Ethan’s Story

Site created on July 25, 2022

Hello friends and family! 


We decided to create this Caringbridge site to let everyone know that Ethan has been diagnosed with Epilepsy; the specific type has yet to be determined.  However, his symptoms resemble Juvenile Myoclonic Epilepsy. We are in the initial testing and information gathering phase.  Please know that there isn’t anything that we need or that anyone can do for us or Ethan but we are asking for a little grace and patience as we navigate Ethan’s “new normal”.  There will be activities or party invitations that he (we) might not be able to attend but please continue to include him!  Also know that you can ask us questions!  We may or may not have answers as we have a steep learning curve ahead of us.


Thank you in advance for your support and concern for our son!  It means so much to us!

Newest Update

Journal entry by Bridget Block

Hello everyone,

Thank you so much for your kind words, thoughts and prayers!  They are working and we would truly appreciate it if you would keep them coming!

Ethan had been seizure free since starting his medication July 1st.  However, with the start of school and football, he had one minor seizure upon waking Aug. 31st and another Thursday morning.  This is very concerning as they are called breakthrough seizures and we needed to talk with his specialist.

His first EEG on July 6th was inconclusive, so his doctor scheduled a Video EEG for September 6th requiring an overnight stay at Gillette Children's Hospital.  Unfortunately, that set of data was also inconclusive and we had to stay an additional night.

The morning consultation shared encouraging information.  After two days of sleep-deprived conditions which should have triggered his type of seizure activity, Ethan's EEG data showed NO significant seizure activity.   In summary, NO data is really good news!!!  It means there isn't any underlying seizure activity especially while he is sleeping because the meds are working!  Because of the minor seizures last week, it was decided to increase his medication dosage to help protect him at school and sports.

We missed Jonny terribly and are looking forward to a good night's sleep in our own beds!  Because our very caring friends grabbed Ethan a football jersey, he will plan on dressing for tonight's 8th grade football game but not playing. He's SO excited to be with friends and away from his Mom!

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