A Long Lola Update

It 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. 048 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 her. Along with daily classroom routines, she also gets to attend alternative classes like music, PE and art. 017 All of her therapies (except the patterning therapy and the tool of hippotherapy) are conducted right at the school so strategies are implemented as they are forming. It’s comforting to know she’s around specialists who not only understand the vision aspect of her learning but they have also worked with hundreds of kids just like Lola. OK, maybe not just like Lola as she is truly one-of-a-kind, but she’s in a learning environment conducive to her vision impairment and her other setbacks. Every day her teacher sends home a journal in which we get to read about Lola’s accomplishments, challenges or just general school news. Besides seeing Lola, reading in her journal is my favorite part of the day.


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The journal makes it feel like I’m reading a great memoir and my daughter is this amazing main character. I guess, in part, there is some truth to this. But it’s in this journal that I read about Lola walking in a walker for the first time (as you saw in the video – sister is moving these days), it’s where I read about new words she is saying (uh-oh, thank you and diaper) and just recently, it’s where I read about her attempting to use the potty at school (we have even begun potty training at home too). The journal not only gives me a glimpse into Lola’s day, but it also gives me a reference point on all of the amazing accomplishments she achieves. It’s remarkable to read in the first few pages where her teacher writes about Lola crying daily as she adapted to the new environment to just last night when I got to read about Lola accurately participating in a song. The journal helps put part of my worried mind at ease, but unfortunately…I have had much bigger worries for my little girl lately.


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The day before Christmas Eve, Lola had another 24 hour video EEG (vEEG). We had upped her Trileptal and the neurogeneticist wanted to see how Lola’s brain was responding to the increase. You may remember Lola was having sub-clinical seizures (seizures that are happening but cannot be physically witnessed) during her last vEEG. After the increase in Trileptal, Rob and I noticed positive changes within Lola like her increasing use of eye contact, her ability to focus on tasks and her overall general demeanor seemed better. But sadly, the vEEG still showed signs of abnormal spikes in her brain as well as the subclinical seizures. Now subclinical seizures aren’t necessarily damaging, but it is best for Lola not to be having any type of seizure which is why it’s important to get them under control. After several weeks, I was finally able to get in to see her doctor to discuss a plan of action. Yet unlike most visits, I walked out even more confused than when I entered. I tried to explain things to Rob – and usually I am stellar at relaying medical information regarding Lola – yet everything seemed blurry and confusing. After a few more clarifications, it was decided to increase Lola’s Trileptal yet again and we would also begin B6 (sometimes the vitamin deficiency can cause intractable seizures) a couple of weeks later to see if we noticed any changes. But unfortunately, before we could even increase Lola’s medication, we saw signs of the aftermath from a clinical seizure she must have had at night.

It was a Saturday morning and we were just waking up to begin our day. Rob was on the couch (because Sebastian is up so much at night) and oddly enough, Lola was sleeping on the hardwood floor. We tried to arose her yet she was lifeless, clammy and sweating. Trying not to panic, we brought her into our room to try to figure out what was wrong. We thought perhaps she had a bug, but if anything, her temperature was low not elevated. Her eyes were glassy, her body felt cold and when you picked up her arm, it quickly dropped back down. After a few minutes, we realized she most likely had had a seizure and this was the aftermath. She sat at the dining room table and ate bites of breakfast, but the light in her our little girls eyes was not there. Her body was present yet she was in a far off distance. She laid her head down many times but continued to want to eat. And just as we were getting ready to call it quits for breakfast, she simply snapped out of it. The haze was lifted and she woke up as if nothing even happened. We were warned that these were signs to look out for, but it was still a sad sight to see. Thankfully, we have not witnessed anything like this since, but we have accepted that epilepsy may be part of our battle. We were told this by Lola’s Costa Rican neurologist when she was just four months old, but Lola had responded so well – or so we thought – to the anti-seizure medication that maybe, just maybe there was a chance she wouldn’t have epilepsy after all. Unfortunately she does, but just as we’ve risen above every other diagnosis, we will do the same with this one.


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In lighter Lola news, she is now wearing glasses! While cortical visual impairment is the brain’s inability to process images, her ophthalmologist wanted to try out glasses for a number of reasons. He thinks by magnifying images, Lola’s brain won’t have to work so hard to process what she sees. In addition, Lola’s left eye has a tendency to pull in so by prescribing bifocals he hopes the muscles in her eyes will build therefore helping her eyes straighten out. Regardless of what they will do, her glasses sure look cute on her!


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But as angelic as she looks in these photos, I must admit our little girl is becoming a defiant toddler. And while I welcome Lola to experience emotions such as frustration, anger, confusion, jealousy and more, I kind of want this stage to leave as quickly as it started. These days when we say no, she does it anyway. When we try to redirect energy, she gets upset. When we try to help, she protests in frustration. Whatever we try to do, it is wrong. When this behavior first began, I felt guilty for getting upset with her. I was doing exactly what I asked others not to do…I was treating her differently because of her delays. I kept coddling her rather than trying to adjust the behavior because I didn’t want to make her feel bad. How could I discipline a little girl who can’t express herself through words? How could I punish a child who may have had a seizure the night before? What I realized is if I keep justifying her behavior, she is going to grow up blaming every action on her condition. There will never be any accountability because I let her think there didn’t need to be.

So while my own reactions are still a work in progress, I can say I’m learning to treat her like any other ‘typical’ toddler. She needs structure, discipline and she needs to know right from wrong. It will take getting used to saying and standing behind the word no especially because those big eyes can be so endearing and sister sure knows how to play me with them. But just as she is growing into a little girl, I’m growing as a mother. Up until now, I haven’t had to be the discipliner because Lola never really got into trouble, but she is doing what all children do…she is pushing boundaries to see how far she can get. And while I may not like this behavior, I know it’s an important part of development.

As challenging as this time has been, I know it’s a phase just like the many I had as a young girl growing up. I think my mother recently called them “paybacks” for the years of turmoil I put her through. But regardless of any condition or delay, my baby Lola is growing into a little girl. Even though she can be an absolute terror some days – as can all kids – I am so proud of the individual she is becoming. She is a bright, beautiful, smart, sassy and hard-working little girl and I sure feel lucky to be her mama. Now ask me in a 10 years when she’s a defiant teenager and I may change my mind, but I’m sure she’ll find a way to win me over yet again with those darn eyes.


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