More seizures

Unfortunately, our 12 day streak with no seizures came to an end this afternoon. Today Meredith had 4 seizures. All of them similar to her other recent seizures, about 2 minutes long each. The good thing is she was not at daycare, she was home with Greg who had taken a vacation day today. We are discouraged, but not too surprised. We emailed the Neuro and he'd like to increase her dose of Trileptal again. In the meantime, Greg and Meredith had an interesting appointment with the Geneticist today. Dr. Harris and Greg talked about the introduction of seizures and whether or not this points toward any new syndromes. The doctor came up with a list of 22 potential syndromes that fit her revised list of symptoms. Then they cross-referenced all of them with what she has already been tested for and came up with.... ZERO new syndromes to test for. She has already been tested and cleared for every single one of them. Our little girl is truly a medical mystery. In fact, the geneticist asked if we might be interested in having her take part in a medical study that the Chief Geneticist is conducting on Microcephaly (small head measurement). This doctor felt that the Microcephaly alone could explain a large part of what's happening. But as we are accustomed to now hearing, no one knows. Little is known about Microcephaly and its prognosis. Especially in Meredith's case, since it does not appear to be associated with another syndrome or illness, as it often is. Her head has continued to grow on it's own curve, but she is still extremely delayed. It's hard to accept that we may never get any answers. But I get the feeling that over time, finding that "answer" becomes less important. Having an answer really doesn't change anything about this situation. But the wondering is very difficult. It's hard to constantly wonder - why did this happen? Was it something I did when I was pregnant? Is it genetic? Was it a fluke? Were we just chosen to be Meredith's parents because she needs us? Would it happen again if we had another child? There is a lot of guilt and a lot of fear associated with not knowing. The list of what if's and why's is endless. But that is a challenge for Greg and I, not Meredith. Our parenting experience is absolutely nothing like we had imagined and it is truly unique. We will learn to adapt and over time stop wondering why, and learn to just accept and appreciate what is. Meredith is happy. She doesn't know she's different from other children. So while we still have no answers, we are feeling at peace with this whole genetic testing process. We feel obligated to go to extremes to find any scrap of information that may help her, but in the end, we are actually comforted by not having a label for her condition. As my dad so simply put, she is who she is : )