It has been an incredibly long two week journey. We thought dystonia would be the diagnosis, but after seeing a few specialists they believe Waverly is having seizures. They are both terrible diagnoses, but more is known about seizures so I see it as the lesser of two evils.

We started her on a seizure medication this morning. The side effects are moodiness, aggression or drowsiness. I am keeping a close eye on her today and for the next few days as we wait to see if this particular medication is a good fit. I have been warned that there is a lot of trial and error with these meds. Hopefully we can find the best option quickly with minimal side effects.

I have to admit to being utterly exhausted throughout this ordeal. Each new phase is painful, but I have been dreading the start of seizures. Wavey has not been herself and I hope to see the twinkle come back soon. I miss her.


Mike and Sarah said…
Shannon... I'm sorry you are beginning a new phase. I can't imagine the balance of living in fear of the next stage and making the most of your current stage. On the outside, you seem to balance it well. Praying these new Meds do the trick.
carolyn said…
I am so sorry that you and your beautiful children have to go through all of this heartache. I have such admiration, particularly for you, and your husband.
Sending you healing thoughts daily.
lesley said…
So sorry to hear that they have begun. I hope its a quick process to stabilize her. Always a fine line between 'good enough' seizure control and the side effects. Quality of life. I hope you see that sparkle soon.

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