Hi Jess,

Congratulations on your new baby girl! Everything will be fine. My almost 5 year old daughter is so completely "normal" you would never know she needs meds. People are amazed when they find out she needs meds. I remember talking to her preschool teacher about what signs to look for and call me in cases of illness. this was before she had met my daughter. Later she admitted she expected to see a very sickly, weak child. NOT! My daughter is so full of life and has a strong spirit which we hope will help her in years to come. We, too have waited on surgery until she is old enough to understand and be a part of the decision. I had one urologist guilt my so badly (badger really) until I made an appointment for surgery. That’s when I cried everyday all day. Peace came only when I cancelled the appointment. This was the absolute hardest decision and thing I have had to go through but I know it was right for all of us. Do lots of research and you will know what is right for you. Just don’t let a doctor bully you. Also, once we were as prepared as we could possibly be I felt much more calm. We always carry the solucortef, advil, tylenol, thermometer, extra cortef. This way we can handle emergencies and we feel comfortable going on a hike away from hospitals. Good luck! Keep notes and copies of research that you find. WE have a big three ring binder. Another piece of advice that someone told me on this board: when she is sick, write down times and meds administered along with fever tmeps. This was really handy last week as my daughter and I both had high fevers. I could barely see but I was advised to alternate advil/tylenol every three hours for fever. I wrote it all down to keep track so I would give what was needed appropriately. Take care. I am glad you found this site. It has been such a blessing for my sanity to be in contact with others who know what I’ve gone through. Julia