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My son’s Journey ~ Palm Desert, CA

June 2, 2011

We have now been home almost a week from the hospital with Sam.  What a week!  We are so glad to be home again and getting back to “normal.”  Well, normal with restrictions.  The final results were he does still have Focal Epilepsy, his seizure activity is still mainly in his left frontal lobe and slightly in the right frontal lobe, his seizure activity has increased significantly during the day and is slightly less at night, and his medication was too low.  So we not only came home with an increase in medicine, but a few restrictions, which include someone being with him when he rides his bike, someone in the water with him when in the pool, no more playing or P.E. outside when it is over 90°, and needs to get plenty of rest.  As a parent, it is scary to know your child could have a seizure at any time, not knowing how bad it will be, and being worried about what puberty might do to change his seizures.  Yes he has had the epilepsy diagnosis for 4 years, but I am more scared now than ever before because his main activity is during the day now.  His risks have changed.  :/  Now we take things one day at a time and watch him closely, but not so closely that he realizes we are watching him.  We want him to still be able to feel like a typical 12 year old boy.  So far Sam is doing good, although he does get really tired come afternoon.  It is all an adjustment and will take time.

Thank you to everyone for all your thoughts and prayers.  Below are some images from our adventure.  For the photography buffs out there, these are straight out of my PhD (“push here dummy” camera Lol!).

~ Ann


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