Azer loves to sing and talk, and loves to play baseball. His favorite foods are pizza, spaghetti, and Mac & Cheese. His favorite things are his baseball glove, his Playstation, playing with his cars and toy hummers. He loves riding bikes with his sister, skateboarding, swimming, and going for walks. He loves big trucks, hummers, and the Texas Rangers (pretty much anything associated with baseball). His favorite colors are red, orange, and yellow.
Overall, he is a normal boy. Cystic Fibrosis does not limit what he can do. Even though CF takes up a lot of our time, we do not allow that to dictate what he can do.
Family Comments
Comments From Grandma
Azer has a little sister named Reema. She is about 11 months younger than him (yes, we are busy). She is CF free and our little princess.
When my daughter called me and said that I had a grandson, I was so overjoyed. My daughter put the phone close to him when he was sleeping, and I could hear his baby sighs that melted my heart. When my daughter called me and told me there was a chance that my grandson had Cystic Fibrosis (CF), I wanted to know what CF was, and I wanted to know if they were sure that there was really chance that he could have it. I wanted to know everything possible about this disease and if there was a cure, and how we as grandparents could support our grandson. I said to my daughter "Don't be overwhelmed, we will get through this with God's help." When I found out that it was definite that Azer had CF, I felt devastated. I had heard of a Pastor's daughter that had struggled with this disease and had died at the age of 18.
My daughter and I live far apart, so it took until December for her to come home for a visit. The very first time I met Azer, he looked at me with his big brown eyes, and he smiled at me and his grandfather. It melted my heart. My daughter let me watch him through the night so she could get some rest. It was a long, tiring night but I loved to hear his breathing next to me. I kept my hand on his carrier, rocking him through the night. I remembered how I used to watch my daughter when she was a brand-new baby. But, it was different this time because I was listening intensely to his breathing. I was conscious of every noise and cough he made.
I was impressed with my daughter's knowledge about CF when she came. She explained to me what the different medications were for and how to give Azer his enzymes. When she did respiratory therapy on him, both my husband and I were shocked at how loud CPT was! We were both thinking it was hurting Azer because he was crying. My daughter explained what CPT was for and that it does not hurt. Azer was coughing and having some respiratory problems when he was here. It was amazing to hear my daughter talking in medical terms with the doctor on the phone. You learn all of the terms and names of medications quickly when you have to repeat them so many times to so many different doctors!
The Lord spoke through a Pastor that God saw our concern for our grandson and that we were not to worry about him and to put him in God's hands. This helped us not be so overwhelmed about the day to day ups and downs that we hear from our daughter. Even though my daughter is far away, we keep in touch everyday on the phone. I like to tell my daughter about high-calorie French, Hungarian, and Italian recipes that have been in the family for years. These recipes haven't help women's figures in our family, but it will help Azer!
I always like to hear about the updates about CF and the new research that is being developed. It is exciting to watch the average age-survival go up every year and see more and more CF people having families. It puts hope in a Grandmother's heart that she will someday have great-grandchildren!
When I found out my wife was having a boy, I was so happy. When Azer was born, the nurse put him in my hands and everybody at the hospital said that he looked like me. I was thinking, "now, my family is complete." He was such a good boy, and he didn't cry that much. After 4 days, instead of gaining weight, he was loosing weight and we were so worried and were wondering why. Then we found out that Azer had Cystic Fibrosis. At first, we didn't know anything about it. But, then, when we found out about the disease. we were so shocked and scared. But, I believe very strongly that God gives everyone life, and God plans how long they will live.
The doctor prescribed therapy twice a day and several different medications. I had a full time job where I worked 14-16 hours a day and I didn't have that much time to spend with Azer, to help my wife with the treatments. Azer has been admitted to the hospital many times, and each time, I am really scared. Sometimes, when Azer has a CF appointment, I get scared that the doctor will say that something else is wrong with Azer.
My wife is very strong. Sometimes she is emotionally down, but I talk to her about the new treatments, to pray and that everything will be ok. I always thank God that Azer is doing well, that he is growing and gaining weight. He plays all day with his sister and never stops talking. Azer and Reema bring so much happiness to us. They are like two roses in our life. I am always so happy when I see our kids playing. I look forward to coming home and having dinner with the whole family every night. When we put the kids in bed, Azer and Reema always want a kiss before we leave the room. Both of our kids love us very much and we could not think of our life with out them.
Comments from Daddy
On October 6, 2003, Azer was born. I heard him cry, and I looked down, and I saw how beautiful he was. He looked just like his dad. He was breathing fine, and he seemed to be feeding well. Breastfeeding wasn't coming very easy like I thought it would, but I was trying. They did the routine newborn screening which screens for a bunch of diseases including Cystic Fibrosis. Just a prick on the heel and that was it.
We went home the next evening. That night, all he did was cry. I was trying to feed him, but he seemed so hungry. We went to the store at 2 in the morning to get some bottles and formula. He drank the whole bottle very quickly and slept for 5 hours straight.
A few days later, he had his first doctor's appointment. The doctor tested his jaundice level and said it was a little high. He had lost weight too, but they weren't concerned because most newborns loose weight at first. The next day, his jaundice levels went up some more and he still wasn't gaining weight. I felt so terrified. The doctor said to try giving him more bottle feedings and to concentrate the formula so it had more calories. All of his diapers were poopy. It seemed like everything he ate came out the other end in less than an hour. He would drink bottle after bottle and still seemed hungry. The doctor said she wanted to wait and see if he improved.
I received a phone call not long after, saying that the results from his newborn screening came back, and it was possible that he had Cystic Fibrosis. We went to get a sweat chloride test done to know for sure. They stimulated the sweat glands on his forearm with medicine and electrodes to collect sweat. The test came back positive, which meant that he had Cystic Fibrosis. Azer's pediatrician recommended going to the Children's Hospital to see a Pulmonologist. When we went, the doctor told us what CF was and how it is treated. He also prescribed pancreatic enzymes to help him absorb fat and protein. The respiratory therapist taught me how to perform CPT or Chest Percussion Therapy. This is done by clapping vigorously on the chest to loosen the thick mucus.
In a matter of a week, he was absorbing his food much better, had gained weight, and he his jaundice levels had gone down. He was still not absorbing as well as he could, so the doctor prescribed a different brand of enzymes and made him take an anti-acid to help the enzymes work better. Anti-acids are given to CF patients sometimes because they have very acidic stomach acid which causes the enzymes to become activated too soon.
Azer started to do much better, but it was a struggle for him to gain weight normally. It still is, but its getting easier since he is getting older. Everyday Azer does breathing treatments. Usually the treatments take up almost 2 hours everyday. When he is sick, we have to do more treatments to keep his lungs clear. He has to take about 15 pills everyday, some just to digest a meal. We are grateful for these treatments and medications, but they are not a cure. Despite all the medications he has to take, he still gets sick, and none of these medications makes CF go away. Azer has a bright future, but we still all pray for the day that CF will stand for "Cure Found" and Cystic Fibrosis will not claim any more lives.
