Blog Overview


Byron Pratt, age 10, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Sunday, April 5, 2015

Epilepsy

On Wednesday I received a call from Byron's Neurologist.    Byron has epilepsy.  Of all the diagnosis(plural?)  this one hit me especially hard.  When she said seizure activity, frontal and temporal lobe, medications twice a day I felt like I was sinking.  I actually had to mentally will myself to rise up again from this sinking, sinking.  And I did.  I rose up and listened attentively, asked all the necessary questions, and here we go - again.

I was actually at my mother-in-law's house in Florida when I got the news.  I lost my own mother several years ago.  Of all the times one needs a mom, it's when bad news comes by phone.  I was  very glad I was with my husband's Mom, a great Mom.  I was very pleased with her empathy and her listening.

And what of Bryon?  It's strange to speak of my own grief about this when it's his diagnosis.  Byron let me know that as long as he doesn't have to go back to "that hospital" he's fine. And off he goes - happy once again.  These catastrophic (to me)  things are of little import to a happy 8 year old.

Just as a side note - the bill came for the last hospital visit.

Helicopter - $54,000
Hospital - $35,670
Ambulance  - $8,700
Doctors - $9,000 +

We are so blessed to have excellent insurance with no co-pays due to Byron's supplemental medicaid.  I send blessings to all the families of sick children who are not as fortunate as our family.  To add catastrophic bills on to everything else a family with a sick child has to handle -  would be just too much to bear.
Byron and the Easter Eve full moon rise