Rhythm at Age 5 - An Epilepsy Story Update

Hello all!  It has been over two years since my last blog post about Rhythm and her battle with Infantile Spasms Epilepsy and Petri-Ventricular Leukomalacia (PVL).  We were always told that it was going to be a long journey with Rhythm, as Infantile Spasms is one of the most insidious of the epilepsies.  Haleigh's Hope CBD Oil played a huge part in limiting and then stopping her seizures.  We are confident in saying that, as several pharmaceuticals were tried on Rhythm, and none of them stopped the seizures.  Only when we introduced Haleigh's Hope did they stop.  We know this does not work for all cases, but it worked for us.

Back in December 2017 and our last update, Rhythm's brainwaves did not show any abnormalities.  For us, that meant that she was truly seizure free.  Here are some amazing successes and continued challenges we have with Rhythm's development, 2 years on:

SUCCESSES
1) Rhythm started school!  Our school system picks her up at our house in a special stroller the school provided.

At first, Rhythm did not like the bus.  Especially her first year.  But she grew to love school this year.









2) Rhythm is eating some things on her own

And she has a sister!  Her sister, Lyric, has inspired Rhythm to do certain things as she learns them.






3) Rhythm is starting to say some words.  Sometimes it is words that she repeats from others.  But sometimes it sounds like she is joining a conversation.  Her two most common words are "Yeah" and "Okay".

4) Rhythm absolutely loves music.  How fitting with that name!


CHALLENGES
1) Rhythm is still building up strength to sit up, but isn't there yet.  As she gains weight, her mobility is something that we hope to see a huge improvement in and will continue seeking out therapies and tools to help.  PVL leads to Cerebral Palsy, which Rhythm does show symptoms of.  But we know there are varying degrees of Cerebral Palsy, and we are unsure of the extent that it will impact Rhythm as she gets older.

2) Rhythm is still not making direct eye contact.  We know that her eyes are healthy, but there is a level of cortical blindness.  That being said, she reacts to stimuli (sudden light for example) and does react to certain colors, on screen images and we do catch her focusing on things.

3) She is still prone to serious tantrums when she doesn't get something she wants or is experiencing something like gas pain, made more challenging with her being non verbal.  But those are becoming rarer, and she is generally a very happy girl.

As Rhythm prepares to turn 5 next month, we are very proud of her progress, development and how well she has taken to going to school.  We appreciate the kids in her class who love her and go out of their way to be her friend and protect her.  She loves her classmates.  We can tell by her reactions recently when we had video calls with her class!

Rhythm's story continues.  The last two years have been very positive.  We hope and pray that it continues!