Wednesday, November 19, 2008
Emily has been doing very well. She is continuing to make progress with her physical skills. She is tolerating more tummy time and lifting her head up while she's there. Her head control and trunk control are improving when practicing sitting, and she's been having alert/"playtime" consistently between 1pm and 11pm almost everyday. She is sucking on her fingers and hands more, and will even tolerate my finger, a wash cloth, or an oral swab in her mouth sometimes. Her spasms are happening regularly once or twice a day, which is very good for her. The doctors' next recommendation is to start the ketogenic diet, which for Emily would be a ketogenic formula through her gtube. It requires parent classes (I took the first one already) and a 5 day hospital admission to formally start. And with Emily's low blood sugar issues and high calcium issues, she will be watched even more carefully. The doctors seem to suggest that the keto diet has the best chance of working for her. Where anti seizure medications are only 20-30% effective, this diet is said to have a 60% chance. So I am hopeful, though not so optimistic. The percentages given during class were more like 13% of children in the study with IS became seizure free. 13%? Anything is worth a shot at this point. So we are getting our homework ready and hope to get Emily admitted to start in January.
Here she is sleeping so peacefully on her belly!