Savannah Protests

This week so far has been a better week for Savannah. She had her baptism and another EEG on Tuesday which showed no seizure activity which means the meds are working. She went to a trache collar that gave her oxygen and humidification. She is breathing on her own and now does not need the oxygen just the moisture. She is finally starting to talk above a whisper some and is totally being Savannah. She is protesting therapy a lot and protesting having to go to bathroom in diaper. We are so thankful for the turn around of her condition for now and to hear her talk and complain. The diagnosis has pretty much been confirmed although we are still waiting on the gene testing. Her muscle was depleted of mitochondria by 70 % and the liver by 75 %. We do not know yet the length of time she has just that she is truly a fighter and we will enjoy the time we have with her. We have begun the training for the trache. Mommy has changed the ties that hold it on twice and suctioned her several times. Nana and Papa have suctioned once each. The part Mommy dreads is the changing of the trache tube. I guess once I learn and do it a lot it will be a piece of cake. We have started talk with therapists and social worker about what equipment is needed. So far we know the trache and feeding things, bath chair, reclining wheel chair, therapy chair, and car seat. Thank you for the many prayers and assistance.