Roxanne Update

Roxy’s recent visit to her local pediatric neurologist, Dr. Y, went well. After a long discussion about pros and cons of different drugs, Dr. Y, Dan and I decided to change her regimen. The most toxic of the medicines, the one that suppresses her immune system, just doesn’t seem to be working, so we're weaning her off it. We're also switching another one of her drugs. During this ramp down/ramp up stage, she is on 4 different drugs, but we feel it’s worth it to reduce the number of seizures she has per day.

After just two days of the new drug mix, she had a much better day today. Seizures are down, her color seems better, she is eating and sleeping better, and generally less crabby. We aren’t getting too excited yet, but we are blessed to have had a good day, and pray for many more!

Dan and I are still holding up pretty well, but have started to realize how very long this road to recovery will be for our family. I’ve now begun to explore ways to enable me to get more than 4 hours of contiguous sleep (and sometimes cumulative! Ouch!) per day. I call our project “Operation ZZZs” and feel it’s the key to my continued good health. We’ve talked to our doctor about getting a nurse’s aid for respite care, and he is working on it. In the meantime, if any local DC folks know about options in this area, please let me know.

In a nutshell, things are improving. Thank you for everything you do to help us through this. Until next time, please continue to keep Roxanne in your thoughts and prayers. She is so sweet.