Perspective...

Michael mentioned he had a dizzy spell again last night. Waiting to hear from the doctor. Although with our friend's son in a medical induced coma to stop his seizures via burst suppression, dizzy spells don't seem so bad. My heart breaks for them. I don't know what I would do if that were my son lying there. Prayers to Aidan, Karen and Ben.

Med Wean-Keppra

The med wean (keppra) continues to go well...keep your fingers crossed!! Will have another 5-6 months of weaning for this and then we move on to wean his other meds.

Learned today that one of the kids Micahel met at Children's hospital is not doing well. The Dr's are going to place him in a med induced comma to see if that helps with his sz's...hang in there Aidan! You are in our thoughts and prayers.

Stay the Course & Roll the Dice

Michael has no school on Friday-so we're off to the Dr's to get an update. We're going to continue with the med wean process...as of today-we have been dropping his meds since January. Dizzy spells seem to be the only issue-we'll take it for now!!! You miss 100% of the chances you do not take...

The Beast

So Michael's form of Epilepsy is called "the beast." There are days when you think you've beaten it and then it happens again out of nowhere. Went to baseball practice with him the other day and he told me his his "mind was spinning." I asked he what he meant & it turns out he gets dizzy spells. Have no idea what causes these-could be from the med wean-but just another thing to think about as this process has continued for almost 2 years. It drains you in every aspect and everyday is a fight...fight on!

February '09-Neuropsych at DCH

This day would be at the top of my "lowest moments" list.
We were scheduled for a Neuropsych to begin initiating Michael's IEP for school and to gage his neurocognitive functioning and to assist with clinical management. With all the seizures he was having, this particular day was horrible. It was an 8 hour test with 2 15 min breaks and a 45 min. lunch. I had my 9 month old baby in tow waiting outside for Michael to be put through a mirage of testing by the hospital's psychologist.
He was having so many seizures that day, they weren't even sure if he would be able to finish. He was hallucinating and saying words and colors that weren't even there. Having drops and absence left and right.
The final outcome was heartbreaking. He went from grade level back to kindergarten level. We rec'd an 8 page heartbreaking report. Weaknesses were noted: Verbal memory was far below average, expressive language skills, including naming and verbal formulation as well as attention and executive functioning skills, including working memory, response inhibition, self-monitoring and planning/organization. Verbal memory was also far below average. "These findings are likely related to Michael's medical history. Children with epilepsy are at greater risk for cognitive problems."

My little boy was slipping out of my fingers...I felt so helpless, how was I going to save my son?

Dr's Appt Today

Jenee took Michael to the Dr's today. Pretty basic appt...however they wanted to know why weren't following the medication wean that they had suggested. It was just that, a suggestion. Everytime we make any changes to his diet / meds...we're always sitting on the edge of our seats, watching and waiting. Epilepsy is not an exact science...all we can do is get out of bed like we did the day before & go get it done.

Cool News-Michael has joined chess club and has picked up the game quickly. I love playing with him.

Thanks everyone for your kindness...it goes a long way.