Anyway, I am writing to wish my beautiful wife a Happy Mother’s Day. Seeing as she blogs about most details of our life with Lola, I thought I should share a little more about her with the rest of you who follow Lola and her progress. As our life has gone through many changes over the past few years, I can’t help but feel a burgeoning pride and overwhelming love for Meredith. I was never hesitant to spend my life with her, but every day I am with her just shows me how much of a great decision I made to decide to ask her to be my wife. And when you think that feeling can’t feel the least bit stronger – that you’ve exhausted the depths of that well – you go and have a child and your heart opens up a thousand-fold. And so has my love for Meredith.

There are the small things in a relationship that only those two can share and enjoy. It’s in those moments where my heart grows and deepens with a tremendous amount of respect and admiration for Meredith. It’s the minor things, like how easily Meredith can soothe Lola with a simple whisper. Or how just her presence in a room can calm not only Lola, but bumbling old me trying to be the best Dad I can be with no clue in the world how to be so. But it’s more than just those things. Meredith just is. She is thoughtful, positive, uplifting, graceful (even in her clumsiness – which she has somehow passed to me), and she is simply the most beautiful person I have ever met.

Every single day I feel blessed that she is still here with me. She is the most amazing mother, no matter how much she walks this path blindly, never having been a mother before and even so, not knowing the difficulties she would face in helping her daughter get a firm grasp of this world. And even when faced with the difficult realities with Lola, she didn’t wallow in it. Instead, she came to me and talked about how we could help others. How we could begin to share with others our experiences and knowledge so that other mothers wouldn’t be quite as lost. And, to me, that is the most selfless and admirable part of Meredith. She embodies love and in turn defines what being a mother truly is – pure love.

I won’t take too much more valuable space on this website, but I will say to all the mothers out there who come to this blog to share, find answers, or simply follow our daughter’s life – Happy Mother’s Day! And to Meredith, I want to simply say that I love you for being you. You have truly made this a life worth living, and for that I thank you. Happy Mother’s Day my beautiful wife!

Lola loved the blue arena where the dolphin show took place.

First train ride.

I know I'm perverted, but I couldn't help it!

As an added bonus, you receive a free admission to the White River State Park Gardens when you purchase Zoo tickets. I have to say while I loved the Zoo, the Gardens were stunningly beautiful.

Dragonflies, thankfully, always seem to find us.

Since Lola was born, I have wanted to feel needed by my child. I know this seems silly, but I truly believe it is an innate part of being a mother…at least for me. Of course Lola needed me and proceeded to show me in her own way which I had learned to accept. But I selfishly wanted to hear her kick and scream as I left for work. Or giddily shout with excitement as she heard me come home. At the cafe I work at, I see mothers act so annoyed when their kid throws a tantrum because they are going to refill their coffee and I often think what I wouldn’t give to have that. I’m sure it sounds preposterous, but it’s my simple truth.

Yet within the last few weeks, Lola has been a true mama’s girl. Of course she loves her daddy, but she has been especially affectionate toward me. There was a time when I could put Lola down for the night with just her paci, her giraffe and a kiss. But these days Lola will fuss and fuss until I finally pick her up. I’ll lay her next to me in the bed, but that’s still not good enough. She wants to fall asleep in my arms. I’m sure you’re thinking “bad habit”, but for now she needs me. She clearly feels comfort and safe and that is my job as her mother to provide that for her. She has always been an independent little girl so a bit of extra snuggle time is fine by me.

And hugs.

Did I mention the hugs?

Rob and Lola’s PT have been working so hard to teach Lola how to hug…for me. And as of lately, the girl hugs me. She heavily falls into me. She rests her head on my shoulder and takes a sigh of relief as if she had been waiting for that moment. Little does she know, I’ve been waiting for that moment too.

A perfect Mother’s Day gift if you ask me.

Yesterday morning we were lucky to have another visit with Ann Hughes from VIPS-Bloomington. The session started out with Ann singing the “Hello” song for Lola which she so beautifully plays on her ukulele. For some strange reason, I can’t help but hold back the tears every time she plays it. I think I am just thrilled to have found someone that can help us understand our daughters vision impairment. Ann explained the session would be a lot of paperwork as she needed to do an assessment of Lola’s vision. She put out several toys to keep Lola occupied while we began to score Lola’s vision capabilities on Dr. Christine Roman-Lantzy’s Range Rating Scale. The scale ranges from 0 (nearly blind) to 10 (normal functioning vision). Based on the answers of function-ability from the three of us, Lola is currently at about a high 4 to low 5 on the CVI scale. Considering we once thought Lola was nearly blind, I think this is a remarkably high number for Lola. In about three months, we will do another assessment to see where Lola falls again. This will help us understand where Lola’s strengths and weaknesses are and what areas we need to work on with her. I must say it was rather comforting to have a better understanding about Lola’s use of her vision. Nobody has been able to tell us what Lola actually sees and while the CVI scale isn’t a clear cut answer, it at least provides us with some insight on Lola’s vision. We are currently working on permission to publish the scale to give you all a better idea as to how the number system works.

Along with the CVI scale, Ann applied a few other vision tests on Lola. She first wanted to distinguish if Lola had a preferential color. Lola did quite well with greens and of course yellow and reds. We found blues were hard for Lola to focus on so Ann suggested we bombard Lola’s visual cortex with a plethora of blue items. We are to simply look around the house for anything blue and set it on Lola’s black blanket. This overload will help stimulate that cortex so that blues are easier to recognize. Ann also tested other areas such as ability to recognize contrast, latency and a couple of blink tests. There was no right or wrong way for Lola to respond to these tests, but Lola did quite well. Latency or a delayed reaction at grabbing objects was there, but the number of seconds it took Lola to reach at the object was quite small. Lola was able to recognize higher contrast pictures than lower. And while Lola did not respond to a visual threat such as a hand in her face, she did respond with a blink when a finger was put on her nose. It brought such joy to Rob and me as we watched all that Lola was able to do with her vision. It has been a hard struggle for our girl, but she has worked hard to get where she is today. Ann offered us many great ideas to help Lola understand her own world. She closed the session with a brief biography in how she began as a visually impaired teacher. Again, I can’t say enough good things about Ann and the VIPS program. My only regret from the session is that I didn’t take any pictures!

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 have been performed, Lola’s seizure history and also her current medication list. After her questions were answered, she patiently answered my long list of questions I had given to Rob. She did not rush him and she did not seem bothered by the continuous questioning. She was calm, collected, knowledgeable and informative. She was exactly who we were looking for for our daughter.

Here are some topics that were discussed:

A Diagnosis: Apparently the reason why Dr. Patel never contacted us with an exact diagnosis for Lola was because the MRI CD from Costa Rica was difficult for the radiologists to read. I accept this excuse for Dr. Patel, but I am still appalled that even a phone call wasn’t place to tell us this news. Dr. Zimmer took the MRI CD again to try to get a better reading of it. She said if it was unreadable than perhaps she would order another MRI for Lola. But based on the images she saw, she leaned more towards an isolated lissencephaly diagnosis with a touch of pachygyria just as Dr. Luna did in Costa Rica. She explained that the lissencephaly diagnosis is gauged by how smooth the brain is whereas a pachygyria diagnosis is gauged by how thick the matter is. From the images she could see (so a preliminary hypothesis), she thought Lola’s brain was smooth in the occipital lobe (vision) and the gray matter was a bit thick in some areas. Regardless, it does not change her prognosis as each and every individual case is different. Our goal in getting a diagnosis is not to try to figure out Lola’s capabilities in life, it is simply to have an accurate term for her condition. Dr. Zimmer promised to follow up in the next two weeks regarding the reading of the images.

Seizures: Dr. Zimmer said Lola has a 50/50 chance of going on to have another form of epilepsy as she ages. There is simply no way to predict whether or not she will have seizures as it is a matter of how the connections in her brain are moving. If Lola is to have a seizure, it is not deemed a true medical emergency at this point. We are to contact Dr. Zimmer to determine a plan of action. If Lola were to have a seizure lasting longer than 5 minutes, we will be given a prescription for Diastat (valium) to be administered rectally during a seizure. Dr. Zimmer said seizures can come in many different forms so we are to keep an eye out for Lola staring for long periods of time, fixed pupils, twitches or shutters. Thankfully, Lola has showed no signs of seizures for almost a year except for one tiny cluster in October 2011 that we attribute to a very hot Costa Rican day.

Medication: Lola is to continue to take Trileptal 2ml twice a day until she is two years old or until she shows seizure activity. If Lola is seizure free then we will begin a slow wean off of the drug in which we already are as her dosage has not been increased since October 2011 even though she has increased her weight. Dr. Zimmer felt Trileptal was a safe drug to use and if anything felt the side effects were quite mild compared to many other anti-seizure medications on the market.

Development: Dr. Zimmer was quite impressed with Lola and her development. Obviously Lola is delayed, but Dr. Zimmer said the real advances in the development come from therapy, within Lola and the help from her attentive parents. She told us simply to continue with everything we are already doing as Lola is on a good path right now.

Neuro Tics: As of recently Lola has begun to exhibit signs of neurological ticks such as shoulder shrugging and head shaking. It is interesting because we kind of forget that she really does have a neurological condition. Obviously we know she does based on the developmental delays and the need for medical intervention, but she is just Lola to us and her normal is our normal. So when these tics started to appear, it quickly reminded us that Lola’s brain works in a unique way comparatively speaking. Dr. Zimmer said the tics are nothing of concern, but they may come out in many different forms. It is simply a way for Lola to stimulate herself and to provide her body with extra input. Often the tics happen when we are in a noisy environment or when a toy is quite loud. While we try to keep Lola’s world a bit quieter than most, she still has to be exposed to real life. So the tics come out and that’s OK. I know my leg starts to jitter when I’m anxious and my husbands feet seem to constantly move when we are watching a movie. We all have them, but we don’t notice them because most of the time nobody else does. Lola’s just happen to come out in a more obvious form.

Gene Testing: The one topic Dr. Zimmer contradicted Dr. Luna on was regarding if Lola’s condition was epigenetic (not passed down) or genetic. Dr. Luna felt Lola’s condition was a result of a migration disorder that simply took place in my womb. Dr. Zimmer is suspicious that Lola’s L1S1 gene mutation or deletion would have been inherited from an X chromosome. While we are not concerned with why Lola has the condition, we have decided to go through with the gene testing for a couple of different reasons. The first is we may indeed like to have another child at some point and the gene testing will help to determine if either Rob or me carry the L1S1 gene mutation. Would we have changed having Lola had we known? Absolutely not. But the gene testing will help us make an informed decision based on factual statistics. Another reason for the gene testing would be to help science learn more about Lola’s condition. Her DNA will be put into a national database that will help categorize the various degrees of her condition. I would never subject Lola to clinical research such as a medical trial, but I think a drop of blood could potentially help make sense of this condition and how it effects many lives in lots of different ways.

All in all, Rob was very pleased with the professionalism of Dr. Zimmer, but also the compassion she showed Lola. She was eager to see how Lola’s life would play out and voiced that she hoped to be a part of it. It was a relief to hear how well the appointment went and I finally feel my worried mind can rest a bit knowing Lola now has a neurologist who genuinely cares about her well-being.

My baby Mozart

Home sweet home

Lola and I gazed up at the sky and talked about the wonders of life when suddenly our mailman, a total Jerry Garcia look-a-like blurted out that we had a package. I love the man and I love getting packages, but damn did he ruin our moment.

Our interruption ended with a pleasant surprise as Lola’s Grandma Rene’ sent us a care package full of books with animated songs along with a beautiful necklace. Thank you Grandma Rene’!

Intently listening

And finally my favorite picture of Lola from the day…I swear it looks as if I caught her in the act of doing something bad!

Tomorrow we are heading to downtown Indy to walk for the son of a friend of ours in the 2012 Walk Now for Autism Speaks. If you are interested in participating in an event near you, please check out the website.

Have a great weekend!

We are SO happy for you Lola! Way to go big girl!!