Wednesday, July 28, 2010


I have been stressed about time. When will Jacob's case be presented at Children's Hospital Boston? When will he be scheduled for surgery? How long will his recovery and rehabilitation take? How old will he be when this actually happens? And then I was thinking that maybe this is all for the best because the neurosurgeon discussed the honeymoon period where a drug seems to work and then gradually becomes ineffective. Jacob has done well since he was switched to Depakote a few months ago. But it took several increases in his dosage and now he is taking 7 ml twice a day. The maximum for his weight is 8 ml twice a day so we still have some room to adjust if necessary.... I have been seeing some strange eye movements again. Some rolling, some shifting. I am feeling like I've been here before because I have. And the last time it took over a month before we confirmed that he was having seizures again which led to the recommendation for neurosurgery. This surgery is not common. It is a life changing decision. So maybe we are meant to wait to see Jacob's seizures again to reaffirm that he needs this surgery so that we have no regrets or second thoughts. So we know we have done what is best for Jacob. So we wait together and I will not post about this again until it is time.

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