The Hughes Family: She’s here!

Tuesday, August 31, 2010

She’s here!

The much anticipated, Emme Jane has finally arrived! Our good friends, April and Troy, had their second daughter early Saturday morning. She was due to come any minute all week but of course, she waits until I leave for the weekend, to make her grand entrance. I couldn’t wait to get my hands on her.

She’s just as delicious, adorable, kissable and scrumptious as this picture looks. I couldn’t believe how tiny she was at only 3 1/2 days old. Congrats to their new family of four!

In other news, the newest and coolest CF invention arrived at our house today. A woman on Etsy, sells these harnesses for CFer’s or any other kids that require nebulizer treatments.

It holds Ben’s strap in place on his head so it doesn’t slid off. The little stinker even shook his head around trying to get it off- he was unsuccessful. We ordered one a couple months ago but didn’t use it for awhile because Ben wasn’t on regular neb treatments. Our first one broke but the seller was kind enough to send us a new one asap.

I’m thankful for inventions like the breathe easy mask that make treatments easier. I just wish we didn’t have to deal with Cystic Fibrosis at all.

5 comments:

Sweet Shots By Nicole!August 31, 2010 at 8:12 PM
I hear you on the not dealing with CF at all. But very thankful for anything that helps. Rylee doesn't have issues with the strap falling down, more like she pulls it down because she likes to hold it up herself. Shes a big girl at the age of 2!
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Rachel OlimbSeptember 1, 2010 at 7:51 AM
Oh how it warmed my heart to see your little boy with the mask holder! Of course you know we're big fans of it :).

Here's the direct link to her Etsy page...
http://www.etsy.com/listing/45103961/breathe-easier-nebulizer-mask-holder
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What is Cystic Fibrosis?

Cystic Fibrosis is a life threatening, inherited disease, that causes mucus to build up and clog some of the organs in the body. Majorly in the lungs and pancreas. When the mucus clogs the lungs it makes breathing very difficult. The thick mucus also causes bacteria/germs to get trapped in the airways, which causes inflammations and infections that damage the lungs. The mucus can also block the digestive tract and pancreas. It stops the enzymes from getting into the intestines. The body needs enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.

How do people get CF?

Cystic Fibrosis is a genetic disease. Which means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body’s cells, control cell function by serving as the blueprint for the production of proteins. The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene.one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

What is the life expectancy for people who have CF?

There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a persons health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago. Improved treatment and management of Cystic Fibrosis now results in a much longer life expectancy. Since the 1960’s, average life expectancy has risen from 5 up to just over 37 years

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Tuesday, August 31, 2010

She’s here!

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