Today we went in to see the results of Kamiree's EEG from 2 weeks ago. We are pretty used to just hearing, "looks better see ya in 6 months," but that wasn't to be the story today. Her abnormal EEG is up to 39% which is up from 27% in November. While this might not see like a lot, it essentially means that her brain is having abnormal waves 12% more than it was in November. I didn't expect it, but honestly I am to the point that it takes a lot to make me cry and push me down. Kamiree is still improving with her speech and communication skills, and yet medically she is not getting better!!! I'm more frustrated that the answer is, "I don't know," to what's going on with her. I don't expect every neurologist to know everything, because the brain is insanely big, but I hate hearing they don't know what's wrong with our precious daughter.
After the, "I don't know," it's always that they have read this study and that study and really there is no new information on why some kids have abnormal EEG's and function normally and why some kids have abnormal EEG's and struggle with academics, speech, act… I want to know why! I want to know why Kamiree has to struggle and what the root is. Thankfully, our neurologist seems to be curious as well so we are basically starting all over. We are starting with an MRI, pending approval from the insurance, and then going to a neuropsychologist, then genetic testing. We want to know, but in reality it won't change anything except we know. If you saw Kamiree walking down the street there is no way you could pick up that she might have some special needs. Unless she was screaming, and in that case people usually like to stare, or glare, whatever seems to be their view on our parenting.
Although this might be a setback, it's not for God, nor has any of these "issues" ever been for Him. I do think that God gave us medicine so that we find out and treat the underlying problems. Although I also know if He wanted to heal her right now He could. The focus is still the same, get Kamiree to where Kamiree is meant to be. But this does not mean that we won't give her the best education we can find for her, which I feel we have found for her at RMDS, and continue pushing her on a daily basis to speech therapy and any other kind of therapy we feel might help her. She is a blessing. I can't imagine life without our blessing. Today was a hard day but we rejoice in the fact she is healthy and that anything they throw at us, God already knew and is there to comfort us.
Kamiree: The struggles and triumphs living with Landau-Kleffner Syndrome
