9 months old

Ellie is now 9 months old! She has had a really good month, and we have been able to get out a lot. We've gone to play-groups, grocery stores, parks, friends' houses, and church with Ellie. We actually are starting to feel like a semi-normal family! We pray it will stay this way. We have also been without nurses on the weekend for about a month and it is going great! It is really nice to be all sleeping upstairs together, and Ellie is requiring a LOT less attention at night than when she first came home. We have a room set up upstairs for her across the hall from us. We still have a nurse coming during the week.

Ellie had her 9 month check up at the pediatrician this week. She is growing very well and weighs 18lb 1oz. She is still on a diet of completely breastmilk and will continue on that until she turns a year old. At that point, I will be starting a blenderized diet of whole foods that we will give her through her tube, mixed with breastmilk. The doctors have been quite impressed with how healthy she looks and how well she is growing. That makes me very proud :)

Ellie also saw the neurologist this week for a follow-up on the test results we got. The bottom line is that we are done testing for the time being. We have tested for everything that makes sense for Ellie, and she is officially a mystery. We are unsure what to feel about this. It is hard to just stop looking, but we are pretty certain that there is nothing else to look for-not that we have come across in our research anyway. The neurologist said that if she is undiagnosed, we need to assume the worst: that it is a heredity disease and any future children would have a 25% chance of being affected. We are praying for future research opportunities to arise so that some day we will know what Ellie has.