Good News

On Wednesday, Evie had her appointment with the opthamologist. Her optic nerve and retina look clear and are in tact. This was our last test looking for TSC. And nothing! Although there is still a chance some symptoms may develop over time, things are good for now and we can breathe a little.

With Thursday came an expedited spinal tap. After the good news Wednesday, Dave and I arrived at the hospital cheery and early. Everything worked like clockwork; we got a good parking space, registration was easy, we had friendly nurses, Evelyn was unusually pleasant for not feeding her for a few hours. We had an amazing nurse who by instinct was able to hit one of her tiny, invisible veins for her IV. She went out like a lamp with her anesthesia and the doctor got a very clean sample of spinal fluid. Within 20 minutes, it was over and we were returned to our deliriously happy baby wiggling on the bed with one eye open and laughing to herself. The nurse told us that older kids who used this type of anesthesia "felt really good when waking up" i.e. she was high as a kite... and it was hilarious. The nurses and our neurologist even had a good little laugh watching her. We don't have the results yet, but we did find out that she does not have diabetes. Once again, it's looking like plain, garden variety epilepsy, which is what we want. In the words of the nurse who helped with the procedure "the last thing you want is to be interesting to a doctor". We're happy here, being normal and boring.

The only thing we are worried about is that her doctor wants to change her medicine to Topamax, which might have some not so great side effects. We have an appointment with him on Tuesday and are going to be employing the BRAND (benefits, risks, alternatives, doing nothing, and decision) questioning process we learned in childbirth classes. We also are meeting with an Epileptologist at MUSC in the next few weeks to seek a second opinion on the matter.

Since it is obvious that the seizures are not effecting her development and there is a risk that this new medicine will, we are concerned that the risks of the medicine outweigh the benefits. Especially since she only has breakthrough seizures every 10 days or so and she bounces right back from them. From the little bit of research I have done, this seems to be quite typical of epilepsy.

But for today, we are happy, we had our Saturday morning coffee jam session in bed, the four of us. Aiden and Evie giggled and played. We are in awe of the bond that they are forming; the protector and the charmer. Sometimes she's the only one who doesn't get a grumpy response from him. She loves giving him kisses and patting his fluffy hair and he turns into this gentle little softy. Oh, and she said "Mama(mamamamama...)". I don't care if she didn't mean to, I'm taking it.