We went to St. Jude yesterday for a neurology appt. All went well (other than driving in the downpour). We just talked about her seizure medication, side effects, dosage, etc. We are going to reduce her dosage slightly and see if it helps with behavior and sleep problems. Hopefully there will be no breakthrough seizures and we can keep her seizure free on less medication! We took Lyla with us but Jason and I had a hard time listening and concentrating on the doctor with all the commotion! We decided it would be best to leave her behind when we go Monday and Tuesday. I really want to be able to give 100% of my attention to what it going on with Abby. I hate leaving her though.
Please pray for all of us. It was hard to go back after being gone so long. Those "I don't belong here" feelings were pretty strong! It's also hard to see all the other kids who are so sick-we are so fortunate but we know that at any time she could be one of those beautiful bald babies. Pray that the tumor will not have grown! I really want 3 more months of freedom!