Our journey through life with hemiplegic cerebral palsy and infantile spasms

Tuesday, July 24, 2012

Overreacting and over analyzing

Looking back, I think it's safe to say Kuper and I jumped the gun. I thought Karsen had another seizure a little bit ago, I blogged about it. I watched the video over and over again. I have been caught watching it now even. The thing with his seizures is they can be hard to spot sometimes. What may look like nothing is something. Those of you that know what Infantile Spasms are you know. So, when we hit the two week mark of our taper off the prednisone I got paranoid. If his seizures were to come back like we thought he would have had a lot more than just one that day, especially that week. We have seen zero signs of seizures. I think it's safe to say he's been seizure free for over 4 weeks. Today  marks three weeks since we started his taper. I pray they stay away and feel very hopeful they wont return. Only time will tell. Karsen is doing so good! He's got so much drive to play now. He's doing so much better at therapy. I'm still a little worried about his eye. So, his neurologist is going to refer us to a pediatric optometrist, of course in palo alto. But really I can't complain. They have been amazing there! I would drive 6 hours if I had to to insure Karsen got the best care possible. We move mountains for our children, right? Our appointment with the neuro is on the 1st of August. Hopefully we are avoiding meeting a neuro surgeon. Fingers crossed and praying hard.

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