keeping Kaelyn healthy

It's been quite a while since I've been able to post on our blog, but now that that craziness of the holidays is a thing of the past, I plan to post much more.

Today I wanted to share a little about Kaelyn's CF care in order to keep the mucus out of her small lungs, and maintain her overall health.  This is a day in the life of Kaelyn:

Everything on this table is part of Kaelyn's daily CF care currently. For those of you who follow Kaelyn's story and know about her CF case, one thing you will notice that's missing from her daily routine are pancreatic enzymes. 85% of those with CF have pancreatic problems as well. Fortunately Kaelyn does not.  Almost everyone with cystic fibrosis needs to take pancreatic enzyme supplements with meals and snacks. Taken by mouth, the enzymes go to work in the intestines to help digest food so it can be absorbed by the body.

1.  Nebulizers – Clearing the Airways
Since inhaled drugs more easily reach the airways, they are common in CF care. Inhaled treatments can be given by aerosol, a mist treatment made from liquid medicines. In this case, the drug goes into a nebulizer (on left in picture) and is attached to a small air compressor (in back of picture). The compressor blows air through the nebulizer and makes a mist. CF patients inhale the small particles in the mist through a mask (on right in picture) or mouthpiece (front in picture) for several minutes to help clear the mucus.

2.  Inhaled Medication #1 - Pulmozyme
CF is a complicated disease that causes your body to produce extra-thick, sticky mucus. Pulmozyme uniquely targets one of the causes of this thick, sticky mucus to help keep mucus thin and loose. Pulmozyme may help improve lung function and reduce the risk of infection in mild to moderate disease.

3.  Inhaled Medication #2 - Albuterol
Albuterol is used to prevent and treat wheezing, difficulty breathing and chest tightness. It works by relaxing and opening the air passages to the lungs to make breathing easier.

 4.  Vitamins and Minerals
Most people with cystic fibrosis do not absorb fats properly, so certain vitamins, or "fat-soluble" vitamins, are not absorbed. These vitamins are Vitamins A, D, E and K. People with CF usually take these vitamins daily.
Kaelyn's main deficiency is Vitamin D.

5.   Avoid The Spread of Germs
Cystic fibrosis puts the airways at risk for lung infections. There are, however, effective ways to lessen the risk. One way is to limit contact with known germ sources. Although germs are everywhere and cannot be avoided, one of the best ways to keep from catching or spreading germs is through effective hand-washing, whether with soap and water or alcohol-based hand gels. Everyone with CF should avoid unnecessary contact with people who have a cold or any other contagious illness.
I keep these mini ones in my purse and we recently got Kaelyn the ones she can attach to her bookbag to have at school.

6.  The Vest - Chest Therapy
The Air Pulse Generator rapidly fills and deflates an inflatable vest, gently compressing and releasing the chest wall up to 25 times per second. This process, called High-Frequency Chest Wall Oscillation (HFCWO), creates mini-coughs that dislodge mucus from the bronchial walls, increase mobilization, and move it along toward central airways.

Here are some photos of Kaelyn getting treatments with her vest:

CF care is so, very important!  It's daily, it's time consuming, but it keeps Kaelyn strong and helps our brave little girl beat CF every day!  It might not be much fun for any of us, but keeping Kaelyn healthy and happy is our #1 priority!

when you're faced with the unexpected...

Each case of CF is different.  While some have very severe cases of the disease, others are only faced with mild symptoms.  Regardless of the severity, it doesn't alter the way each parent feels when they receive the news that their child has cystic fibrosis.  It doesn't alter the uneasiness or uncertainty that we each face when it comes to our child's future - because that's how it is with this disease; it's filled with the unknown.  When exactly will things get bad?  When will things get better when they do go bad?  When will a cure be found?

Raising a kid is a challenge in itself - then add an extraordinary hardship into the equation, like Kaelyn's CF, and you're faced with a whole additional set of challenges.  No one can ever 100% prepare you to be a parent when the day comes.  Although it seems everyone wants to saturate your mind with parenting tips and advice when you have kids.  I've been bombarded with the typical parenting remarks of, "You should do this" or "Why are you doing that".  The advice and opinions are endless!  But, what about when you receive unimaginable news about your child that no one prepared you for or offered any prior advice in handling?

Life is so random and filled with the unknown.  I've learned that every day you should expect the unexpected, whether it be good or bad.  It's full of up's and down's, twists and turns - and through it all, we come out a little bit stronger.  Sure no one prepared me for the news of Kaelyn's CF.  I'm not sure that if I was prepared or knew a little bit more about it at the time that I would've handled myself any differently or that it would've hurt any less.  There's some things in life that you just can't prepare yourself for because of their unexpected arrival.  However, how you handle what you're given is completely up to you, no matter the advice you receive or the lack there of.  Plain and simple - Not everyone has the answers you're looking for.

Part of why I've turned to blogging is to let out all that's on my mind because some days I just need to, for my sanity.  I don't speak of CF on a regular basis to friends and family because as of now, Kaelyn is extremely healthy.  Some people may even "forget" she has the disease, but for me I never forget no matter how well she is doing.  Thoughts always consume my mind about her future.  That's the other reason why I'm doing this - to read the opinions, advice and stories of others faced with similar challenges.  Some people ask me why I choose to read some of the CF blogs that are out there - I've been told they are "too sad or depressing" for me to read.  But to be honest, these are real people sharing real stories and experiences.  Though I've never met these individuals, I feel their joy in good news they share and their pain on the dark days - It provides a sense of reality and a way for me to cope with things.  Most aren't filled with an overwhelming amount of positive energy, but what they are filled with is the ugly truth.  The facts about their biggest enemy, CF and the continuous reminder that cystic fibrosis is still taking away young lives.  They share their stories simply to promote awareness.

So this is me today.  The me that's been made stronger, who's able to share advice and spread awareness - because there was a time 3 years ago that I couldn't do either.
 
LIFE...
filled with the unknown...
"You never know how strong you are until being strong is the only choice you have."