Wednesday, April 28, 2010

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 : )

Wednesday, April 7, 2010

Visit from Uncle John

Last weekend was one we had been looking forward to for quite some time because Uncle John was in town from San Francisco! It was so nice to have him home. We had lots of fun hanging out and we got to meet John's girlfriend Jackie and her son Graham. We quickly fell in love with them both and made sure the kids got in lots of quality time. Graham is absolutely adorable and I can't wait to see him again. His interest in feet and Meredith's interest in hands helped them hit it off right away : ) There was beautiful weather all weekend and after a brunch at our place on Easter Sunday, we went to the park and played with the kids for a while until it was time to send John, Jackie and Graham off... A great weekend.

This week we also made progress on the stander front. We were able to get our hands on a loaner stander which we will leave at daycare and we will still move forward with purchasing one that we can use at home. This way we won't need to transport it back and forth. Grandpa was nice enough to swing by the Early Intervention office on Monday and pick up the loaner and deliver it to our house. We learned today while trying to position her in it, that it's a tiny bit big for her. But in a couple months and another inch or so, she should be fine - so we'll definitely be hanging onto the loaner anyways! We had an appointment this morning with a guy from a medical supply company who showed us several great options for supine standers. Next step is an appointment with someone who can actually show us one of these specific models and make sure it would work for Meredith. Our PT is so optimistic about getting Meredith in the standing position saying it is beneficial for a variety of developmental reasons: improved sociability, muscle tone, bone density, joint developments, deepening hip sockets, and even helping with digestion. All good stuff! Meredith had a really sleepy day today, which was fine since she had a couple MAJORLY choppy sleeps the last 2 nights. Little munchkin took a short snooze from 9am-4pm. What?! When I picked her up from daycare tonight, they said she just woke up. Little Rip Van Winkle slept right through the nicest day of the year - it was 86° today!