An Image Changes Everything

“When you’re in your own realm, you have a strong sense of purpose, but there’s something about foreign territory that makes you want to loaf.”

This was my Leo horoscope on May 25th, 2012…one day after Dr. Zimmer called with Lola’s MRI results.

Are you ready for good, but shocking news?

Lola does not have lissencephaly.

Yes, you are reading this correctly.

Lola does NOT have lissencephaly.

Not only does Lola not have lissencephaly, but she doesn’t have pachygyria either. In fact, other than a slight abnormality in Lola’s white matter (a bit decreased), Lola’s brain actually looks quite normal.

I hesitated to write because we had to process this new information. We had to give it time to sink in as for the last eight months we have thought Lola had both lissencephaly and pachygyria. While the news was hard to hear in the beginning, we felt somewhat lucky to at least have a diagnosis. This gave us a reason as to why Lola was delayed, why she had the seizures and why she had such a hard time with her vision. But now that has all changed. We are back to square one. We are thrilled she doesn’t have lissencephaly yet at the same time it feels almost bittersweet. The unknown can be scary. For me, the unknown is almost worse. Dr. Zimmer kept repeating, “This is good news.” Lissencephaly would limit Lola, but Lola had already surpassed many milestones which led Dr. Zimmer to question that diagnosis in the first place. And thank God she did.

It has been a lot to take in. When I told Rob, immediately after hanging up with Dr. Zimmer, even he look dumbfounded and my husband rarely is left speechless. We keep shaking our heads in disbelief, but it’s true. Even though I wrote down Dr. Zimmer’s exact words “Lola does not have lissencephaly” I still go back to reread it. But now we start from the beginning as there must be an underlying cause as to why Lola is delayed. Dr. Zimmer has already put out an order for blood work and Lola’s urine to be analyzed. She is looking into metabolic disorders first and if nothing is found than she will order genetic testing. And as for Lola’s vision…well Dr. Zimmer says there is nothing on the MRI that would lead her to believe Lola has any type of neurological vision impairment. Oddly enough, Lola is going to yet another ophthalmologist in hopes to find if something is wrong with Lola’s eyes. Could it be the child simply needs glasses? What a damn miracle it would be if that’s the case! Dr. Zimmer said it’s clearly obvious Lola has a vision impairment, but the question is why? So the most logical answer would be something within the actual eye which is why she wants a Riley ophthalmologist to take a closer look.

Unfortunately, it may be many months before we have an idea as to what is going on with Lola. The urine analysis can take 2 – 3 months before we have results and if Lola needs genetic testing that takes even longer. What we know now is that Lola continues to improve each and every day. Her eyesight is getting sharper, she is very curious about the world and she is just the happiest little thing. I’m happy she doesn’t have lissencephaly, but I would be lying if I said I wasn’t scared. With lissencephaly, I knew the diagnosis wouldn’t change because that would have been just the way her brain formed. Yet now there is a possibility (even if slim) that Lola could have an actual illness. Dr. Zimmer emphasized that Lola is thriving, improving and not regressing which are all positive signs. I asked her if she would be scared if it was her own child and she said “no”. So I’m trusting her even though I know she can’t guarantee anything, but I’m also trusting my gut that Lola is OK. That no matter what, she’ll be OK.

Rob and I want to make it a point to say we do not feel Dr. Luna made the lissencephaly diagnosis out of desperation for an answer. I think based on the MRI technology in Costa Rica, he genuinely thought Lola had lissencephaly. But the MRI machine was a bit older and clearly the pictures weren’t as reliable as he thought. Sure we feel a bit confused, but at the same time, I’m appreciative to have had Dr. Luna treat Lola. He diagnosed the Infantile Spasms in one look and did not hesitate to get her treatment started. He was good to us and he was good to our daughter. But at the same time I must admit, I’m glad we are back in Indy. I’m even more grateful that I trusted my gut and found Lola another neurologist. Dr. Zimmer has been amazing. She asked us to come into her office this morning simply so she could answer all of our questions. Lola’s eye appointment was scheduled for next month, but Dr. Zimmer made some calls and now Lola is going in on Monday. We are blessed to have such a caring individual who is digging deep to try and figure out what is going on with our daughter. I can’t say enough good things about Dr. Zimmer.

Finally, while we know it wasn’t our fault we blogged about Lola’s lissencephaly diagnosis, we feel as if we owe some readers an apology. For months, they have watched Lola’s journey and have often written in asking for answers and now I feel as if we falsely led them. I feel genuinely bad. Perhaps my other hesitancy in writing was because I felt as if I was letting other parents down. I didn’t know what to say. I suppose I still don’t other than please continue to have hope. Right now we are unsure as to whether or not the new diagnosis will be good or bad, but regardless, we won’t stop having hope. We won’t stop pushing our daughter to reach the impossible because to us, anything is possible for her. She may or may not come out of this delayed – period – but no diagnosis will define her…no matter what it is. She is still the bright, beautiful, smart, funny and ridiculously charming little girl she was before only now she is without a lissencephaly diagnosis. It’s simply crazy.