This page is alittle bit about what has happened to azrea. The things she has gone threw, and her every day life.

When Azrea was born she weighed 6 pounds 1 ounce looked very healthy. A couple of things I had noticed about Azrea right away tho was that she had heavy breathing and when you would kiss her she tasted like salt. Never thought to much of it since her dad was kind of a heavy breather just thought she got that from him. As far as tasting like salt I just figured maybe it was from sweating. In about her 3rd month of life i started seeing some big changes in her. Her appetite was unreal. She was hungry all the time. It was nothing for her to put two big bowls of baby cereal away in a feeding and be hungry an hour later. I also had noticed as she ate it was going right through her. Thats when the hospital stays started up. I kept telling the doctor there was something wrong with her. A few times he put her in cause she had dehydrated. I remember the doctor had put her in the hospital and i believe it was just to put mind at ease cause the next day he came in and said he was sending her home cause her lungs were fine. And i said ok her lungs maybe ok but what about her eating. He said maybe it was just a virual infection. I can remember standing there crying begging him not to send her home. I knew inside there was something wrong with her. The doctor got angry with me and said "what do you think is gonna happen to her" and all i could say was i dont know but i know something isnt right. He told me he would send in a home health care nurse the next day to my home to check on us.

The next day the nurse came in and spent about a half hour holding her and looking her over. She then asked for my phone and she called the doctors office and told the doctor that she had to side with the mom that she felt there was something wrong with Azrea also. The doctor asked me to bring azrea in that afternoon. Went to the appointment and from there he admitted her into the hospital. At this time she was 5 months old and only weighed 9 pounds. She was literally starving to death because any time she would eat anything it would go right thru her. She wasnt absorbing anything. It was a very hard thing to watch and it really made me angry that the doctors werent listening to me. The next day the doctor came in to see how she was doing and i then asked the doctor why she tasted so salty when you kissed her. He looked over at the nurse and said order a sweat chloride test. I asked him what that was, and he said well in the old days if you kissed your baby and they tasted like salt it meant they had Cystic Fibrosis. I had never heard of it before. I asked him what it was and he said i didnt need to worry about it unless she came up positive.

I called my mother in law and asked her if she ever heard of it. She said she hadnt and got out a medical book and looked it up. I asked her what it was again and she said she wouldnt tell me over the phone and that she would bring the book into me. She brought me the book and I cried the more I read I knew thats what was wrong with Azrea. It answered everything that was wrong with her. They ran the test. The doctor came in and told me that her number on the test was 42 and 50 was positive so she was ok. I questioned why she was close to 50 and he said well even 50 is normal but if it was closer to 60 then we would rerun the test. He then told me he was gonna send her home. And once again i begged him not to send her home. And he looked at me and said there isnt anything wrong with this child other than you shove a bottle in her mouth every time she cries. I said i want referral papers today to another a doctor. He refused to give them to me. I then got on the phone to the insurance company and told them everything that had been going on. A hour later they called me at home and told me they were over riding the doctors denial for the referral and that i could take her to another doctor.

We took her to another doctor he talked with us for about an hour and half about everything that had been going on with her and said he wanted to rerun the Cystic Fibrosis test. He said 42 was way to close. He set the test up for 2 weeks later. We took her to have the test done. What they did was put electrodes on her arm to make her glands sweat they did that for about half hour then they put a special piece of gauze over the spot that sweated and then wrapped her arm up in saran wrap for 45 minutes to let the sweat absorb in the gauze then they took the piece of gauze to the lab to have it tested. We left and approx. 3 hours later the doctor called me and told me that he was sorry but she did come up positive and that i needed to bring her to the hospital immediately. It was a hard thing to take but yet it was such a relief to finally find out what was wrong with her.

When we got to the hospital her doctor was there waiting on us in her room. He then explained to us that he would have to turn her over to a specialist who specialized in lung problems and Cystic Fibrosis. We asked him how high her number was and he said it was 126. Big difference from the 42 that the other doctor came up with. The next two weeks was very rough watching her go through so much. I had alot to learn and it was all very overwhelming. I had to watch her go through surgery for a central line (an iv that runs through the vein to the heart)watch her have a feeding tube put in to having a ton of blood work done and x-rays. I then had to learn how to do breathing treatments, chest pt and had to learn how to adminster her iv meds and give her enzymes when she ate or drank anything with fat content in them. After two weeks of this i seen a whole new child.

She is 2 years old now and has done a total of 21 hospital stays. As she gets older she is doing alot better. She usually just gets a cold and cant kick it so they put her in the hospital and put in a central line or a pic line. She stays in for about 4 days so on the fourth day they can test to make sure she is getting the right amount of antibotic thru the central or pic line since the antibotics they use are so strong. After 4 days they send her home with the line in. I then do her iv meds for her. Its done every 8 hours she gets 2 different ones and takes about a half hour for each one to run through. She has to have this for 2 weeks. Home health care comes in and changes the bandages every other day since it has to be kept sterile. At the end of 2 weeks home health care removes the central line or pic line.

On a daily basis Azrea has to have 3 breathing treatments and Chest PT (has to have her lungs pounded on in 6 different spots to loosen up the mucus). If she starts getting a cold then the treatments and chest pt has to be done every 4 hours around the clock. She has to take enzymes with everything she eats or drinks that contains fat. The are capsules that i have to open up and dump on applesauce for her to take. It helps her absorb and digest her food properly. She has to take a special vitamin every day. She has to take Zantac twice a day for her tummy cause of getting upset from all the medicines she takes. She has to have nasal spray for her sinuses twice a day. She has to go to a CF Clinic every 3 months to be checked out just to make sure everything is going ok. Once a year she has to have a birthday screening at the clinic where they do chest x-rays, blood work, and sputum cultures.

Over all as of now she is doing great. Last time we weighed her she was up to 32 pounds. Hasnt had any problems with a major cold or lung problems in the last year. Thru all this she is a very strong and happy child. She brings so much joy, happiness, and laughter into everyones lives that she meets. She is what makes me strong and keeps me going. She is the light of my life!!!

One more thing I want to add. To all the mothers and fathers out there...If you ever doubt your child's doctors diagnoises...Please please get a second opinion it could mean the life of your child!!!

Azrea....Mommy loves you with everything she has and is. You have brought so much joy into my life. You give me strength and courage to face every day. When you dont feel so strong i will be your strength and we will make it through this together. Never give up hope babygirl...I love you babygirl. Love always, Mommy

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