Our neurologist was a famous one here in the northeast named Doctor Orrin Devinsky. He came highly recommended by multiple people. We were also lucky to have met a couple named Rhiannon and Mike who were part of one of our Infantile Spasms Facebook groups. Their daughter, Daisy, also had Infantile Spasms. She had been through the neurology visits and worked with EI already. They introduced us to this program that would hopefully make a huge impact to Rhythm leading a normal life.
One of the effects of Haleigh's Hope had to do with impacted sleep. Rhythm's sleep pattern was extremely erratic, and she was still at a point where we felt like she needed to be in the bed with us. Most nights, she wouldn't get to her deep sleep until 3:00 to 4:00 AM, sometimes later. This began to play havoc on our nights and actually forced me onto the couch so that I could get enough sleep to be ready for work. But if this was the price for no seizures, it was an acceptable price.
We had our assessment appointment with EI, and they confirmed that Rhythm was significantly behind in all aspects of development and would qualify for all services. This was what we expected and we couldn't wait to get it started. EI would also be experimenting with some adaptive equipment to help Rhythm with standing. She didn't much like her first few sessions, but it was the best thing for her.
We began to notice a new development with Rhythm. It was kind of like a muscle spasm one may experience if they are near sleep and then are jolted awake. They lasted for about a second and often Rhythm would smile afterwards. We didn't think much of them, but they happened 3-5 times a day. We had grown so in love with the fact that her seizures were gone, that we didn't consider these to be seizures. They looked nothing like what she had experienced before. We were a few weeks out from her neurology appointment, so we monitored and would be prepared to discuss it.
Our first medical visit was to the eye doctor. We had a fear that Rhythm may have had significant damage to her eyesight. She still rarely maintained eye contact and the only stimulus she responded to was light. The visit went well and the eye doctor confirmed her eyes were healthy. However, he could not confirm or deny Cortical Blindness, which was neurological. That would have to wait.
The day finally arrived where we visited the neurologist. We not only met with the Epileptic Neurologist, Dr Devinsky, but a Pediatric Neurologist named Dr Joshi. The visit was a fact finding affair where they got Rhythm's history, learned about the effects of Haleigh's Hope and started to determine the best way to assess the damage and her prognosis. The method they would do this is a hospital stay with an MRI to get an image of her brain and a 48 hour monitored EEG to see her brainwave patterns. The whole picture would finally come in to focus.
What we found out at the hospital shook us up. It turns out Infantile Spasms and Epilepsy wasn't the only thing Rhythm was dealing with.
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