Quiet Times

Not much has been happening over the past few weeks, thus the break in posts. Mira is still seizure free, going on almost 4 months! We did have Mira's neurology appointment on Monday, which lasted about 2 1/2 hours. Her final results on the Rett's testing, for the typical MECP2 type, came back negative. After much discussion, we decided to do some further genetic testing, for Dravet's Syndrome. The decision was based on Mira's poor reaction to Lamictal and Diamox last year, both of which act in a specific way in the body, through sodium channels. Her adverse reaction to particular medications is sometimes a clue.

Dravet's, also referred to SMEI (Severe Myoclonic Epilepsy in Infancy) is usually attributed to a specific gene, referred to as SCN1A (and also SCN2A). Mira will be tested for this, but as with all of the other genetic scenarios that she has been tested for, it is unlikely that she has it.

Weekend Events

Aura, Addy, + Truman came into town for Eli's 'Batman Bowling Party Extravagganza Weekend'. (Eli turns 5 on Wednesday!) The festivities continued into Sunday when I took the boys to Monster Jam at the recently completed Sprint Center. Having never attended any sort of racing, car, truck, or motorcycle show, it was an eye-opening (and ear-ringing) experience to say the least. Eli and Addy were reved up for most of the show, but after 90 minutes of trucks, dirt, and noise, they were both pretty much spent. I'm not sure how anyone could possibly fall asleep during Monster Jam, but Addy managed to.

All things considered, it has been a quiet week for Mira. I plan on talking to neurology toward the end of the week so that we can make sure we have the remaining Rett's results for her appointment at the end of the month.

Three Months Seizure Free

Saturday marked three full months of Mira being seizure free! She continues to do well, although her eating is still not up to par and hasn't been for quite some time. She tends to eat in waves, scarfing down yogurt and eating full meals for a few days, then won't eat a bite for a the next two days. We can't quite figure it out why she does this, but she is still getting plenty of fluids every day. Despite her mealtime issues, she is doing very well these days and continues to be very vocal and animated.

It was in the mid-60's this afternoon so everyone (well, almost everyone) was able to get out and enjoy the weather here. Sarah took the kids to the park and Eli was able to burn off some energy. Poor daddy was stuck inside all day and had to sit through boring meetings and talk to other nerd architects about exhibition hall rigging capacities imposed on structural mainframes.