Who is ready for the 4th Annual Cruise for Cystic Fibrosis presented by Ares Fitness Club?? We will be cruising on the SS Lillypad on Lake Wawasee June 21st from 7-10pm. The cost is $40 and that includes free keg beer, DJ entertainment, a raffle ticket (with the option to by more), and a great cause. Tickets are on sale now and selling fast! To reserve your place on the SS Lillypad please click the link below

Thankful November

Wow has it been a LONG time since I blogged.. that just goes to show how busy I am... The Clem Clan has recently moved to a new house, work has been very busy and my boys are non stop!!

I have been reading what everyone is thankful for on a day to day basis.  Everyday I thank the Lord for so many blessings... We are truly BLESSED!  I didnt want anyone to think I am not thankful and I want to participate in the daily thankful posts but just do not have the time so here it is, all in one shebang!

1. My Faith, Without my faith and relationship with God I would be lost in this crazy world.
2. My husband Sean.  He keeps me grounded when i have my freak out moments stressing about silly things
3.  My family.  They are so supportive and helpful... I love them
4. Modern Medicine - E is doing so well thanks to all of the advancements.  I also look forward to upcoming medicines that will treat cf
5. Friends.  We are so blessed with a great support system.
6. Chocolate...  This is pretty high on most girls lists I believe
7. A warm home
8. A job for both my husband and I
9. Ethans Vest... wow i cant imagine doing Manual breathing treatments
10.  Ryan and Nikki Bradley... they are our BFFs :)
11. TWO cards that run and get us to jobs, church, doc apts, grocery store
12. A full pantry that i can feed my boys from
13.  The ability to fill my pantry.
14. An amazing small group at church
15.  The ability to Praise my Lord without being punished
16. All of my cf friends i have made... WOW if there is one awesome thing about CF its all of my friends i have made!!!  Some of you are my closet friends
17. Close girl friends... Liz Hathaway, Nikki Kiefer, Leanne Harkenrider... i think i talk to you girls everyday!  One is a CF connection!!
18. Stacey and Alysia... you girls are so fun.. i love girls nights out
19. My sister... Lydia is such a big helper with the boys and watching them on Thursdays.
20. The ability to run/bike... its my oulet
21. My stinking adorable boys!!!
22. The awesome swingset that was giving to me by Seans boss.
23.  A new neighborhood with great neighbors
24. DVR -how would i survive without it... i record all of E's fav shows for treatment time
25. Tommy running across the country for CF and starting more than just miles
26. The CF Foundation fighting hard for my boy
27. All the girly things a mommy of 2 boys needs
28. Sunny days
29. Ice cream
30. Jesus Christ :)

I am sure i am forgetting something or someone.. Blessing are all around me... :) Happy Thanksgiving!

Guys and Dolls Gala

This last weekend Sean and I attended the Cystic Fibrosis Guys and Dolls Auction Gala.. What a great time!!  I had the great privilege of speaking... to all 600 guests!  I was a little nervous, but wanted to post my speech for people who were not there.  I really appreciated the opportunity to tell Ethan,s story and educate people about CF.

Good Evening,

My name is Laura Clem.  I am a mother to two wonderful little boys.  My oldest, Ethan, is 2 and half, and my youngest, Liam is 10 months old.  When Ethan was two weeks old we were told he most likely had Cystic Fibrosis.  My husband Sean and I were completely shocked as we had no one in our family with CF.  And so began our journey into a world completely unfamiliar to us.

My husband had absolutely no idea what Cystic Fibrosis was, i knew a little about it and instantly jumped to a million conclusions, that we late learned were not true.  We went home and tried to learn as much as we could about this disease.  

In 2009 the state of indiana started testing for Cystic Fibrosis in the newborn screening.  Ethan was born in April of that year.  We are grateful that we caught it right away so that he could get the earliest start possible on treatments. Prior to the newborn screening some children would go years without a diagnosis.  Ethan was diagnosed at just 2 weeks old.

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.

Ethan is like any normal little boy.  He loves riding bikes, running in the yard, and playing with tractors.  He also loves to have tickle fights and goofing around.  During the week Ethan goes grandmas for daycare with his friends, On Sundays he participates in his sunday school class where he learns songs and dances.  

Sean and I hear from lots of people meeting ethan “he doesn't look sick”  My response is, he isnt sick, he is doing great.

Ethan wakes up every morning at 545 to start his breathing treatments for the day.  He spends 30 minutes wearing a vest that pulsates to break up the mucus while inhaling three medications.  In the evening he has to repeat everything only adding one more medication for a total of four.

Ethans inhaled medications include, albuterol, hypertonic saline, Pulymozyme and tobramyacin.  With every meal ethan has to take 3 pills with applesauce just so he can absorb nutrients, fats and proteins.   

Some mornings and evenings are harder than others.  Most times Ethan can do his own breathing treatment while watching his favorite show, bubble guppies.   Often I will ask ethan if he is ready to do his breathing treatment.  He will respond  with an adorable “no thank you mommy” and a grin.  There are times where he gets upset during his treatment and I can understand why.  Some of the medications burn his nose and taste bad.  The vest squeezes him tightly making it very uncomfortable.  I had the opportunity to try on a vest at a CF conference and could not stand it for more than 1 minute and he does 30.  Ethan is my hero and is the strongest child i have ever met. 

So yes, Ethan is like any other little boy, he just has extras he has to do to stay healthy.  We encourage him to live a normal life, with CF as something that is just a part of him

We feel that Ethan has Cystic Fibrosis for a reason.  We will fight for him and a cure non stop until its found.  The amount of support our family receives is amazing.  We feel so incredibly blessed to have a support system that surrounds us.  It is evident at events like tonight where we are surrounding by friends who love ethan and fight with us.  My sister is one of the dolls and i could not be more proud of her and her commitment to helping cure her nephew.

Attending events like the guys and dolls gala is so important.  The foundation has committed 75 million dollars to fast track potential new drugs to treat the defect.  Without events like tonight, this would not be possible.  There are so many promising new drugs in the pipeline that need your help to get through trials and to the FDA for approval.  90 cents of every dollar donated goes directly to helping find a cure for this disease that takes children and adults to young.  CF isnt like other childhood diseases.  It is considered an orphan disease.  Which means the Government does not provide money for research.  The foundation operates solely off gifts from people like you.  I hope you will consider making a donation tonight that is 100% tax deductible. Help us make CF stand for Cure Found for Ethan and the 30,000 others in the US who live with it.

We were surrounded by great friends at this event.  Our friends Ryan and Nikki drove down with us, and Rayna and her bf Alex met us there.  My roomie from college LeeAnne was a co chair of the event and my sister a doll!  So blessed by supportive family and friends!

CF Walk

Well the CF walk was a success!!  Most of you probably do not know that I am the chair of our local walk.  The CF Foundation caught wind of my determination to cure CF and contacted me last year.  I had a lot of help from the foundation but also did a lot.  So I was happy when it was over and done with.

We had a lot of fun this year...

Ethan led the walk...

He is so happy in this picture... Almost like he knows all 70+ people on team Clem Clan where there to support him because they love him.  I also cant help but think.. he is so naive to the harsh realities of CF. We were walking so hopefully he will never see that but I still think about it.  I love my little boy so much and fight so hard for him.

I have said it before and ill say it again.. we are so blessed by an amazing support group!!!  So many people showed up.  We had about half the walkers at the south bend walk on our team.  Clem Clan also raised nearly $9000.   We will for sure be over $10,000 once we have out Cruise for Cystic Fibrosis on June 3rd, which is almost sold out!!!  South Bend had over $20,300!!

Here is a group shot... we have an awesome/good looking group dont we!?

Thank you to everyone who came out!!!  

Special guest star!!   Swoop!

This time of year

This time of year is very overwhelming for me... for several reasons... One I am in the process of taking over running the local great strides walk with the guidance of the foundation... Next year its all me.. So this year I am learning everything that needs done on walk day..  Also this year I had the idea to do a "Cruise for Cystic Fibrosis" on the lake I grew up on.  We will be cruising in the evening with food, soda and beer all to a dj.  We have been busy rounding up raffle prizes and getting everything organized.   I am very excited about both, however, there is a lot to do!

Mainly this time of year is overwhelming for me because its a constant reminder of what we deal with daily.  Most of my facebook friends are CF patients or parents..  I am constantly bombarded with sad statistics, videos and pictures.  Its a constant reminder that Ethan will struggle with CF and we have rough roads a head one day.  Yes I am thrilled by the support and love that is outpoured for us and Ethan... but some days, this time of year, are hard.

april 27th, 2009

Everyone dreams of having their first child… What that child will be like.. What their hopes and dreams are for that child.. What they will do in sports, school.. What kind of person they will turn out to be…

When we found out we were pregnant with Ethan we were BEYOND excited.  We had been trying for 9 months to get pregnant.  We found out when I was 20 weeks pregnant that it was going to be a boy.  Sean and I were both HUGE into sports and we were so excited to possibly have a little athlete on our hands.  The big day came and Ethan arrived.. He was so tiny and beautiful.  Labor went well and I recovered very well.  We took him home and just enjoyed him.  We had some rough nights but who doesn’t with a new baby….We thought we had this “healthy” little boy.  Life was good.

Ill never forget the day…April 27^th…. We had just taken him to get his newborn pictures done and on our first outing as a family to pizza hut for lunch. It was so much fun.  The next stop on our trip was his 2 week check up.  The doctor came in and was looking him over and asking strange questions like “has he been coughing a lot?” etc…After he was done examining him he said “Well Ethan’s newborn screening came back showing two mutations for Cystic Fibrosis”.  Those words changed our world in an instant!  I instantly burst into tears as I knew what Cystic Fibrosis was.  Sean on the other hand had no idea.  A million thoughts instantly went through my head… He will only live to be 20ish, he will never play sports, he will be in and out of the hospital, he was have a sickely life.. You name it I thought it.  We learned later they weren’t true.

I hate CF… with a passion.  Currently the life expectancy is 37.  How would you like to hear that your son might not live into his 20’s?  That he will most likely have lots of health issues and face a possible lung transplant?  How would you like to see your son constantly being poked with needles for blood draws, being held down while he is screaming for this?  Witnessing what Ethan goes through breaks my heart… No, it SHATTERS my heart.  No child should have to be shaken in a vest for over an hour min a day… How do you tell a toddler.. I am sorry you can’t have that snack because you haven’t had enzymes…

I have learned how extremely blessed I am by an amazing support system..  I have friends from childhood stepping up, donating, raising money.. I have new friends who jumped right in and are doing the same.  No donation is too small, especially when it’s helping to save my son’s life.

Please click the link on my facebook page to donate today.

Easter boys

C

Can you tell they are brothers?! :)