hornery. She is on a food strike where all she wants is peanut butter sandwiches and crunchy snacks. She throws fits because she can’t voice what she wants which has led us to believe that “the terrible twos” really do exist.

  • Big Sisters Have to be Big Girls

    July 24, 2013

    Last night Rob and I began to have the discussion about where new baby’s room will be. Will she (no…not the sex, just using it for writing purposes) take Lola’s room, will she use Lola’s crib, will we keep the same theme and the list goes on. Of course that conversation led to heavy thinking on my part like will I love this baby as much as Lola, will Lola feel left out, will they love each other, are we really responsible enough to care for another tiny being and my mind continued to go in crazy directions (hey I’m a woman a wildly emotional pregnant woman). After much discussion and after many reassurances the bottom line was this…it’s time to let Lola grow up. You know, everyone

  • Celebrating Me is Celebrating Being Lola’s Mom

    May 15, 2013

    For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day. The old post office that Irvington is trying to save. Who knew snot could look so cute? The tiny streets were lined up with artists, local

  • Just One of Those Days

    April 11, 2013

    Yesterday as I was sobbing to my mother about how much it pisses me off that Lola has to work so hard to achieve her milestones and how I was beginning to feel helpless as her mother, she stopped me and said “maybe you should write about it”. And as I sit here ready to put my most vulnerable feelings out on the internet, I think of my husband gently telling me to be cautious about using the blog as my diary. But today, I’m choosing to write not only to free myself of some pretty bad feelings, but also so others can see that you’re not a horrible parent to thrive for an easier life for your special needs child. Most days I am strong, positive and

  • A Quick Update

    March 20, 2013

    My oh my…where to begin? So much has happened during my absence…so many good things to share. In that short time, we have sold our beloved home in Butler-Tarkington, we bought a new house in the Irvington area (a really cool, urban, community-driven neighborhood), we moved (I’m so proud of my husband for moving us himself) and we have been enjoying each and every moment in making this new place our home. I will post pictures soon and will share all of the joys of this new place, but for now I wanted to tell you about the little girl that you all come back here to read about…our Lola. How is Lola? If just one word could describe her, it would be: awesome. Last night as Rob

  • Trying New “Methods”

    February 13, 2013

    It is interesting how life has a way of laying out a path for you especially when you are seeking a road less travelled. It was last June when I stumbled into the “Special Needs” section at Barnes & Noble…a store I rarely visit, but just happened to tag along into that particular day. I perused several titles and one title in particular stood out to me: Kids Beyond Limits– Breakthrough results for children with by autism, Aspberger’s, brain damage, ADHD, and undiagnosed developmental delay by Anat Baniel. I flipped through several pages and knew instantly it was a book worth purchasing. I loved that the focus of the Method was to work with a child’s abilities rather than sequestering them based on their dis-abilities. At that point

  • The Neurogeneticist

    January 30, 2013

    “Amazing!” “Fantastic!” “Lucky!” These were among the promising words the neurogeneticist said to us on Friday as he discussed Lola’s undiagnosed condition. I remember asking Rob on Thursday (the night before the appointment) if he felt worried about what we’d find out. And ever so calmly, he said he didn’t feel worried at all and he just thought this was something that just happened to Lola. Oddly enough, I too, didn’t feel as worried as my normal worrying self would have usually felt. I just kept telling myself as long as it’s not terminal and as long as it’s not a degenerative disease than I can handle just about anything. And thankfully…oh thankfully…the doctor said just that “I don’t think she has a life threatening illness or some

  • Just Excited

    January 23, 2013

    I have much to share, but getting my thoughts out in a blog post is proving to be challenging this frigid morning in Indianapolis. I generally love my two hours of mama time (as if you all don’t already know this), but today I feel immense pressure to get life organized therefore even sitting still is proving to be difficult. Nothing is bad…in fact, life seems to be heading in a direction that I wouldn’t have dreamed possible a year ago when we moved back from Costa Rica. It just feels as if there is so much to do, to get ready, to learn, to research, to explore and just so much life to live. Oh emotions…you seem to surface at the most random times. Yet surprisingly (and

  • In Other’s Words

    December 24, 2012

    Is everyone ready for Christmas? Or Kwanzaa? Or Hanukkah? Or whatever it is that you might celebrate! We just finished up opening our presents this evening as we are off to visit my in-laws for Christmas. It couldn’t have felt more right being in our own home, playing our traditional Vince Guaraldi Charlie Brown Christmas and learning about Christmas traditions from each others past. Lola was more interested in opening the cabinets in the kitchen rather than opening her presents, but we still enjoyed ourselves nonetheless. I’ll post pictures of our evening when we return, but I wanted to give you all an update on our girl. Tonight This morning (I fell asleep hands on keyboard and all last night) I thought I would do something different and

  • A Different Perspective

    December 15, 2012

    Anyone who knows me knows that I am a creature of habit. I think, by default, most of us are. I like staying within my comfort zone because it is safe and it helps my neurotic brain feel like it is somewhat in control. Unfortunately this behavior has trickled over to Lola, I think in part, because I have learned I have virtually no control over Lola’s unknown condition. There are no books like “What to Expect When You Have a Child With Undiagnosed Developmental Delay” to learn from. I go by pure instincts on how to best care for Lola and I often have to think outside the box to best cater to her comfort level and abilities. So when my step-daddy Steve decided to put a

  • The Results

    November 14, 2012

    On Monday morning, without hesitation I called Lola’s neurologist in hopes to find out the results from her 24 hour Video EEG (VEEG). If you haven’t noticed, I am not a very patient person when it comes to my daughter and the healthcare industry. I want her to be as much of a priority to others as she is to me and I’ve had to realize that there are just certain things (like test results) that can’t be rushed. I spent the morning at work anxiously waiting for the call and it finally came…but unfortunately it was Dr. Zimmer’s nurse and not Dr. Zimmer herself. I’ll come back to why this differentiation is so important. The nurse said she had the preliminary results, but Dr. Zimmer was still

  • No “Big Brother” for Lola

    November 10, 2012

    With November being National Epilepsy Awareness Month, it seems almost eerily fitting that Lola would have her 24 Video EEG (VEEG) this past Wednesday. While seizures will always be branded in my worried mind because of the severity they had on Lola’s delicate infant brain when she was just under four months old, I don’t think of them as much these days. It has been a very long time since Lola had her last seizure cluster (one tiny cluster in October 2011 and other than that not a single one since she finished her emergency Prednisone doses back in May 2011). Ask anyone close to me and they’ll tell you I am still hypersensitive to seizures and will often ask my husband if certain movements Lola does look

  • My Heart Belongs Here

    October 22, 2012

    I have to admit…while I was thrilled I was asked to be a part of the auction committee for the iBCF, I must be honest and say my heart wasn’t in it as much as I hoped it would be. It wasn’t because I didn’t want to help and it wasn’t because I didn’t believe in the cause we were raising funds for (because the funds were to help kids just like Lola)…it is simply because Visually Impaired Preschool Services (VIPS-Bloomington) is making a direct impact on my daughters life…an impact I couldn’t fathom possible. VIPS came into our lives when we felt no one could help us understand Lola’s vision impairment. You see, the ISBVI is great for blind and visually impaired kids that are three years

  • Catching Up

    October 18, 2012

    As life normally does, it seems to continue to fly right on by and next thing you know it’s the middle of October. Unfortunately, I’m finding the quiet moments where I am able to sit down and share our life with all of you have become harder to prioritize. Thankfully, I am off of work for the next two days and after spending some much needed mama and family time, the babe (who has been sick with a cold and some awful teething) is finally napping, my hubby is busy working and I am sitting here listening to the ultimate comfort music…classical. I have much to talk about, but I’ve decided to not make this a long drawn out post. Instead, I’ll start where I left off and

  • Yes – Neurologists Really do Smile!

    October 4, 2012

    Just when I was starting to get into my groove on Wednesday’s, I have already had to change up my beloved schedule. While I normally work on Mondays, I took the day off so I could be at Lola’s neurologist appointment with Dr. Zimmer. I have finally come to terms that I am indeed the crazy mother who must attend every single neurologist appointment…they mean that much to me. And while I sincerely trust my husbands ability to tell me “word for word” what Dr. Zimmer said, I just know that my worried mind rests much easier when I hear the words myself. But come on…it’s not like it is just any appointment. It’s not to check out a diaper rash, it’s not a therapy session and it’s

  • Mama Time

    September 19, 2012

    Today I’m writing this post from my iPad as I sit quietly observing, relaxing and relishing in this alone time. We enrolled Lola in a Social Group that takes place at Children’s Therapy Connection (CTC) every Wednesday for two hours for twelve weeks. Children’s Therapy Connection is the therapy agency that employs the therapists that come into our home each month to help with Lola. While the group is supposed to be for children 24 months and older, they made the exception for Lola as sister needs some help in the social department. There are a few therapists at the facility that help with the eight or so children that are there. In each session they try to focus on one area of socialization in which this week’s

  • Waving “Hi”

    August 31, 2012

    Just a short clip of our little babe demonstrating her newly learned version of waving “hi”! Also some amazingly cute laughs from Lola! [media url=”” width=”420″ height=”315″ jwplayer=”controlbar=bottom”]

  • Slow and Steady

    August 30, 2012

    My apologies for not keeping up with life with Lola. We recently found out the results from Lola’s first round of genetic testing and those results came back normal. This should be good news, right? Well, it should be good news and I mean it is good news, but what had me in a stricken panic all last week was what has haunted me from the very first time Lola had her first seizure…the unknowns scare the hell out of me. This news rocked me emotionally into someone I hadn’t been in a very long time. In truth, I was a mess. I began to Google, I sobbed uncontrollably, I looked at Lola as if she were a science experiment trying to pinpoint what exactly her diagnosis was

  • Happy First Anniversary VIPS-Bloomington!

    August 9, 2012

    On Tuesday, Rob, Lola and I hopped in the car for a road trip to Bloomington, Indiana to celebrate VIPS-Bloomington’s First Anniversary. While VIPS (Vision Impaired Preschool Services) Louisville has been around for over 20 years, it wasn’t until mother and co-founder, Rebecca Davis partnered up with Teacher of the Visually Impaired, Ann Hughes to start VIPS-Bloomington as a way to offer services to the young visually impaired children of Indiana. We were honored to be asked to join the celebration with other VIPS families as it was a way for us to show our gratitude towards VIPS as well as connect with people that actually understand what it is like to have a visually impaired child. My favorite line, “VIPS-Bloomington will not turn

  • Backspacing and Blank Screens

    August 4, 2012

    Tonight as I sit here at the computer, I’m telling Rob that I just can’t seem to get my thoughts down in a blog post. It’s as if I have much too share, but every time I begin typing I quickly hit backspace, backspace, backspace until there is nothing but a blank screen again. I suppose this so-called “writer’s block” is running parallel with Lola’s undetermined diagnosis. We had one before and although lissencephaly was a hard diagnosis to swallow…at least we had one. But now Lola’s medical life has taken another unexpected turn when the lissencephaly diagnosis was retracted by a MRI performed here in the U.S. It’s as if someone is hitting backspace and all we are left with is yet another blank screen. I guess

  • A Toddler, an iPad and a bit of Bowling

    July 24, 2012

    You’ll have to excuse my absence over the past week, but life seems to get busier by the day. I love posting about our little existence in our corner of the world and I especially love sharing all of the great triumphs that Lola conquers yet some weeks not much goes on that is blogworthy. And rather than bore all of you with our day-to-day “normal” life, I like to save your time and my energy for the goods. I’ve been one tired out mama lately as I’ve been working full-time, caring for a child who is definitely transitioning into the “toddler” phase, making sure my newly semi-disabled husband is trucking along OK and much more in between. I’ve committed to a couple before work work-outs meaning my

  • Stronger, Walker, Bigger and Superstitious

    July 12, 2012

    “Lola stood upright much more today on her own. Did not need much extra sensory input today. Trying to pull to stand at surface from sitting – needs only balance help.” This was another great report from Lola’s physical therapist on Tuesday! Usually Lola needs a bit of a push to get up on her feet, but she surprised us both when she stood right up on her own. She then proceeded to balance at the bin for over a minute until her tired out legs just collapsed. But she just continues to get stronger every session and her PT always comments on how amazing her improvement is. [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”1″ style=”0″][/column] I definitely think part of Lola’s drive to

  • Just Be Honest

    July 6, 2012

    Blame it on the heat, but all I want to do these days is stay inside, put my jammies on early and snuggle with my little babe. You know you’re getting old when you are excited to have nothing to do on a Friday night except hang with your kid. Too bad it’s just after seven and my date for the evening is already asleep. Sadly…I’m probably not too far behind her! We’ve had a good week and Lola is amazing us each and every day. She had two fantastic reports from her therapists this week where both commented on how much her hand use has improved and how attentive she was during her sessions. The days of needing continuous input through practices such as bouncing have all

  • The Anat Baniel Method

    June 28, 2012

    A couple weeks ago, I was moseying around the “Special Needs” section at Barnes and Noble. While I don’t exactly know what Lola’s special need is, I was up for a bit of insight and what better place to look than at books. A midst the overwhelming stacks of books about Autism – that seems to be the most written about diagnosis in the special needs world, I found a book crammed in between. It was called, Kids Beyond Limits – Breakthrough results for children with autism, Asperger’s, brain damage, ADHD and undiagnosed developmental delays. Perfect, I thought. Lola is now classified as a child with an undiagnosed developmental delay since her lissencephaly diagnosis was retracted. I read the back of the book and I read a couple

  • One Year

    May 17, 2012

    Day 20 – May 17th, 2011 “Lola has now figured out how to take her pacifier out of her mouth with her hands, but then she desperately wants someone to put it back in. You’ll learn soon enough, my love. Today has been good. Lola has not had a seizure since yesterday which is a hopeful sign. I broke down and called the doctor’s office and asked his secretary why he hadn’t responded to my emails (maybe because he has at least 100 from me alone…just kidding….uh not really.). Turns out the Internet has been down. He was supposed to call at 6:30 pm for a check-in…it’s now 7:30 pm and no call yet. I really need to work on this whole patience thing. It’s starting to get

  • Blogging

    May 9, 2012

    My lack of posts only mean one thing…I am back to work. My mother reminded me that I have a lot of people following the blog now and while I am honored and thrilled to have such a following, I also feel the pressure of “staying on top of it”. I loved staying home with Rob and Lola while I was on medical leave because it allowed me to not only hang with my family, but it also allowed me to dab into more writing. We started this blog (back then LiveLoveTravelSouls) in Costa Rica as a way to stay connected with our family and friends. I actually never wrote for it because I felt my writing was inferior to my husbands witty charm. But then came a

  • The New New Neuro

    May 1, 2012

    Yesterday Rob took Lola to go see a new neurologist, Dr. Jennifer Zimmer, out of Riley Hospital for Children. You may remember, we were not impressed with the last neurologist and decided to find someone who showed a genuine interest in the care of our daughter. While I was not able to attend due to work commitments, Rob gave me a full detailed report of the appointment. Dr. Zimmer began the appointment by thoroughly examining Lola. The usual measurements were taken (weight, height, head circumference) and then she took a close look at her spine, her feet, her abdomen as well as her eyes. She went through a detailed history of Lola’s background with Rob and asked numerous questions about her care in Costa Rica, the tests that

  • Developmental Pediatrician

    April 26, 2012

    Today Lola had an appointment with Dr. Tom Lock who is a developmental pediatrician at Riley Hospital for Children. At this point in the game you sort of go into these appointments with little expectations as it comes as no surprise that Lola is developmentally delayed. But per the suggestion of one of Lola’s therapists, we thought it would be a good idea just to hear what he had to say. Seeing that we blew Lola’s general pediatrician away with our detailed knowledge of her conditions, we felt it would be nice to have someone understand the lingo we were speaking. Unfortunately we had to wait almost an hour for Dr. Lock to enter in which Lola was not in the mood to be playing anymore. She was

  • Enough About Me

    April 25, 2012

    How is Lola? Lola is awesome! I swear she learns something new every single day and we sit back just in awe of every little thing she accomplishes on her own. Sure we push her with therapeutic tools, but sometimes with developmentally delayed kids you have to just take a step back and let them flourish. Remember that line from my favorite children’s book, Leo the Late Bloomer? “A watched bloomer doesn’t bloom.” Well I whole-heartedly believe it to be true. She’ll get it when she’s ready and able. She may not be average on a developmental growth chart, but she’s still developing and that’s what matters. Plus average is such a mediocre term. Lola has this strong fascination with large objects such as doors, dressers, entertainment centers

  • Easter – Last Year

    April 8, 2012

    Thinking back to this time last year (a different date due to Easter being much earlier this year) gives me an eerie and chilling feeling. Last year Rob, Lola and I were living in Costa Rica. Rob and I ran a medical hotel that demanded all of our time and certainly all of our energy. But even with the distractions, we began to notice something wasn’t quite right with Lola. While we didn’t know it at the time, for about 10 days prior to Easter we were watching Lola have tiny, but enormously damaging seizures. Lola was never one to make much eye contact nor did she track objects, but her eyesight was diminishing, her smile was fading and the light within began to dim. She stopped progressing

  • Stepping Out in Style…Orthotics Style

    April 7, 2012

    This past week Midwest Orthotics and Technology Center called to state that Lola’s orthotics were ready. Seeing that I had missed the initial appointment due to work, I was still very curious as to how the orthotics would function. I have to admit I also had visions of Forrest Gump and the knee high braces he had to wear on his legs in an effort to walk correctly. I was prepared for anything, but was pleasantly surprised when I actually saw Lola’s orthotics. The orthotics tech took her time explaining to me about why Lola needs the orthotics and how they will help. Anyone that has been around Lola knows that she is a toe pointer. If we let her continue to do this, she would probably walk

  • El Museo

    March 29, 2012

    On Tuesday, Lola and I had a play date at the Indianapolis Children’s Museum with a friend and her son. The Children’s Museum is amazingly cool and I am excited that it is only a couple of miles away from our house. When we got there, we quickly realized the kids were on Spring Break as the place was a madhouse. It was rather loud and I worried about the noise being too much for Lola’s delicate senses. She retreated a bit in the beginning, but she soon adapted. A few months ago I probably would have felt a tinge of sadness seeing all of the kids Lola’s age crawl and probably walk. But Tuesday, I didn’t focus on what she couldn’t do. Instead I simply looked around

  • A Visit with my Mom

    March 16, 2012

    Last week my mom was here for a short five day visit. We had such a good time just catching up, spending time with Lola, eating lots of yummy meals and of course…shopping! While I love the time we got to spend together, it seems to get harder every time we have to say good-bye. For selfish reasons, I wish that she lived closer. I’m at the point in my life where I long to learn about domestic things from my mom such as when to plant perennial bulbs, how to get my grass to grow thicker and how to make my grandmas fried chicken for Rob. We would go on walks throughout the neighborhood and she would point out tips for my future gardening days. It’s those

  • Improvements and Much “More”

    March 2, 2012

    Lola girl is finally over her first cold and the second top tooth is ever present which means…our happy baby is back! [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”1″ style=”0″][/column] We have witnessed such changes in Lola this past week. There is a level of awareness that is emerging in really all aspects of her life. She is becoming aware of her body and its movement. She watches her hand as she waves it by or she’ll look at her toes as they wiggle. The other day at lunch, I snapped this photo of Lola observantly watching as her finger tapped the table. She’s also much more purposeful as she plays. Of course she still bangs everything in an effort to hear a noise

  • In All Honesty

    February 24, 2012

    Last night my mind wandered off to a place I hadn’t allowed in to go in a long time…I began to think about the far distant future for my Lola. Yesterday Rob, Lola and I went to the Developmental Disability building to fill out an application for a waiver in an effort to make sure Lola is taken care of as she ages. The waiver offers many services for the developmentally disabled such as home assistance, home modification help, entrance to assisted living homes, wheelchairs and much more. The current waiting list is 10 – 12 years as there is no money in the State for these services, but if something were to happen to Rob or I, Lola would sort of be grandfathered into the system if

  • A Visit, a Tear and a lot of Lessons

    February 23, 2012

    On Saturday, we had the pleasure of having Rob’s mom come to visit for a couple of nights. While I know many people gasp at the thought of their mother-in-law coming to visit, I on the other hand welcome Kathy with wide open arms. I could go on and on about what an amazingly special woman she is, but I’m trying to coerce her into writing a post about her time with Lola. I have a feeling if she chooses to share her thoughts, you will quickly see how angelic she is. The weekend was spent just catching up, eating good food, Kathy showering us with awesome Christmas goodies and she was able to give Lola lots of grandma love. Unfortunately I had to work most of the

  • “Normal” Never Sounded so Good

    February 17, 2012

    Well first off we have BIG news to share…Lola’s EEG came back normal! Thankfully there were no signs of seizure activity which means that either the medicine is working or Lola is simply not having seizures. It is too soon to wean her off of the Trileptal as seizures could still do significant damage, but the fact that she is still seizure free is an excellent sign. We were told the doctor would call if she wanted Lola to have a 24 hour EEG to determine if Lola is having seizures as she sleeps, but the fact she hasn’t called yet leads me to believe that Lola is simply living a seizure free life. We are incredibly grateful for all of the extra love and prayers you sent

  • An EEG and an Afternoon

    February 10, 2012

    This morning we were up bright and early to head down to Riley Children’s Hospital for Lola’s first EEG in the United States. I had been to two EEG’s with Lola in Costa Rica, so I was interested to see how the two locations would differ. Have you ever seen such a cute pilot before? We were immediately called back and the nurse began to wrap Lola up like a little burrito in order to restrain her arms. Most of you that read this blog know very well Lola does not like any type of restraint (hugs included) therefore we knew it could go one way or the other. Either she would scream and protest or she would actually enjoy it given her early days of being swaddled.

  • Therapy Began

    February 9, 2012

    I had been anticipating Tuesday since we said our good-byes to Moises (Lola’s Costa Rican PT) this past November. I worried Lola would fall behind without the help of Moises and Melissa as we simply didn’t know what was to lie ahead in her future yet we knew we were seeing something awaken within Lola thanks to their team. So the long drawn out process it took for Lola to get approved for First Steps was agonizing. But then something happened I didn’t expect (and shame on me for not thinking so)…Lola began to blossom developmentally without the help of any therapist or team. She just started to get it. She taught herself how to sit up on her own, how to sit up from the lying down

  • The Tour and the Neuro

    February 1, 2012

    Yesterday Lola and I went with a close friend to visit the Indiana School for the Blind and Visually Impaired (ISBVI). I was warned up front that many times emotions can get the best of parents (mothers especially) as the school has children on all different levels of the visual spectrum. I hesitantly thought about it and decided that touring the school was indeed something I wanted to go through with. While I have my ups and downs regarding Lola’s disability, her well-being and future are always what weigh heavy on my mind. Driving up, I felt jitters of excitement. I didn’t expect to feel as drawn to the place as I did. It was established in 1847 although it moved from the original downtown location when the

  • Our Week

    January 29, 2012

    This past week has been a rough one for poor little Lola. I guess I should say it has been a rough week for both Lola and Rob. Lola’s first top tooth has finally made its appearance, but damn has it been painful for her. She has wanted nothing but to be near one of us and, surprisingly, another side effect of her teething has been an incredible increase in hunger. We recently began the transition from formula to whole milk, but it really hasn’t been a transition at all as she simply loves milk! She went from drinking three to four bottles of formula a day to now at least five to six bottles of milk along with at least two full solid meals and an ungodly

  • Last Step with First Steps

    January 21, 2012

    Yesterday we had an in-home meeting with our service coordinator from First Steps. Ms. Davis came out to welcome Lola into the program, explain to us what to expect next and finally she wrote up a 90 day therapy plan that Lola’s therapists will try to adhere to. We were to come up with short term goals for Lola which included everything from creeping to crawling to learning how to stack toys and much more. Lola was advised to have a physical therapist, an occupational therapist and a developmental therapist who will focus on her vision. Each therapist will come into our home on a weekly basis for one hour per session. So that means Lola will get three hours of therapy a week, in our home and

  • I’m Feeling Title-less

    January 21, 2012

    So often in this blog, Lola’s condition and progress is the main subject of the content. I happily provide this information as I think it is important not only for our family and friends to stay updated with her life, but I also think it is crucial for other families to see Lola’s life with lissencephaly and West Syndrome in hopes to share some inspiration. But lately, Lola’s life with these conditions has not been an ever present part of our daily lives which is why I have steered away from blogging about every minuscule detail. No longer do I wake up each morning and think about lissencephaly or seizures. Sure it crosses my mind, but Lola is blossoming right before our eyes and you just kind of

  • First Steps Evaluation

    January 4, 2012

    In the world of a one year old, they don’t know that it is actually their birthday. They may understand that their parents are ridiculously cheesy for some reason, they may be excited about the presents they get to open and they will especially love the cake they get to indulge in, but for the most part…it’s just another day. So when we were asked if today would be a good day to have the therapists come out to evaluate Lola, we happily replied “yes”. Two therapists came to our house at 10:30 this morning to take a look at Lola. They simply wanted to observe her as she played all while asking us numerous questions regarding Lola’s life. We told them all about Lola’s long medical history

  • Year in Review – 2011

    January 2, 2012

    When trying to sum up 2011, I thought what better way to share our ups and downs than through my own words? Therefore I decided to gather a compilation of my own posts from the last year. The year started out with the birth of the most awesome baby ever, we went on to figure out about being parents, Lola began to have seizures, coping with the reality of having a child with a condition, more conditions were found, we felt a tug to move back to the U.S., we traveled, we loved, we moved and much more. While the subject matter in some of the posts is not “my favorite” from the year, it is in fact the reality of our lives. Life wouldn’t be life if

  • Lola is Awesome and Being Proactive

    December 29, 2011

    Today was a girl’s day out for Lola and me. I have been so busy working, I felt as if I had been missing out on quality time with my girl. We had intentions of going to the Central Library, but unfortunately it was closed today. So we went to the pool at our local Y Center instead. Is it just me or does my baby now look like a little girl? I know I’m biased, but what a doll! The pool was a lot of fun, but I also had other intentions for going. Lola’s therapy has been lacking because we have tapped out the exercises we were shown in Costa Rica. Lola is bored and while we are creative with her daily activities, she also needs

  • The First Step with First Steps

    December 21, 2011

    Yesterday the intake coordinator for First Steps came out to the house to enroll Lola in the program. First Steps is an early intervention program that is funded by the State although you are required to pay something based on your income (if not covered by insurance). They believe that every child (from birth to three years) with a disability or developmental delay should be provided the services they need to help them excel in life. Under Federal Law, every family has the right to an evaluation, but not every child will be allowed into the program. There are certain criteria that the child must meet in order to be approved for services. The child must be developmentally delayed by 20% in two areas or 25% in one

  • The Pediatrician

    December 13, 2011

    Today Lola had her very first U.S. pediatrician appointment with Dr. Patrick Kelley out of IU Medical Group. Of course being away from what and who you know is a bit overwhelming…at least for this mother, but I was pleasantly surprised with the office, the nurses and especially the doctor. Rob and I went to the appointment loaded with Lola’s medical records translated into English, we had her CAT scan and MRI images and we also went in with a wealth of knowledge regarding our daughter and her conditions. The doctor could quickly tell we knew what we were talking about as he just sat back for a few minutes letting us explain what had happened with Lola. He would chime in from time to time asking us

  • Still Catching Up – An Old Post

    December 7, 2011

    In Costa Rica, Lola began to hit some pretty incredible inchstones. She began to mimic kissey noises when we made them first. She began sitting up unassisted for extremely long periods of time although she still does not understand the concept of falling hurts and I take full responsibility for that. I just can’t sit and watch her bang her head repeatedly. Once we are settled in to our house where we have a bit of carpet, I will be more apt to letting her fall. She also began to push herself up on all fours which is HUGE!! She doesn’t know where to go once she is up there, but she’ll figure it out in due time. The chica is so strong she can even do the

  • The Last Phase of PT With Moisés – Lola Must Go to the World

    November 18, 2011

    Sadly, today was Lola’s last appointment with Moisés. It was originally scheduled for next week, but Moisés is going to be in Mexico and we didn’t want to reschedule an appointment on one of our last few days in Costa Rica. So today was as good as any. We wanted to bring Moisés a thank you gift, so I headed to this cute little store in Ciudad Colon called Organica. It is a juice/snack bar, but she also sells everything from organic chocolate, hammocks, soaps, teas and a lot of yoga related items. Remembering that Moisés was into yoga, I found him Mala Beads. He was thrilled with the memento and immediately put them on as we told him he was to think of Lola every time he

  • “Inchstones”

    November 14, 2011

    “Is Lola {blank} yet?” I get a lot of this question. And I mean a lot. Is she crawling? Is she sitting? Is she talking? At first this question kind of stung and I would get very defensive for the sake of my daughter. Now I simply reply with “No she isn’t yet, but this is what she is doing.” When Lola was diagnosed with cortical visual impairment, I joined a Facebook group called “Thinking Outside the Light-Box: Vision Therapy Support Group” per the advice of my virtual friend, Amanda. It is a place where parents of children with CVI can go to share ideas about vision therapy exercises, equipment or aids that are helpful and most importantly it is a “safe place” where we can openly ask

  • West Syndrome

    November 12, 2011

    My virtual friend, Bianca recently wrote a post about the experience her son Skylar had with West Syndrome. Skylar has a rare developmental birth defect called Schizencephaly. Bianca posted her seizure notebook and she spoke of the constant monitoring, the worry, the fear and many other emotions that comes along with having a child experience this rare form of epilepsy. It was only by chance we found each other in the Tumblr blogging world and I think I can speak for both of us and say it is so nice to have someone that understands the scary world of West Syndrome. I had a draft in my blog cue that was eerily similar. These are the logs Rob and I kept when Lola was first put on Prednisone.

  • Only One More Left

    November 12, 2011

    Thursday my mom drove Lola and me to therapy with Moisés. It is hard to believe we only have one more session left with him. I’ve been a bit emotional lately and I was in tears telling him how much he has meant to our family. The physical strength and transformation we have seen in Lola is all thanks to Moisés. You could see the happiness he felt knowing how far Lola has come. His quote of the day was “she’s doing so great” which of course was like music to our ears. Lola spent most of the time vertical in what Moisés calls the “ligas”. This is crucial for Lola’s balance and it helps for her to understand the feeling of being upright. She did amazing! She

  • A Trip to the Dra.

    November 8, 2011

    Today we went to get Lola checked out by her pediatrician, Dra. Liana Castro Poll. The last time we saw Dra. Castro was when we had our suspicions that Lola had West Syndrome. I remember while frightened I confidently wrote to Dra. Castro with my thoughts on Lola’s “spasms” and rather than Dra. Castro telling me I was crazy, she said she would squeeze Lola in that very day. We are eternally grateful that Lola had a doctor who actually believed us. She was cautious in her examination, she was concerned, but she remained calm and caring. She immediately gave us instructions to get Lola an EEG as well as a good neurologist. She knew if Lola had West Syndrome that time was of the essence and she

  • Ultima Cita con Melissa

    November 7, 2011

    On Saturday we had our last appointment with Melissa and I must admit it was pretty sad. She was probably wondering why I was teared up, but Melissa and Moisés have done wonders for Lola. They truly are the reason for Lola’s amazing progress. Sure we ourselves work with Lola all day long, but it was their tools and guidance that enabled us to help our daughter. They are true professionals, but they make you feel like you are indeed part of their team. I only hope we find therapists as compassionate and caring as the ones we have found here in Costa Rica. It had been almost three weeks since we had last seen Melissa and she was thrilled to see the improvement in Lola’s vision. She

  • Epilepsy Awareness

    November 3, 2011

    November 1st marked the beginning of National Epilepsy Awareness Month so what does this mean? It’s time to learn more about the condition and help raise awareness. The CDC estimates that over 2 million people in the United States suffer from some type of epilepsy. They expect to have over 140,000 new cases reported next year. Unfortunately it is a condition that is rarely talked about even though it is reported that $15.5 billion is spent on medical costs as well as lost or reduced earnings. It is becoming an epidemic as we are seeing more cases of infant epilepsy (1:3200 live births). I’ll be honest and say I didn’t know a thing about epilepsy until my daughter was diagnosed with it. That is often how we go

  • Halloween and Happiness

    October 31, 2011

    I know we’ve been absent for a few days, but Rob and I have begun the tedious task of preparing to move. While we still have a month before we board that plane back home, we would like to actually enjoy our final weeks with our family and friends rather than scrambling around to get everything in order. We only have two more weeks of work and then we are libre! I want to soak up that time with my Mom and Steve because as excited as I am to go home, I’m sure going to miss them. So not only have we been working at the hotel, we’ve also been getting medical records translated, ordering Lola’s mountain of medication we intend to bring back, trying to sell

  • Phase Thirteen of PT – Distributing Weight

    October 28, 2011

    It is hard to believe that we only have two more physical therapy sessions with Moisés. I can remember the first time we walked in his place, my heart sank with fear. From the outside, it was just another Costa Rican house. In the waiting room, it was just another Costa Rican living room. But boy did my attitude change when we walked into Moisés’ working area. I knew in that moment we were in the right place. So it is sort of bittersweet counting down the number of sessions with him. Happiness fills my heart because I’m excited to move on with our lives yet a tinge of sadness has overwhelmed me knowing that Moisés will no longer be Lola’s therapist. Sure he’ll stay on to help

  • A Moment of Clarity

    October 23, 2011

    Every time I fall on my face in emotions, I usually have a tendency to pick myself up, brush it off, move on for a moment and then I fall yet again. After my last post, I received so many encouraging words of support. My two best friends in Michigan even sent me flowers to help get me out of the dumps. For days I cried more, I worried more and I couldn’t stop thinking about the future. But where was Lola in all of this? As I was grieving over a diagnosis, I had my beautiful daughter right there in my arms. And while she may not see me the way I had envisioned her to see me, I’m certain she could feel my bad energy. What

  • Pity Party – Table of One

    October 20, 2011

    Oh where to begin? Early this week, I was feeling great. My outlook on Lola’s condition was positive. I was feeling hopeful about our move. I was on a bit of an emotional high. A good emotional high. I had lists in my head of things I wanted to improve: More veggies less carbs More books less Tumblr More water less caffeine More positive thinking less worrying More exercise less excuses More change less monotony More phone calls less emails I was feeling good about my plans. I began taking an anti-depressant because I knew my mental state was being altered by stress and I was OK with it. If you need help than why suffer? Then on Tuesday (18th) Dr. Luna sent over his official report. What

  • Ironic

    October 16, 2011

    Yesterday I was telling Rob that it’s strange Lola never looks at me while I’m feeding her solids. She will look everywhere but directly in front of her. So we aren’t doctors, but we do know a lot about Lola’s diagnosis’. We are guessing that she is in sensory overload. It’s as if the sounds, the taste of food and the vision is simply too much for her. It’s just like when I use the vision images for her to track. If I don’t say what the image is and make the appropriate sound than she tracks them. Yet if I overload her with noise while moving the image, she just starts looking elsewhere. So I’ve become very aware of how many senses Lola is using at one

  • Phase Twelve of PT – Balancing the Equilibirum

    October 16, 2011

    Seeing that Lola had the cluster of seizures at last Saturday’s OT appointment with Melissa, we were asked to come back and try again. This week Melissa wanted to work on Lola’s equilibrium in an effort to help Lola find her balance when she is trying to sit unassisted. Lola understands to put her hands down as protection if she falls forward, but falling backwards is a whole other thing. She likes it. She thinks it’s fun. I know Moisés said to let her fall and perhaps I am being that overbearing mother, but Melissa even agreed that falling on a hard mat is not safe. Especially with the seizures happening last week. When we get to Indy, she’ll have a room with carpet so I’ll let her

  • PT with Moisés and I’m a Freaking Nervous Wreck

    October 14, 2011

    Usually I write what phase of therapy Lola is in, but we are continuing with the exercises Moisés had assigned before. The girl is doing awesome though! Moisés was so thrilled to see her creep backwards. He then asked if she cross creeps meaning putting one hand over the other in an effort to see what is next to her. Yes, she in fact did this a few days ago while we were doing mat work on her belly. I was lying to her side and sure enough she began to kind of creep in a circle to face me. I didn’t think much of it although I was stoked to watch her look for me, but Moisés said this is all part of the crawling process. 1.

  • Weekly Edition of Letters to Lola

    October 14, 2011

    Hi Lola my name is Gina and I have never met you or your mom. Although I have met your Nana Rita. I have been following your moms story for a long time. Through her move to Costa Rica to her wedding to her pregnancy with you and your birth and now through your diagnosis with West Syndrome. I am amazed at what a strong little girl you are and what a strong mother you have. Reading about your accomplishments makes me feel so happy. You are one strong little Chica and I think alot of people can learn something from your family. How to take a negative situation and make it a positive one. I love how your mom never complains but stays very strong and positive

  • A Letter from Moisés

    October 11, 2011

    I can’t put into words how much we are going to miss Moisés (Lola’s PT)! He has such a big heart and he works so well with Lola. I wrote to him explaining Lola’s new diagnosis and this was his response (I google translated it as it was in Spanish): Hi Meredith: First of all a big hug for you Lola. I did not answer yesterday because I had to speak with Dr. Moon first. He explained what he saw on the exam. I think that is good news. First, if the rest of the brain is normal, that’s great and good news, we will be many opportunities to work on your development box to a normal life. Second, the injury is reduced only to the occipital lobe,

  • Coping Mechanism

    October 11, 2011

    A couple of weeks ago, Lola’s first tooth popped through. She wasn’t overly fussy and she didn’t keep us up all night with bouts of crying. Sure you could tell something was off, but I had been expecting this terror of a child to emerge because obviously teething hurts. She must have a high pain tolerance because again, we can feel another tooth getting ready to make its grand appearance. Yes she’s drooling like crazy, she’s yanking on her ears and she’s not taking to the bottle as well as she usually does, but other than that she seems to be handling the pain like a trooper. But yesterday she began to make this scrunched up “I’m in pain” face and we are attributing it to her little

  • Naive

    October 9, 2011

    Lola is doing great today. Thankfully we have not seen any more seizures since the episode yesterday. I spent the entire day near her as it was crucial to see if the seizures continued. Sleep last night was not exactly restful as every movement I heard, I quickly looked to see if she was seizing again. But who knows? Maybe it was just one episode. I guess I was a bit naive about the seizures coming back. I thought because she had responded so well to the medication the chances of her seizing again would be highly unlikely. So I can’t even begin to put it into words the utter shock I felt when I saw her tiny arm shaking yesterday. I am crying now as I write

  • He’s Not Worried

    October 8, 2011

    I just got off the phone with Dr. Luna and he did not seem overly concerned about the seizures. I explained that Lola’s daily dose of Trileptal was 2 ml and asked if perhaps she needed a stronger dose given that she now weighs more than she did five months ago. He agreed that her dose should be upped and put her on 4 ml each day. He said to call if the seizures continue, but hopefully this will work. Please, please let this work.