Many of you know Juan was born with 2 rare conditons. Cloves syndrome which has cause the enlarged limbs and masses on his body. He was also born with left hemimegalencephaly which is an over growth of the left side of his brain . Hemimegalencephaly caused Juan to start having seizures on Christmas day in 2015. After going to a neurologist and him failing 3 seizure medications most kids that have hemimegalencephaly are drug resistant. We knew that him having a left hemispherectomy was his only other option of seizure freedom. So on June 21st he under went his left hemispherectomy where disconnected part of his left side 9f his brain. It was a rough 2 weeks till we were able to leave. Unfortunately in October 2016 Juan's seizures returned and in November 2016 he under went his revision surgery. Since November 28th 2016 Juan has been seizure free. Currently Juan has Physical therapy, Occupational therapy, and feeding therapy twice a week. After his hemispherectomy Juan lost most of his movement on his right side. There is a new technology out that is a wearable device that will help his muscle movements on his affective side. It's such a new device insurances aren't covering it. It's location is in Ann Arbor Michigan so I would be able to stay with family while we are there. So many kids have seen such great improvement in their kids that have gotten the wearable therapy already. So if you able to help or even share it would be greatly appreciated.
Here's already link for the device. http://axiobionics.com/pediatric-rehab/http://axiobionics.com/pediatric-rehab/