Meredith Lewis: June 2010

Sunday, June 27, 2010

Vacationing at the Cape

We are happy to report, we finally are on vacation - yaaay!!!! Greg, Meredith and I are at the Cape, where we will stay through July 4th. We are so happy to be here, savoring every minute. We planned to arrive Friday night, but got a bit of a late start due to a sick baby and a minor car accident. No one was hurt, it was very minor, just a real bummer of a way to start a vacation. We were able to get in to see the pediatrician before we left to rule out ear infections or anything else serious. Meredith has been drowsy and a little sick (vomiting), but seems to be on the mend. She's still quite tired, but has not vomited since yesterday. She's snug as a bug, set up in a big girl bed with bed rails attached since she's not a big fan of the pack 'n play. She looks so tiny in there! She's still doing well on her Keppra, though she has had a few "breakthrough" seizures. Since she is sick, we wonder if the seizures she had last weekend were due to this oncoming illness (sickness can often trigger them). A mom on my support board posted a link to a video I found fascinating. Its about an advanced kind of EEG that looks more closely at brain activity resulting in a more accurate diagnosis. The test is called a "Digital EEG and Evoked Potentials Assessment" (DEEP). This doctor points out that all these brain disorders are diagnosed without ever actually looking at the brain. An MRI will give you a picture of the physical structure and an traditional EEG will measure activity in one part of the brain, but there is no standard test that goes further. She compares this to diagnosing a heart issue without ever looking at the heart - makes sense. I emailed our neuro to see if this test is available at Children's Hospital. I thought the video was really interesting, if you would like to see, here is the link :

Our other big news is that we have decided to accept the invitation from Children's Hospital for Meredith to be part of a medical study on Microcephaly. Meredith, Greg and I will each give a blood sample, then the study begins. The study has been going on for 8 years and could continue for another 10. They will only contact us if they come across new concrete findings. The study includes families from across the globe with specific interest placed upon families in the developing world. Since many of these families are larger, including many more children than a "typical" US family, the familial gene pools are greater, providing more scientific data to observe. Hopefully our contribution to the study will one day provide more information for children like Meredith.