questions from kaelyn

Last night as I was putting Kaelyn to bed, she hit me with some pretty unexpected questions.  As soon as I put her in bed she said to me, "Mommy I'm not coughing anymore, my cough is all gone".  We all know at this point that coughing is common for those with CF, however for Kaelyn, she rarely has a cough.  Times when she would get sick throughout the winter, a cough would accommodate a cold but on a day to day basis it's rare to hear her coughing.  I thought her comment about her cough was pretty random being that she hasn't had a cough in quite some time and has been very healthy.  I agreed with her that she hadn't been coughing in a while, and after that statement the conversation went something like this, and yes this is a 3 year old I have to answer to:

Kaelyn - "If my cough is gone then I don't have to do my shaky vest anymore!"  (in an excited tone)

Me - "No, you still have to do your shaky vest every day.  It helps keep you healthy and keeps your cough away."

Kaelyn - "Why?"

At this point my heart sank... I'm about to explain why and tell my 3 year old she has cystic fibrosis.  Until this point, we'd just go about our day, do our treatments & meds, and Kaelyn has never questioned it.  I don't believe in making up stories about why she does what she does or hiding from her that she has CF, it's a part of her life.  I figured I'd tell her about cystic fibrosis and explain what it was when the day finally came that she asked... which happened to be last night.  I figured one of two things would happen when I told her:  1.) She would give me the puzzled, curious look of a 3 year old for a few seconds, then start talking about something else... OR 2.) She would ask what CF was.  Knowing Kaelyn, my gut feeling was she would go with option #2.

Me - "Well you have to do your shaky vest every day forever because we found out you had something called cystic fibrosis when you were born."

Kaelyn - "But I'm not a baby anymore!"  (since I said to her, "when you were born")

Me - "Well I know you aren't a baby anymore, but not just babies have cystic fibrosis.  Older kids and big people have it too."

Kaelyn - "But none of my kids at school have cystic fibrosis."  

Quick time out from this conversation - hearing Kaelyn say "cystic fibrosis" was the best part of this whole convo.  She did pretty good at pronouncing it, but it reminded me of why some kids call cystic fibrosis, 65 Roses - much easier to say! 

My conversation with Kaelyn felt like I was talking to someone a few years older.  Each response she gave to each of my explanations was some what unexpected...

Me - "Well no, none of your friends at school have cystic fibrosis.  Not many people have it."

Kaelyn - "Well where did my cystic fibrosis come from Mommy?  Who gave it to me?"

Sinking heart again....

Me:  "It came from mommy and daddy."

Kaelyn:  "Why did you guys give it to me?"

At this point, I wasn't exactly sure how to explain it.  I never thought our conversation would have become so deep for someone who is still so young.  I never thought I would be trying to rack my brain for the best, and most simplistic way to explain it.  Afterall, she wanted to know.  Would she remember what I explained to her?  Of course she would, this child remembers EVERYTHING... often she remembers things I don't even remember...  So I wanted to to make sure my explanation was correct (in the simplest form) because I knew what I told her last night, would be repeated at some point down the road when she talked about CF again.  So as best as I could, I gave her this simple explanation: 

Me - "Well just like mommy and daddy gave you the color of your hair, your eye color, how tall you'll grow to be, and lots of other things... you got cystic fibrosis from us too." 

Kaelyn - "What does it (CF) do?"

Me - "It makes you cough and some times makes you sick."

Kaelyn - "Then I do my shaky vest, right mommy?"

Me - "Yep, that's right!"  And guess what?"

Kaelyn - "What?"

Me - "Even though you have cystic fibrosis, you'll always have mommy and daddy here to take good care of you and help you to stay healthy."

After that, we smiled at each other, and I gave my little lovebug a hug and kiss.  My eyes filled with tears, but I held them back as best I could and quickly wiped them away as we hugged.  I know some people won't agree with how I explained everything to my daughter, but I know her better than any outsider.  This was one of the very first, mature conversations I've had with Kaelyn as she inches towards turning 4 in May... and I know it most certainly won't be the last. 

As a parent, there are no perfect answers, solutions, or advice to follow.  But there are millions of ways to be a good parent to your child - and that mostly stems from taking the time to get to know your child and what's best for him/her.  In that moment last night, the answers I gave to Kaelyn's questions are what felt best in my heart.  I'm not embarrassed by my child having a genetic disease and I never want her to feel that way either.  It's not something that should be kept a secret from her, nor should she keep it a secret from anyone else.  It's a part of who she is and who she will become.  I strongly feel that cystic fibrosis will never control Kaelyn's life unless she lets it.  She should run, play, have fun and enjoy life every day regardless - and don't want anyone to feel sorry for her.  The more she understands about CF and how to stay healthy, the better her overall life will be as she grows up.  As a parent of a child with CF, it's my job to teach her since kids learn by example.  It's my job to let her live her life as normally as possible and not hold her back just because she has CF.  And mostly importantly it's my job to smile every day and remain positive & strong, making it clear that I will be there every step of the way!   

save the date!

It's that time of year again when Kaelyn's Kure is in full swing getting ready for the Great Strides walk!  The walk this year will be on Sunday, May 20th at South Park.  Our team will be ready to take on the walk again as we walk for Kaelyn and Cystic Fibrosis.  Last year's walk, which was our very first Great Strides, was beyond successful!  Our team consisted of 85 walkers and we managed to raised almost $11,000 for the Cystic Fibrosis Foundation!  Those funds are what brings the science and research to the table for CF and adds years to many lives, which is so, so very important!  If you'd like to join our team for the walk, or donate in honor of Kaelyn, visit our Great Strides page:  http://www.cff.org/Great_Strides/JulieWeber

A big part of last year's success for our team was our fundraiser in April, Cheers For A Cure, which we will be hosting again next month!  It will take place on Saturday, April 28th and we will be holding the event at Milestone in Brentwood on Brownsville Road. 

We plan to once again have a Chinese auction and 50/50 raffle.  If anyone is interested in volunteering to provide any baskets, prizes, or gift cards for the auction, please let me know!  You can email us at kaelynskure@gmail.com or get in touch on Facebook.  Right now we are looking for any and all types of baskets - last year we had a garden basket, 2 wine baskets, a picnic basket, cooking basket, outdoors basket, and mixed drink basket.... along with several different prizes and gift cards.  We truly love the support of our friends, family and volunteers who help us to make this event such a success!

As the event gets closer and all our ideas start coming together, I will post more details.  :)
For now, please help us spread the word and don't forget to SaVe ThE DaTe!

Cheers For A Cure

Saturday, April 28, 2012

Milestone in Brentwood - Brownsville Road

Walk with Team Kaelyn's Kure
Great Strides for CF

Sunday, May 20, 2012

South Park @ 10:00am

what a feeling!

Yesterday marked a major milestone in the CF community as the FDA approved Kalydeco, the VERY FIRST DRUG to address the underlying cause of Cystic Fibrosis!!  This is a HUGE advance in the search for a cure for CF!  Although Kalydeco only benefits those who have the G551D mutation and are 6yrs or older (roughly 4% of the CF population), it represents true hope for the future of ALL who suffer from this disease.  Many doors have now been opened because of the science behind the drug, and a cure has never been closer in the history of Cystic Fibrosis!  Kalydeco dramatically improves lung function, lowers chloride levels and helps patients gain weight - all key problems in those with CF.

See the announcement:  http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/1-31-FDA-Approves-Kalydeco.cfm

A key point to remember with Cystic Fibrosis is that not all cases are the same and more than 1,000 mutations cause the disease to occur.  I'm sure you're thinking, "that's a lot of mutations", however those 1,000 mutations in the CF gene fall into six different categories or classes.  Understanding each of the six classes will hopefully allow researchers to develop treatments for each specific class.  Treatments that work for an individual will depend on his/her mutation.  This is exactly what the advancement with Kalydeco is doing - it targets the underlying cause of CF for the G551D mutation and restores health.  To get a full understanding of the CF mutation categories and classes, follow the link I have provided from the CF website:  Targeting Mutations that cause Cystic Fibrosis

It's amazing how much has changed in the CF world just since Kaelyn's diagnosis three and a half years ago!  To think back to my very first readings and research on CF when we got the phone call that she would need to be tested... reading "average life expectancy is 37 years" - the heartbreak we felt... to the feeling we felt yesterday reading the news of Kalydeco and the FDA's approval.  WHAT A FEELING!  A feeling of success and celebration in the CF community, and also a feeling of HOPE for the future... which one day I'd love to describe the feeling when I read, "We've found a CURE for Cystic Fibrosis!".  And we're getting close....

Thank you to all of you who have donated to, organized, or attended an event for the CF Foundation!  Your generosity and efforts prove that we can find a cure for CF!  A cure has never been closer, so please don't stop - continue to help and show your support... you're helping to save many precious lives!

Lastly, I wanted to share our 2011 Thank You Tribute video in honor of all those who helped and supported Kaelyn's Kure last year... our incredible success was because of each and every one of you!  Whether you walked, donated, came to any of the CF events, bought a t-shirt - THANK YOU!  Celebrate the success of this news as well, because your efforts are what made this milestone possible for the CF community.  You all have a special place in our hearts and especially in Kaelyn's.

Make a video - it's fun, easy and free!
www.onetruemedia.com

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!

thankful

I read a quote yesterday and I know it definitely touched base with me... I actually think it's one that we can all relate to at some point or another.

Through the up's and down's of life, it's easy to have those days where you wake up and nothing seems right - the "what if's" fill your mind.  What if I had a different job?  What if I didn't lose touch with certain friends or family?  What if I made a different decision?  The list could go on and on...  The truth is, there's always going to be doubts, things you wish you did differently, or situations that had alternate outcomes.  That's when it takes the power of opening your eyes in seeing what you do have.... and then appreciating it.  Remember, when you think you have it bad, there's always someone else out there who has it worse.

With Thanksgiving a week away, it gives me extra time to remember just what I'm thankful for.  For my wonderful husband and daughter, the 2 things that mean so, very much to me.  For Kaelyn's health over the years, I still feel I can't be thankful enough for that!  For family and friends who have been there through thick and thin, good and bad and are still right here by our side.  Everything else we have and enjoy in our lives is just an added bonus... which I'm very thankful for as well!

So what's missing then??  Sure I could probably come up with a few things... but when I take a look at all I do have, all the great people in my life, plus those who are gone but have touched my life, what's "missing" seems to not matter much.  Never lose sight of the wonderful blessings that surround you every day and always take time for what matters most to you in life... you should never be too busy for the things you truly care about!  :)

school days!

It's been just about 3 months now since Kaelyn started school and so far she's been loving every minute of it!  I love hearing about her day when she comes home and it makes me feel great knowing that she's in a wonderful environment and truly enjoying herself on a daily basis!

One of the best parts about Kaelyn's school are the weekly pictures her teacher sends us so we can see the things she's doing in school.  I decided to take a few minutes to create a post displaying some of Kaelyn's school fun that she's had since starting in August.  Enjoy!

getting closer!!!

So many amazing news headlines and stories have been popping up this month in the CF community - and amazing might just be an understatement... more along the lines of life-changing for a small percentage of those with cystic fibrosis!  This is the news that anyone who battles this disease on a daily basis has been waiting to hear.  I decided to break down all the stories I've read over the past week to highlight some of the key information as drug makers get closer and closer to new treatments for CF that could stop the horrible impacts of the disease.

So many of you who know Kaelyn and our family have reached out earlier this year to help us raise funds for cystic fibrosis, and while you know in your mind that you did a wonderful thing, you might not know just how big of an impact your contribution really is.  Sure you could do what I did - read all the news/information about what's happening on your own.  However, it might not all make sense to you - so here I go..... I'm by no means a scientist, but let me try my best to break down what's happening so you can see what a difference your help has made.

First off, no 2 cases of CF are exactly the same.  Cystic fibrosis is progressive and the progression of this disease along with the severity of it's symptoms vary from person to person.  While it's true the average life expectancy is mid-30's and some live well beyond those years, we unfortunately are still losing lives entirely too young.  I'm talking about children who still aren't making it to elementary school, teenagers who don't get the chance to graduate high school, and the list goes on.  How is that fair?  Is living a life to the age of 35 a long enough life for you?  I'm going to safely assume probably not, so why should we settle for it be a long enough life for someone with CF?

I've seen the destruction CF can bring to families, through the eyes of the others in the CF community.  It's devastating what this disease has done to some of these families and to the young lives that fought the fight and unfortunately lost their battle.  These children so weak, so sick but at the same time so very strong & brave and they are now in the hands of God, as an angel watching over the rest of us like Kaelyn.  I know every time I blow out the candles on my birthday cake, I'm wishing for a cure for our little lovebug and I'm certain Chad wishes for the same thing every year too.  We've said prayers over and over again to watch over Kaelyn and keep her healthy through the years.  Well it looks like some of the wishing and prayers are being heard...

Just last week on October 20th an announcement was made by Vertex Pharmaceuticals that the drug Kalydeco (vx-770) is finally under review for approval by the FDA.  This will be the very first drug on the market that will target the underlying cause of cystic fibrosis.  Currently any treatments CF'ers receive to date only help to relieve symptoms.  While these treatments are effective and prolong life, the new drug should be able to add decades of life over a short period of time!  How amazing, right?!?  This phase of the drug however will only benefit those who are 6 years or older and who have at least one copy of the rare G551D mutation.  Only 4% of the CF population have this copy, but that's approximately 1,200 lives that could potentially be changed in a dramatic way! 

HUH?!??  I'm sure some of you are saying that to yourself right now.  As some of you might remember reading or hearing me say before, cystic fibrosis is a genetic disease which has thousands of known CF mutations - G551D is just one of them.  Kaelyn unfortunately doesn't fall into either of the 2 criteria for the drug - she's only 3 and does not have a copy of the G551D mutation.  Her genetic mutations are DeltaF508 and P5L.  DeltaF508 is the most common gene mutation of CF.  The good news is, right now clinical trials are taking place to evaluate Kalydeco in combination with another drug (vx-809) that would benefit those with a copy of DeltaF508 - And Kaelyn has a copy!  It is their hope that with time they will be able to benefit ALL people with CF and this is a major step in that direction!

It's sometimes hard for friends and family to grasp the enormity of cystic fibrosis.  Most of the time with Kaelyn, no one would even know she was affected.  Right now, we couldn't be more thankful for her health and her pretty much symptom-free 3 years of life she's lived so far.  We know in the back of our minds though that cystic fibrosis IS progressive.  What's unknown is the path and rate of that progression.  We need to stop that progression so kids like Kaelyn can live long, healthy lives!

If you want to be a part of curing a disease that will give futures to many little kids, please continue with us in our fight against CF.  As I said in the beginning, life-changing things are happening right now!  Keep your prayers coming, we're getting closer!! 

tis the season for being sick

Cold and flu season are here again unfortunately. 

For most of us, getting a cold is no big deal.  Sure it sucks, but we all deal with it - the runny nose, congestion, cough, and sneezing.  The symptoms come, our bodies fight it off, and before we know it we're feeling 100% again.  For Kaelyn and other CF suffers, colds can turn into something more serious - lung infections.  Because CF suffers have a faulty gene that allows too much salt into cells and not enough water, a build-up of sticky mucus ends up being the result.  This sticky mucus builds up in the body's passageways, and at times when a cold or virus attacks, the body can't always fight it it off on it's own.   Repeated lung infections and inflammation of the lungs create irreversible damage and threaten the health of CF suffers.

Kaelyn's health is usually outstanding and more than we could ask for - however, she has already had her share of sicknesses this cold season and recently had a virus that she just couldn't fight off on her own.  Runny nose, bad cough with mucus, hoarse voice, reoccurring fever... which meant that for the first time in 3 years, it was time for antibiotics.  Penicillin antibiotics were prescribed and for the first week they seemed to be working well.  However this past Saturday, I started noticing small red bumps on Kaelyn's stomach and back.  As the day progressed, they increased in size and number so a call to the doctor was needed.

It turns out Kaelyn has a severe allergy to penicillin antibiotics.  She's doing fine though and all of the spots from the rash should clear up in about a week.  Her doctor said no antibiotics of any type for a while because Kaelyn could develop allergic reactions to other types while her body is recovering, and we definitely don't want that to happen.

Here's a picture of Kaelyn from yesterday:

what did you do last night?

Cystic fibrosis can be a very high maintenance disease to keep yourself or loved ones healthy.  For some with CF, daily routine includes several breathing treatments, CPT (chest percussion therapy), 40-50 pills/day, vitamins, high salt intake, or even lengthy hospitalizations.

Fortunately for our family, Kaelyn was diagnosed with atypical CF very early on in her diagnosis.  At this time, our primary concern is keeping her lungs healthy and functioning properly.  Most individuals with CF will suffer from both lung and pancreatic/digestive problems throughout their lives.  For Kaelyn however, her pancreas is fully functioning on it's own - meaning she doesn't require the high intake of enzyme pills to digest her food properly.  I'll never forget the day we found out that news.  Around 85% of the CF population is effected by digestive problems and poor growth, so it was a blessing the day we heard Kaelyn was pancreatic sufficient!  She's steadily been on track with her growth over the past 3 years and is currently in the 90th percentile for height and 50th for weight. 

Last night, Chad and I opened a new chapter of learning in our book of CF care for Kaelyn.  Last week she finally received her airway clearance vest for CPT rather than us administering CPT manually (by tapping on her chest and back).  Around the age of 3, kids are old enough to be fitted for a vest and at Kaelyn's last CF appointment she was fitted and sized for her little pink vest.

Learning to use the vest and how to care for it is pretty simple.  The vest itself consists of 2 layers, the outer layer which Kaelyn chose pink as her color, and the inflatable layer that fits inside.  This inner layer will rapidly inflate with air once the air pulse generator is turned on.  The vest will gently compress and release the chest wall which will loosen up any extra mucus that might be stuck in the bronchial walls.  As mobilization increases from the shaking of the vest, Kaelyn can easily cough up anything that might be making breathing difficult and keep her airways clear.  Keeping the extra mucus away from her lungs and out of her airways helps reduce the chance of infections, and ultimately less infections result in better overall health and hopefully staying out of the hospital to be treated for sicknesses.

So far, Kaelyn's been sick twice now since she started school/daycare.  Right now she's currently had a strong cough and cold for over a week and even broke out in hives last week.  I knew from the very beginning of her first exposure to daycare this year (as we all know too well to be the home of excessive germs) that she would probably encounter more sicknesses this year than she has her entire life.  We can only hope that with our care and the amazing treatments that are available to those with CF that we can keep her as healthy as possible.  :)

Kaelyn is required to get airway clearance treatments from her vest twice per day for 20 minutes each.  Last night was her first official treatment and she did surprisingly well.  She got through the first 15 minutes smiling, laughing and talking to us as we joked about her funny voice as the vest was shaking and doing it's work.  The last 5 minutes brought tears as the intensity increased, as well as the noise from the generator.  Every 3-4 minutes the intensity will increase until the full 20 minute session has been completed.  She got through it though, and I have a good feeling that once she gets used to her new vest and what it does, that she'll do just fine with treatments!  She's a tough little girl but it's just hard for a 3 year old to understand why she's even subjected to wearing a "shaky vest" (as she calls it!) in the first place....

"BREATHE EASY" 

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."

Outstanding Results!

I know it's been long overdue for me to post about Team Kaelyn's Kure and the success we had at our first Great Strides walk, but things have been pretty busy over the past month since the walk!

Overall, the South Park walk location raised over $120,000 last month at our walk on May 22nd!  Simply amazing!  What's even more amazing is that Kaelyn's Kure helped to contribute almost $10,000 to that grand total!  It looks like our team total came in at $9,933 - which is so awesome, especially since the average most new team's raise is approximately $1,500 their first year walking with Great Strides.

I feel so blessed to have met so many wonderful people who have reached out to support cystic fibrosis and Kaelyn.  I know as she gets older and realizes what CF is all about, along with the support she's had growing up, she will feel just as blessed that you all have been there for her since the day we found out her diagnosis.  To only be 3 years old and have such a strong support system will mean the world to her in the future.

The best part of the walk last month was seeing all the faces who showed up in their purple Kaelyn's Kure t-shirts to walk with us.  Our team was 85 walkers strong that day, and while most faces were familiar, we also had some new faces join our team - we couldn't be happier in meeting you and having your support!  Another amazing part of the day was seeing some friends whom we hadn't seen in a few years!  All in all, it was just a fantastic day!

TEAM KAELYN'S KURE 2011

To view even more pictures from the 2011 Great Strides walk, follow the link below and if you haven't already viewed and "liked" Kaelyn's page, please do!  We use it to keep everyone up to date on upcoming fundraisers and to help in continuing to spread awareness about cystic fibrosis!

More pictures from Team Kaelyn's Kure - Great Strides 2011:

https://www.facebook.com/media/set/?set=a.189689761078792.50532.174010899313345

Thanks again to everyone who, in some way or other, supported CF this year!  And remember, you can continue to support the foundation at any time, there's always fun things going on all throughout the year.

  

Keep in mind that your help has made you personally responsible for helping improve someone's life!  =)

Three happy healthy years... many more to come

May 31, 2008...
Three years ago, on this day, I was blessed with the most wonderful addition to my life - Kaelyn Leigh.



At 6lbs, 7oz - 19 1/2 inches long (born 2 weeks early at exactly 38 weeks) I couldn't ask for a more special gift.  Today marks Kaelyn's 3rd Birthday, and although it feels like I simply blinked my eyes and suddenly my daughter went from peaceful, innocent newborn to inquisitive, curious 3 year old... I've never forgotten to soak up every moment of change she's gone through as she continues to grow up.  From sitting up to crawling, standing to walking, first tooth, first smile, and first word - as a parent you just don't want to miss a minute of the many milestones in your child's life.


Each year that Kaelyn's birthday comes around, Chad and I are reminded of the day we became "mom" and "dad" to someone.  Being a parent is a blessing, and while yes, there are the tough moments when you're ready to pull your hair out and not quite sure if you can take another minute of crying, whining, tantrums, and not listening to a word you've said - the rewards most certainly out number the bad days!

I'd be lying if I said that because Kaelyn has CF it doesn't make us cherish special moments in her life even more.  And while we don't dwell on the fact that she has CF, it's still a part of her life.  We've been very fortunate and blessed for Kaelyn's health.  To most, you'd never even know she has health concerns because her health has been that outstanding!  It's something we smile about and thank God for every day as we watch her laugh, play and grow up.  While today we're celebrating a Happy 3rd Birthday in our home, we also celebrate three happy, healthy years and wish for many more to come!

HAPPY 3rd BIRTHDAY KAELYN!!  WE LOVE YOU!

  

Great Strides Walk Information

Family and Friends,

For everyone walking with Kaelyn's Kure this Sunday, you must be registered.  This includes ALL AGES, so kids too regardless of how young!  The foundation would like everyone to try to register online to save time on walk day.  You must sign up online by NOON today - otherwise you will have to register again on Sunday in person.  Follow the link below to register.  Click on "Join My Team" once you arrive on the page.

http://www.cff.org/Great_Strides/JulieWeber

Everyone is to meet in South Park inside the building with the big clock on it by the track and baseball fields.  If you still have not registered yourself or your kids, you can do so then.  If you pre-registered online, YOU WILL STILL NEED TO CHECK-IN at our team's table.  All tables will be labeled with team names - look for Patty and Marie at our table.  They will be taking new registration forms, donations, and checking you in. 

If you raised $100 under your own name for the walk, you will be given a ticket upon check-in for a free Great Strides t-shirt complimentary of CFF!  Patty and Marie will have everyone's info at the table and how much you've raised/donated.  Kaelyn's Kure team t-shirts will be available through myself or Chad if you have not picked yours up from us prior to meeting on Sunday.  

Please make sure you arrive at check-in by 10:00am.  After checking in, feel free to check out the gift baskets or take part in the 50/50 raffle.  These prizes will be raffled off before the walk begins at 11:00am.  Team pictures will be taken for each team participating in the walk, so be sure to stick around so we can find you when the time comes.

Our team will be honored for our awesome effort with a big customized banner at the walk!  All banners displayed at the walk represent the individual teams who raised over $5,000 as of April 30th.  Although all our funds still haven't posted to our team online yet, I believe that our team is closing in on $8,500 currently!  We've done such a wonderful job as a team for our first year being involved with the walk!  The efforts that everyone has put in to support Kaelyn's Kure and CF have truly touched our hearts!    Since CF research is not government funded, your donations matter greatly!  Without your help, Kaelyn wouldn't have the treatments she needs to stay healthy!

Kaelyn's Kure was also chosen by the CF organization to cut the ribbon before the walk begins!  This honor was decided because of our outstanding efforts during our first year with Great Strides!  Chad, Kaelyn, and I will cut the ribbon, and then Kaelyn's Kure will lead the walk on Sunday!  :-)

Don't forget, after the walk food will be provided too!  We will have water at our team table as well as pop and other drinks.  We're looking forward to the walk, and also seeing some old friends we haven't seen for a while!  Thank you in advance to everyone who's planning to come out this Sunday!  If you have any other questions, please get a hold of us.

PS - A friendly reminder about smoking: 

We all know smoking is bad for you, but for someone with CF, it's a fast track to irreversable lung damage, and this includes second hand smoke!  We have to be careful where we take Kaelyn, keeping in mind if there will be smokers there or not.  The key to keeping Kaelyn healthy and alive for as long as possible is by protecting her growing lungs.  The same goes for all the other CF'ers who will be at the walk.  Please refrain from smoking at this walk or around the other teams who will be participating.  It's so important to all of us and to the lungs of the CF individuals!

Watch our video!

Make an on-line slideshow at www.OneTrueMedia.com

Truly Touched...

The generosity of others towards CF throughout the past several weeks has been simply AMAZING!  We are blown away by the huge support system we have from family and friends - AND, what's as equally touching and amazing is the kindness of complete strangers who have been reaching out to Kaelyn's Kure and CF.

The Cystic Fibrosis Foundation is the world’s leader in the search for a cure, and the foundation funds more CF research than any other organization.  Nearly every CF drug available today was made possible because of foundation support from people like you!

Right now, SO many exciting things are happening in the CF community and I encourage you to take a look at the 2 articles below.  By supporting CF, you're helping to make these types of research opportunities possible and giving hope to the 30,000 kids and young adults fighting this horrible disease!

http://www.cbs59.com/story.cfm?func=viewstory&storyid=96698

http://news.yahoo.com/s/livescience/20110512/sc_livescience/teendiscoverspromisingcysticfibrosistreatment 

Kaelyn's Kure has met and EXCEEDED our goal in our very 1st year of having a Great Strides team!!  We set our 2011 goal at $5,000 and today we just surpassed that goal - currently coming in at $5,055 in online donations alone!!  AMAZING!  AND this total doesn't yet include the Jose & Tony's fundraiser funds yet.  (It takes a lengthy amount of time, especially in the month of May for funds to process and post online.)  But, with that being said, we are currently looking at a team total of close to $8,000 and we aren't done yet!!!  Wonderful job so far everyone - can't wait to hear the official total at the walk!  We can't thank you enough for being on our team!  Whether you're walking with us next Sunday or you're one of Kaelyn's Angel Walkers (you can't make it to the walk, but will be there with us in spirit), our team wouldn't be this huge and this successful without each and every one of you! 

Our 1st year's success with Great Strides has landed us a surprise honor on the day of the walk, but we'll save the surprise for next week!  For those who are unable to make it, no worries, we'll fill you in and post pictures from the day!  =)

It's still not too late to sign up as a Walker or Angel Walker - there's still a week left until the walk and Kaelyn would LOVE to have you on her team!  Click on the Great Strides image below to join the team or to check out our team's total raised to date!  See you all next weekend - fingers crossed for NICE weather, I know it's hard to come by in the city!  (Kaelyn's Kure t-shirts will be in next week if you ordered one)

xoxoxoxo

 

Almost Puppy Time!

We've recently received news that next week we'll be able to make our puppy selection official!  Through the weeks of watching the 7 pups grow, we've really liked the female with the purple collar.  More than likely she will be our official pick and our Simone!

Simone will be Kaelyn's first puppy, and besides her fish, this will be her first high maintenance pet!  Chad and I got a puppy together back in 2007.  He was a Vizsla named Attila and we couldn't have been more excited to have him as a part of our family.  Unfortunately, over the months of him being home with us, he slowly began to show signs of aggression.  First over his toys, then food, and lastly our furniture.  It was scary, and at the time I was pregnant with Kaelyn.  I had never been a around a dog who acted with such aggression the way Attila did.  I knew in the back of my mind we wouldn't be able to keep him, especially with a new baby coming into the household.  Chad wanted to keep him so badly - more than anything he had wanted a dog, as our pet and his hunting companion.  As much as we didn't want to return him to the breeder, I knew he had to go.  I was scared to be around Attila by myself.  We had to take away his toys because if he had one and anyone would walk past him, he would show his teeth and growl.  He would try to snap at us while he sat on our furniture if he thought we were going to try and make him get down.  This was not the type of dog I wanted around Kaelyn, and I think any parent would agree!  The aggression only progressed, and at the time as we drove him back to the breeder, we didn't understand what had happened to cause his worsening aggression towards everyone.

We were sad dropping him off with the breeder and driving back down the road knowing we wouldn't see him again.  It wasn't until a few weeks later that Attila's breeder contacted us to let us know they made the decision to put him down.  Attila was suffering from sudden and progressive kidney problems which would only continue to worsen with time.  He sadly was only a little over a year old, but we all finally understood his aggression was more than likely a result of the pain he was experiencing.

I knew that I didn't want another dog for a while, and for some, Attila's actions may have been enough to never want another dog as a pet again.  It's been a little over 3 years now since we've had a dog, and while part of the wait was us simply moving on from Attila and his behavior, the other part was us wanting to take the time to devote to being parents (especially after learning of Kaelyn's CF news shortly after birth).  We also wanted to give Kaelyn some time to grow up - this way she can experience the excitement of getting her first puppy!  We can't wait to see the smile on her face and hear her laugh when she sees the puppies!  We're looking forward to Simone bringing Kaelyn and our family much unconditional love and many memories over the years.

Our puppy is 5 weeks old currently, and will be able to come home any time after May 25th.  The pups are being raised in Eastern PA out near the Philly area, so a little road trip to start off Memorial Day weekend is in the plans!  We'll keep you posted with news and pics of our newest family member in the weeks to come!  :)

April 2011 Braque Francais Puppy Litter 

Growing Up...

Kaelyn's Kure Walk T-Shirts

The Great Strides Walk is quickly approaching and we couldn't be more excited to participate in our first walk!  Chad and I are taking orders for our team's customized t-shirt which will feature our team name in white font on a purple shirt.  We choose purple since it's the CF awareness color!  :) 

Please let me know ASAP if you'd be interested in a shirt (and a size) for the walk on Sunday, May 22nd!  If you are unable to make the walk, and would still be interested in purchasing a shirt in honor of Kaelyn, please let me know!   Shirts will be approx. $5.00-$6.00 each.  We are also checking on the availability of shirts in kids sizes as well for anyone who might interested! 

We hope to get as many ppl as possible on the team to wear our customized team shirt in honor of Kaelyn!  I will be posting more walk information over the next 2 weeks, so check back for updates!  We look forward to seeing everyone at the walk!  Thank you all for your efforts leading up to this day!  :)  

Love, 

The Weber's

First Fundraiser for Kaelyn's Kure is Big Success!!

Thank you!  Thank you!  Thank you!

We just can't seem to say it enough!  Our first fundraiser which took place last Thursday (4/21) was a big success!  I'm blown away by the amount of people who were in attendance - we packed Jose & Tony's pretty much to the max that night!  The help, support, and generosity from everyone who took part in the event really touches our hearts and our family deeply appreciates all that was done to make the event possible.  

Whether you were able to make the event or made a donation towards it - THANK YOU!!  We had so many wonderful raffle prizes, gift cards, and baskets to give away... actually way more than we had expected!

We hope that everyone enjoyed themselves as much as we did, and we're hoping to do an annual fundraiser for Kaelyn's Kure every year before the walk!  We raised $1,150 in tips alone last Thursday, and brought in an additional $1,650 from the raffles!  Really, really fantastic - just shy of almost $3,000 for Team Kaelyn's Kure and the Cystic Fibrosis Foundation!  If you've been following our team's total on the Great Strides page, you should see it jump to over $7,000 within the next few weeks once all the additional money we've collected recently posts to our team!

I'd like to give special recognition to all those who dedicated their time or made a donation to our raffle:

Jose & Tony's - Maggie O'Neill and her cousin for bartending the event, along with Kelly and Lam for helping with all the ticket sales throughout the night.  The night wouldn't have been possible or as successful as it was without your help!

Citywide Garage Door Co.

Gander Mountain/Jeff Fite

Comfort Inn/Jack

Eat N Park

Snap-On

Sergio's/KaraKerns

Subway

Coors Light

Jackson's

Don Bell

Gene Ciavarra

Kristin Rost

Loni Brazen

Patty Weber

Jen Verscharen

Jamie Burgos

Jessica Nelson

Cindy Cochran

Melissa Johnston

Ashlee Starr

Rendie Settles

THANK YOU ALL AGAIN!  (sorry if I missed anyone!)  And thank you to everyone who took a few hours of their evening to stop in and join us to make a difference in the lives of all those affected by Cystic Fibrosis!  Your donations truly do make a difference in the CF community!