Thank you for your kind words and compliments. Believe me I still faulter and I still need to come here and seek others advice and direction. I think I will do that the rest of my life.

In dealing with that first illness. Yes, it is terrifying. BUT, each time you deal with it, it does get easier. When my daughter was young and get very sick, I would have to step out on my front porch (we live in the country) and fall apart sobbing and praying to God to help me. It was my make shift alter. I would come in wash my face and put on a brave face and work through the illness. I would envy my husband as I would watch him through the window, fearless and calm. There were days I felt they would be better off without me. But, without fail, God was there to show me, they needed me and I could do this. One time she was sick with a fever. She was about 3. I did all the steps to making sure she was stressed dosed, gave her the Motrin, everything that was supposed to be. It didn’t seem to be helping. This was my first illness without my husband home to help. So I was scared. I kneeled down to pray. After my prayer I mumbled to myself, "Why did I just pray, you probably didn’t hear me anyway. I wonder if you are even real." Within minutes my daughter returned to her normal happy self and my prayers were answered. The next day I got a card in the mail that said, "Believe" God is always with you. Sheala, I almost dropped the card. A friend told me she was thinking about us and decided to send the card. She had no idea my daughter had been sick. She said something just told her to send me a card. I know now today, it was God telling her to send me that card. He can’t be everywhere so He sends His messages through people around us. It took so many years to build my trust back in God. I finally went to a retreat at my church and that changed EVERYTHING. It gave me that opportunity to really see how God was there in my life, every step of the way with this CAH stuff. My daughter too could have died from a crisis that first week. She nearly did. But the events that lead up to her seeing this particular pediatrician were truly amazing. The events that lead up to my daughter’s birth were truly amazing. God continues to amaze me today. 

And when my daughter was a toddler she hated blood work. So I prayed. Then I found EMLA cream to numb the area. It was magic in a tube! It took some time for my daughter to trust that it would work, and it did. Prayer, it got us through it all.

My daughter has asthma on top of CAH. Imagine my horror when I found that out. She was five when diagnosed. One day I was walking the halls of our Children’s Hospital. I was so down about all the tests my daughter had to endure that day. She had blood work, then to radialogy to get her bone age done, then to the asthma clinic to go through more testing. I was so sad as I walked the halls. Griping in my head that it was NO fair my daughter had to endure all this crap. I was so lost in my own misery that I didn’t notice my daughter skipping next to me happily. Arms full of the treats each place gave her for being good. She looked up at me and said, "Mommy, I am the LUCKIEST girl in the world!" It made me stop dead in my tracks. My eyes filled with tears and I said, "You ARE the luckiest girl in the world" It is all a matter of prespective. We have always approached CAH with positives. When we get blood work, we would ride the escalators and glass elevator, and watch the ding balls in this enormous maze in the lobby. Then we would go for lunch at McDonalds. We made it fun, trying to emphasize on the fun and not the blood work. She looked forward to the blood work soon. I can’t believe there was a day we fretted over it. Today at almost 10 she is so funny about it. She said Saturday when she returned home after blood work with my husband, "MOM, this kid MY age was balling over blood work!" It just blew her away. I had to explain that many children NEVER have had blood work in their life and that was scary for them. She didn’t realize that it could be their first time because she has ALWAYS went for blood work. Now she has more compassion for those children crying her age.

Ok I just rambled on. Just know that one day you will look at her and not the CAH. YES CAH hits you in the face and gut when they do get sick but you adjust and work through it. May God bless you with the strength and courage to get through it. He has blessed you already. You found this message board.