Rhythm, the Book Star

I am a Children's book author, with 5 books now available on Amazon.  The stars of my books are my children, and I can't think of any other thing that would inspire me more than them.

On August 15th, 2017, my second book starring Rhythm will be released called Rhythm's Fantastic Friends! and it is dedicated to people that have and are making a difference in Rhythm's life.

I wrote my first book starring Rhythm back in 2016 prior to her Infantile Spasms diagnosis.  The book, The World of Rhythm, imagined her as a 4 year old little girl who knew how to play a lot of musical instruments.  It was a simple book to teach children about the different types of instruments and the sounds they made, which they could hear on my website.






We had none of that stress of Epilepsy concerning us as we thought of Rhythm's development as she grew up.  We expected her to be like any other little kid and do all the things that kids her age do. Not long after the book's release, she received her diagnosis, and my blog posts now are telling that true to life story, which stood to contradict those things we imagined for her in The World of Rhythm.

As I approached writing Rhythm's Fantastic Friends!, the book became influenced in certain ways by her Epilepsy.  I had to make that choice of continuing to think positively and imagine her as a normal child and doing things that normal children do, or do I make it all about her Epilepsy?

I decided to blend it.  Rhythm's Fantastic Friends! spotlights people in various occupations that are a part of a child's life, sometimes big, sometimes small.  Examples I included were School Bus Drivers, Librarians, Optometrists, Policemen, Firemen and Teachers.  However, there were a few occupations I chose that relate to Rhythm's condition.

Therapist - an important part of Rhythm's life in particular, as she is receiving Physical and Occupational Therapy to help her learn to crawl, sit, walk and play.



Doctor - illustrated to show Dr Orrin Devinsky, her real life neurologist.



Pastor - an occupation in both the Philippines and The United States that have been very active in praying for Rhythm's healing from Epilepsy.

I want Rhythm to be an inspiration to children and parents who face difficulties in early life and face unfair obstacles to a happy and healthy childhood.  I will always imagine Rhythm doing the things that she does in her books.  However, maybe in her next book, I will deal with her Epilepsy head on, and create something that children all over the world with Epilepsy and their parents can have something that deals with it in realistic terms, but provides unwavering hope.

Rhythm's books are available on Amazon sites worldwide, and all of the links to those Amazon sites are available on my website - www.patrickadamsbooks.com.

Thank you for following Rhythm's story.

NEXT BLOG POST: WE STOP THE SEIZURES!

Assessing the Damage

The initial joy of seeing those terrible seizures vanish now made way for something that was almost equally as worrisome.  How far had that year worth of Infantile Spasm related seizures set Rhythm back in terms of development and what impact had it had on her brain.  We began lining up medical appointments with neurologists, an eye doctor and with a special organization called New Jersey Early Intervention (EI).  EI would be able to provide various therapies for Rhythm such as Physical Therapy, Occupational Therapy, Feeding Therapy, Speech Therapy and a few others.

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.

NEXT BLOG TOPIC: PUZZLE PIECES