In the previous blog, I told the story of our experiences with our daughter with her CF diagnosis and what it has been like for her. I now want to share my experience with my son Cohen and how he came to be diagnosed with Cystic Fibrosis as well.
Because Matt and I each carry a defective gene for CF, every child we have has a 1 in 4 chance of having CF. We, of course, did not know we carried the genes until after we had Emberlynn and she was diagnosed with CF because a person can only have the disease if both parents are carriers. It’s just like if we each carried a recessive gene for blue eyes; we don’t have blue eyes, but our children could potentially have blue eyes (and, incidentally, Emberlynn does have blue eyes).
It broke my heart knowing these odds. Matt and I knew we wanted more children. I could not bare the thought of thinking I would never have another child because we let the chances of them having this disease stop us. We talked about having another child soon after Emberlynn turned one. We decided that even though there was a chance of having another child with CF, we would be prepared for it and would at least be well-versed in the disease.
I found out I was expecting in April and was given a due date of January 1st. From the beginning, I suspected I was having a boy, which was exciting. It would be wonderful to have both a daughter and a son, and I looked forward to the different challenges of a boy as opposed to a girl.
For the duration of my pregnancy, the thought of the CF possibility was always firmly implanted in my mind, but I tried to stay positive. Family and friends remained optimistic, so I tried to feed off that.
My beautiful son Cohen Micah was born December 21, 2007. He was by far the most beautiful baby boy I have ever laid eyes on. His head was full of dark, silky hair, and his eyes were a deep blue. I kept saying to Matt, “Isn’t he beautiful?” He was absolutely perfect.
We were not able to have him tested in the hospital, so I had to schedule an appointment at Vanderbilt to have them draw blood to do a genetic test. Because Emberlynn has CF, they know the exact genes they would need to look for in the DNA, so a sweat test would be unnecessary to test him. In mid-January, when he was three weeks old, we had the blood drawn. I was told it would take anywhere from two to four weeks to have the results back.
Even though I was a bundle of nerves waiting for the results to come back, I was trying to stay positive. Cohen was steadily gaining weight, so I told myself it was a sign that he may not have it. But there was this ever-present fear that he was not fine. I tried to suppress it, but it was always there.
On the afternoon of Wednesday, February 6, Matt and I were sitting on the couch watching TV. Cohen was sleeping soundly on Matt’s chest, and my phone rang. I recognized the number as a Vanderbilt number, and I was immediately tense. When I answered, it was a nurse who calmly explained that Cohen’s results had come back and were the same as Emberlynn’s, which meant he, too, had CF.
As soon as I hung up with the nurse, I broke down in hysterics. Matt knew how the conversation had gone without my explaining anything. I took Cohen from him and pulled my baby boy close to me, as if holding him and whispering how sorry I was could somehow take it away.
I kept saying to Matt, “What have we done to our babies?” I felt guilty that we brought another child into the world knowing what the consequences could be. I just wanted to take it away from him and Emberlynn and for me to be the one who would have to suffer through life instead of them.
Even though I told myself from the beginning of the pregnancy that I would be prepared and I would be able to handle it, no amount of convincing can ever prepare you to hear news like that all over again. I felt like I was back in the exam room at Vanderbilt the day Emberlynn was diagnosed. It was like a recurring nightmare from which you wake up screaming.
And here we are now. Cohen is eighteen months old, and he is, without a doubt, a mommy’s boy, which is fine by me. I love his big, contagious grin, his belly laughs, his funny faces, the crazy sounds he makes--I can’t get enough of him. Like his sister, he is intelligent and lovable and a very happy child all-around. I would not trade my son or anything about him.
Having two children with CF is very difficult. Matt and I are responsible not only for the normal things parents do but also for keeping our children as healthy as we can by doing therapies and treatments for them. We have good days and bad days. Most days go by and I just go with it, not knowing a life any different. But there are some days I just cry because the reality of it all rips my heart to shreds. My children have a disease that can and will most likely take their life one day. And if you have children, you know that having something like that in the back of your mind will eat at you.
I have never been angry with God. I am extremely blessed to have my children, and I suppose God felt I could handle this kind of thing. I will admit I have questioned Him, but most of the time, I just pray that He keep His hand over my children and to give me the strength to carry on and to help me be a good mom to my children. I hope when they get older that they can sincerely say that I did okay. Because I’m really trying. I’m doing the best I can.
Faith...Hope...Cure...
-Jessica A.
Tuesday, July 7, 2009
Emberlynn's Story
Most of you have heard this before, and Lord knows I've told so many people that the words just tumble out like a rehearsed scene. But because we are trying to raise money for the CF Foundation and are trying to educate people on this disease, I thought I would first start by sharing when CF became a major part of our lives.
Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.
At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born, but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare too much better.
Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly increased, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing.
Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'
Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.
In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.
On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.
Fast-forward to the present day, and Emberlynn is a happy, well-adjusted, loving, and thriving three-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.
I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.
Thanks for reading.
Faith...Hope...Cure...
-Jessica A.
Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.
At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born, but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare too much better.
Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly increased, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing.
Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'
Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.
In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.
On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.
Fast-forward to the present day, and Emberlynn is a happy, well-adjusted, loving, and thriving three-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.
I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.
Thanks for reading.
Faith...Hope...Cure...
-Jessica A.
Looking good!
So far we are looking good in our hometown neighborhood. I want to give an AWESOME shout out to the MSC who has a running total of 100.00! That's on baked goods and donations only. THAT IS AWESOME! Also a great shout out to all of our family members who have donated. We really appreciate it.
The community thus far has really helped us out! Starbucks, NCG, Firestone, NWTF, A Sparkly World, Olive Garden, Demos.. ALL are playing huge rolls, and many have not called us back yet but are very promising.
We are all really looking forward to this wonderful event, and are hoping for a wonderful turn out. This is our opportunity as a community and family to support a WONDERFUL cause. Making CF... CURE FOUND. What wonderful words for Jessica, Matt, Emberlynn, and Cohen to hear. Not to mention all of the other families that are affected by this devastating disease. God Bless EVERYONE who helps with this project. WE CAN AND WILL DO THIS!
FAITH HOPE CURE
Jessica Harris
Wednesday, July 1, 2009
Prayers
So tomorrow we embark on the community asking for donations for our Cystic Fibrosis dinner on August 8th. Please think of the three of us when we go!
We are having a benefit dinner at the American Legion Post #76 in Gallatin, TN. It will be a dinner/silent auction/bake sale! Dinner starts at 5pm with $5 a plate! All our money that we raise will be donated to the Cystic Fibrosis Foundation. Our hope is to make $5000.00 by our September walk!
We'll post more information a little later this week. We hope everyone has a blessed and safe Fourth of July! Remember to thank your friends and family in the military!
Faith, Hope, and Cure!
Cori
We are having a benefit dinner at the American Legion Post #76 in Gallatin, TN. It will be a dinner/silent auction/bake sale! Dinner starts at 5pm with $5 a plate! All our money that we raise will be donated to the Cystic Fibrosis Foundation. Our hope is to make $5000.00 by our September walk!
We'll post more information a little later this week. We hope everyone has a blessed and safe Fourth of July! Remember to thank your friends and family in the military!
Faith, Hope, and Cure!
Cori
Tuesday, June 23, 2009
Information!!!
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
Symptoms of Cystic Fibrosis
People with CF can have a variety of symptoms, including:
very salty-tasting skin;
persistent coughing, at times with phlegm;
frequent lung infections;
wheezing or shortness of breath;
poor growth/weight gain in spite of a good appetite; and
frequent greasy, bulky stools or difficulty in bowel movements.
Statistics:
About 1,000 new cases of cystic fibrosis are diagnosed each year.
More than 70% of patients are diagnosed by age two.
More than 40% of the CF patient population is age 18 or older.
The predicted median age of survival for a person with CF is more than 37 years.
The Cystic Fibrosis Foundation:
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Thanks to the dedication and financial backing of our supporters--patients, families and friends, clinicians, researchers, volunteers, individual donors, corporations and staff, we are making a difference.
Learn more about Testing for Cystic Fibrosis.
Explore all aspects of Living with CF at every stage of life.
See what Treatments are available and what’s in development
GREAT STRIDES is the Cystic Fibrosis Foundation's largest and most successful national fund-raising event. This year, our TEAM is walking in the GREAT STRIDES walk at the Station Camp High School walk on Sep 26, 2009 9:00 AM Please help us meet our fund-raising goal of 5000.00 by sponsoring our team. Your generous gift will be used efficiently and effectively, as nearly 90 cents of every dollar of revenue raised is available for investment in vital CF programs to support research, care and education.
Making a donation is easy and secure! Just click the "Click to Donate" button on our page to go to make a donation that will be credited to OUR team. Any amount you can donate is greatly appreciated!
Cystic fibrosis (CF) is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES!
OUR HOME PAGES: YOU CAN DONATE AT EITHER OF THESE PLACES!!
We are also working on a silent auction, bake sale and spaghetti dinner all to raise money for CF! more details to come!
THANKS FOR YOUR INTEREST!
Jessica A, Cori A, Jessica H
Subscribe to:
Comments (Atom)
