Search Results for: blog five things to do when your child is diagnosed with cystic fibrosis

Finding and Keeping the Faith

In my two years as a mom to a child with cystic fibrosis, I have me many other parents of children with special health care needs. Each child’s need has been different, from cerebral palsy to epilepsy and spina bifida to Down syndrome. One thing seems to remain the same between these parents, their faith. While each one has been given the challenge of raising a child with a disability, each one also has had the strength and the faith to endure, and to create a safe and happy life for their child. So what came first, the child or … Continue reading →

Conner’s Legacy

On June 24, 2010, the worldwide CF community was rocked when Conner Jones, age 7, passed away from complications of cystic fibrosis and prune belly syndrome. Although everyone knew it was coming, the loss of Conner left a hole in the Jones family forever. And it was a difficult time for parents of children with CF. I cried for days, and if you saw any red balloons flying above you during the end of June, those were for Conner, whose favorite color was red. Conner was a precious child who was diagnosed with prune belly syndrome while still in the … Continue reading →

Cord Blood Banking

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The topic of conversation among pregnant moms and their families these days is cord blood. Should you store your baby’s cord blood in case of a future health crisis in which one of your children might benefit from it? What if someone finds a cure for cancer by using cord blood? Will the expenses of paying to store it be outweighed by the slight chance of saving your child’s life with it someday? Here are some thoughts to take into consideration when making this decision. Cost. Obviously, cost is a big factor in the decision of whether or not to … Continue reading →

Parenting Children with Special Needs is a Positive Experience

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I’ve gone through the emotions of learning the diagnosis of my child. My daughter was just a few days old when we learned she has cystic fibrosis, an incurable, chronic condition that would leave her open to frequent lung infections and a shortened life span. I went from grief, to denial back to grief and anger and eventual acceptance. Today, nearly two years later, CF is no longer a stamp across her forehead, it is just a part of life for us. And the extra care and protection we have to give her has led to a strong bond. A … Continue reading →

Children’s Books about Disabilities

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We all know that reading to children benefits them in multiple ways. It helps with bonding when they are young. It helps with the bedtime routine and most importantly, it helps prepare children to learn to read for themselves. Reading to a child also opens new worlds to them and helps them to understand life as it is happening around them. If your child has a disability or knows someone who does, reading can help ease any anxiety and answer questions that he may have. One particular series of books Friends with Disabilities by Amanda Doering Tourville explores disabilities and … Continue reading →

The Effects of Off Gassing on Our Children

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When Maggie was born, I knew little about off gassing. I knew it existed, I knew it caused problems, but I wasn’t overly concerned. Then she was diagnosed with cystic fibrosis and protecting her lungs became our number one priority. That is when my husband and I began to pay much closer attention to the products in our home. We rid our house of chemical cleaners and bleach and we keep the windows open as often as possible. We also used no VOC paints and run air purifiers throughout our home. Off gassing has become a serious threat to our … Continue reading →

Singing Sisters Battle Cystic Fibrosis and Inspire Millions

I’m not one for watching reality television. I remember the first season of The Real World and that’s about it. I don’t like watching people make fools of themselves and dislike even more, the insulting and heartbreaking comments that spew out of judges on competition shows like American Idol. This year was different for me though. While I didn’t watch the opening rounds of America’s Got Talent, I did tune in when I heard about Christina and Ali, two sisters who were competing on the show and who both battle cystic fibrosis. My daughter has cystic fibrosis, so the issue … Continue reading →

Five Things to Do When Your Child is Diagnosed with: Cystic Fibrosis

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You spent your entire pregnancy dreaming of who the baby inside of you would grow to be. Whom will she look like? What should we name her? What color do we paint the nursery? And then the news comes that your child has cystic fibrosis. In your fear and sadness, you are completely overwhelmed with what to do next. The most important things to do involve getting your child’s health on track. 1 Make an appointment at the closest accredited cystic fibrosis clinic. It is extremely important that your child be taken care of by a staff of doctors, nurses, … Continue reading →