Our adventure into raising a child with Hydrocephalus. All the highs, lows and tired ramblings of a mom watching her child fight an incurable brain condition.
Tuesday, February 14, 2012
The best Valentines day present EVER!!
TWO yep count them TWO WEEKS with NO severe headaches. Can we throw a party?? I have cried realizing that finally my baby girl has a chance to be a kid again. No more dealing with grown up pain, no more constant severe headaches. She is doing so great. We had a battle with the stomach flu to scare me along the way but she even trucked through that. She is going full force from morning until night. She is also doing things she has never done before, things she used to struggle with are all of a sudden clicking for her. It is so amazing. I honestly can't remember the last time she has went two whole weeks without a headache, it's been at least two years. I can't believe that it appears the shunt was the main problem. All those doctors that kept telling me it wasn't her shunt were way wrong. I would love to show them Katana now. Maybe it would open their closed minds. Maybe just maybe they would realize that just because a shunt is pulling off fluid doesn't mean it is working for that patient. They didn't want to touch Katana because her shunt was pulling off fluid, but they never once stopped to think about the affect it was having on Katana. Thank God for Dr. Igbase, and his willingness to listen to us and to do what was best for Katana no matter what that meant. If he hadn't done the surgery God only knows what would have happened with her distal tubing (tubing running from her neck to abdominal cavity) being calcified. I can honestly say I followed my gut that something wasn't right and it lead me to a doctor who cared enough to make things right. I thank God I never quit looking for answers. I am glad I never listened to those who thought I should have just believed the other doctors. Yes it took us getting a third opinion but after it was all said and done it was worth every second I spent fighting with doctors. It was worth every phone call I made, every doctors appointment we went to and every fight I got into. In the end I found someone who listened to us and believed in what we were dealing with. Low pressure headache (which is what Katana had) are hard to diagnosis but it is even harder when the doctors don't listen. But all that matters now is that her new neurosurgeon does listen and he did what we all felt was the best thing for Katana. He gave me my little girl back.
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