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 ever growing need for vision services for children became present. Their current class occupancy is roughly 150 students and the children’s age ranges from 3 – 22 years. Some students live on site while others come in anywhere from once a week to five days a week. I was ecstatic to learn about how small the classroom sizes were as I am passionate about Lola not getting lost in the cracks. We toured mostly preschool classrooms where we sat in on one particular group of students that were not only visually impaired, but also developmentally delayed. I made friends with a little girl named Shanna (name has been changed). She was severely autistic and struggled socially, but we seemed to have formed a connection. I was told she rarely communicates let alone answers questions and I couldn’t help but feel just as drawn to her as she was to me. That tiny connection and seeing the excitement in the teachers made me feel that Lola would never be lost in the cracks here. I felt that it was a place she could truly thrive and not be judged based on her disability. It would be a place where she would be pushed to reach her greatest potential, not as a child with a vision impairment, but simply as a child. I loved the place. I can’t stress that enough…I loved the place.
She will be evaluated by the public school system when she is just under three years old. After that case meeting, we will meet with the ISBVI committee to determine if she would be eligible to attend the school. Seeing that Lola’s vision impairment (while it can certainly improve) is permanent, she was often introduced as a “future student”. She’ll not only learn how to maneuver through life with a vision impairment, but she will also get to do fun stuff like music, art, computer and aquatic class. They have an in-house occupational therapist who helps the children accomplish daily tasks in a safe and beneficial way. If Lola stays at the ISBVI until she is in high school, they will incorporate her into North Central High School and the J. Everett Light Career Center. Everything about the tour, the people, the children, the resources, everything simply felt right. I left the ISBVI not sad, but invigorated and relieved that I found a place where my daughter can truly thrive as an individual. She still has a couple of years before she can attend, but they are already reaching out to us in an effort to introduce people that can help us understand how to create a home environment that best suits Lola’s vision impairment.
Later that day, Lola had her first U.S. neurology appointment with Dr. Hema Patel at Riley Children’s Hospital. I’ve been struggling all day trying to think of the best approach to write this as I don’t want my emotions and personal opinion to take over the facts regarding Lola’s appointment. It began with Dr. Patel asking many questions about my pregnancy, Lola’s birth and thereafter. We outlined when the seizures began, what medical tests were performed, what the diagnosis was, what medication she is on and where Lola is at as far as developmentally. Dr. Patel had a no nonsense approach and began to tell us her opinion regarding Lola. To start, she wanted to have the MRI read by a pediatric radiologist as she is not convinced Lola has lissencephaly. From her quick view of the MRI, she felt it should be classified as pachygyria which is something Dr. Luna (her neuro in Costa Rica) also mentioned, but he still believed that Lola’s brain was smooth at least in the occipital lobe. Pachygyria is a cell migrational disorder, but the brain still has few to little gyri or folds which it would be lacking if she did indeed have lissencephaly (smooth brain). Dr. Patel thought the pachygyria took place in other parts of Lola’s brain, but wanted the results from the radiologist before she jumped to conclusions. You can ask me what this means, but at this point I simply don’t know. We will just have to wait to see the results and then hopefully we can get more answers from Dr. Patel.
Next she went on to talk to us about Lola’s epilepsy. She was surprised Dr. Luna prescribed Trileptal as she said it would never be an option they would use at Riley. I remember Dr. Luna specifically prescribed Trileptal because he felt it was a mild anti-seizure medication with little to no side effects. He did not want to prescribe Sabril (what most U.S. neuros prescribe) as the drug can cause permanent eye damage. He felt that Lola’s eyesight was already damaged enough and didn’t want to take that chance. But Dr. Patel stated that if Lola was to have seizures (generalized or focal), Trileptal can magnify them making them much worse. Dr. Patel did not want to rock the boat so she is keeping Lola on the Trileptal although we will not up her dose as she grows. It will be a slow wean off of the drug, but if Lola does start to have seizures, than Dr. Patel will most likely change the medication. I feel that the two doctors come from very different backgrounds and are both entitled to their own opinions.
Lola is scheduled to have another EEG on February 10th to make sure she is not having any seizure activity. If she is than she will most likely be admitted to the hospital for a 24 hour video EEG. We are to keep an eye out for strange actions such as eye fluttering accompanied with spaciness. Seizures come in many different forms and we were warned that most kids with infantile spasms end up having a general form of epilepsy (sometimes difficult to control). Dr. Patel also ordered routine blood work in which my kid took it like a champ. She barely whimpered when the needle went into her tiny vein and she smiled when she received a toy afterward for being such a good babe. We were told the doctor would only call if something alarming showed up in the blood work. So for now we wait to see what the radiologist has to say and we wait for the EEG. We were told there is a team of geneticists coming to Riley in August and if we are willing, than they would like to perform a gene test on Lola. As long as it is a little blood draw and if it can possibly help someone else, than Lola will indeed take part.
I wish I could tell you what the entire appointment means for Lola, but the truth is…I walked out of that appointment even more confused than I was before. Words are words, a diagnosis is a diagnosis, but when you have been lead to believe your child has one thing and suddenly it is being questioned…well, it’s alarming. I’m glad Dr. Patel is being thorough, but in all honesty, I was not a fan of her bedside manner. I don’t need someone to sugar coat things for me, but sometimes I think these doctors (Dr. Luna included) forget they are talking about a child’s brain. I know they see a lot of patients and probably most are much worse off than Lola, but that does not change the fact that I as a mother want the best for my child. I understand their emotions are based on science, but as mothers…as vulnerable mothers, our emotions are based on the sheer fact that we want to give our kids the best chance at the best life. And for me personally, I do better when I know what I’m up against. Now I don’t want someone to sit there and stroke my hair telling me all will be OK, but I do want someone that shows a bit of compassion for a child that did not choose this disability. OK here I go – I said I wouldn’t be emotional, but fucking a I am passionate about the care of my daughter. Perhaps it will take some time with Dr. Patel therefore I’m not throwing in the towel just yet. I’m interested to see how she communicates with us regarding Lola’s MRI and EEG results and if for some reason she’s not up to par…well than we will simply move on to a different doctor.
[quote style=”1″]Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.[/quote] – Elizabeth Stone