Support

A definition of support in Miriam Webster is to endure bravely or quietly.  This is what we’ve been doing since our last blog post, supporting each other (or as Jack would say, theirchother) as a family. I now feel that we need to again share where we are at in our journey.  We’ve been going at the speed of light, enjoying and soaking in the good days/moments and wading through the tough times. 

We left Boston in January with hope in a bottle called Ethosuxamide and a metabolic team who would surely have the answers.  Jack is not a candidate for any type of brain surgery for his epilepsy due to his seizures being generalized, or occurring all over his brain without a focal point or side.  In addition, there is likely an underlying cause for his seizures and surgery would not cure him anyway.  The wonderful team in Boston rediagnosed his main seizure type as atypical myoclonic absence seizures.  Seizing approximately 6 times an hour without us even noticing, causing Jack to be antisocial, scared and withdrawn.  Also causing learning delays, physical and emotional damage... again I say we had no idea what the monster Epilepsy really was. 

A new medicine is where we find hope and were able to enjoy a glimpse of a boy we once knew.  For a month people, even ones we only know in passing, were commenting on how happy Jack was. How they haven’t seen him smile in forever, how amazing his smile is with those double dimples.  He didn’t cry going into school, he got his confidence back; he got his smile back and got his first EEG without ANY seizures!

Unfortunately this was short lived.  The story of Jack is that of a roller coaster ride.  Great days of laughter and swimming and days of throwing up and seizures.  So we put one foot in front of the other and continue to search for answers.  In April, Jack had a very traumatic spinal tap which showed abnormalities that we are still trying to piece together. Out of this has come one new diagnosis cerebral folate deficiency and yet another medication, topping us out at 12 medications, a lot of them given at least 4 times a day.

We will be traveling to Boston in August as a family for follow up appointments and some much needed family downtime.  Until then, we are counting down the days until school is out and we can swim and play and laugh and smile.  And what happens in between those moments we will get through until the next smile.

Jeremiah 29:11, For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.