Adventures in Houston and Home Again

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We recently came back for our (hopefully) last trip to Texas Children's Hospital. We met with both Dr. Curry and Dr. Wilfong. They think that the hamartoma (tumor) taught other parts of the brain to seize so now what is left of the hamartoma is not causing any problems, it already did the damage that continues to cause Eli to have seizures. Secondary epileptogenesis. Dr. Curry hasn't seen this complication yet in the surgeries he has completed and thinks it is really rare. Eli continues to remind the world he is unique! These new seizures could be chronic or could fizzle out over time. No way to know. Just have to wait and see. Ugh. The ketogenic diet is amazingly hard on the road even though we thought we were prepared. Nothin like asking to use the microwave at McDonalds so that Eli could get his special food warmed up. They put it in a McDonalds carton for him. But he still wouldn't eat it. "Too Oily." Yep. Everything is too oily on this diet… We got to go do two things that were planned for our road trip that we are still so disappointed we couldn't do. (It's time for me to get over that…) But we had a lot of fun at the space center and swamp tour! We met an awesome HH family at the Ronald McDonald house who had been reading our experiences on-line. They recognized Eli in the play room! It is nice to know that our blog reaches other families who are struggling with some of our same issues. And we had other connections with them too- Rochester, NY! We were able to donate 50lbs of books to Texas Children's Hopsital! Thank you Karina, Sylvia and Laura! And thank you to everyone who helped support us over this last year and a half with all our trips to Texas! Your support helped make our trips more comfortable and lessen our burden. We will be forever grateful. I will actually miss Houston. I have become fond of the city and the hospitality we have experienced. Our HH adventure now continues at Johns Hopkins…

2014-09-06 Eli-600