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?! :)

blessings

Today I am praising God… I am praising him for Ethan.  Ethan turns two today!  It’s hard to believe that two years ago today Sean and I welcomed our first little boy into the world.  So today I am not only praising God for my son,  I am praising God for his health.  Yes, his health.  I know it’s hard to believe because Ethan has Cystic Fibrosis and while it was devastating we have dealt with it and moved on.  In the last two years I have learned to put my trust and hope in the Lord.  And what a blessing this has been for me.  I feel incredibly blessed by Ethan’s health.  Some of you may think I am crazy because he has had a few setbacks.  Last May he started growing pseudomonas which stinks but he is controlling it well and showing no symptoms.  I am so thankful that it’s still either not showing up or growing “few”. 

Thankfully Ethan has not had many complications because CF can be far worse.  I pray daily that his health would continue to stay and I praise God over and over for this. 

So today is not only a day of turning two it’s a day of praising God for our many many many blessings.  I am overwhelmed with joy.  And two years ago when we got the diagnosis I never thought I would be feeling so blessed.  I am once again proven wrong!   What an amazing way God has used CF to grow me. 

So the birthday party is Saturday and there will be lots of pictures of our Little Einstein party theme!  When I ordered all his Einstein party supplies he was OBSESSED with them!  Now he has moved on to Elmo, go figure!   We can’t wait to spoil him with sugar, gifts and love.  J   Today he is getting a cupcake at grandmas with his friends and then again tonight with Sean and I.  Saturday I have ordered a cake with rocket on it and I cannot wait for this cake.  It’s the single best cake I have ever had!  The cake lady is actually the lady who did Sean and I’s wedding cake.  She is extremely talented.  The smell of her cake fills the whole room.   Ok now my mouth is just watering J…  Ethan rarely gets sugar so I am sure he will be spinning circles, which is usual the reaction to sugar.  Oh boy! 

Ethan is also getting a sandbox for his birthday.  I know a lot of CF parents consider this a huge no no… but honestly he is a boy and we take him to the beach.  It has a cover to keep cats and rain out.  Ethan is very good at not putting things in his mouth and we always wash up after playing outside, and to be honest what’s the difference between a sand box and running and falling in the mud, which he did just a few days ago.  I figure, he is a boy… it’s going to happen.  I want him to play outside and run around and exercise his lungs.  Now if he was a little boy that constantly put things in his mouth and his fingers I might be more concerned.  I must admit when I was picking up after bed and I picked up his grass /dirt stained jeans I felt happiness in my heart because I have an active little boy who LOVES to be outside all the time. 

Well enjoy the day! Remember to celebrate your blessings today!

Our family has been thinking of creative ways to raise money this year for great strides.  Reason being is its hard to keep getting consistent donations from everyone, every year.  We have already hosted a chicken bbq that brought in $800.  This saturday at the local maple syrup festival pancake sausage breakfast we are going to have a booth set up to sell homemade noodles.  Seans family and I have been working really hard on these.  It was a lot of fun for Ethan too.  He helped roll and pat the dough!  These noodles are DELICIOUS!  I am sure we are going to sell out.  

Here are a few pics to enjoy of the noodle making process!!  We are so Martha Stewart!  If youre in our area come buy some!

Lots of others helped on different days but of course I forgot  the camera. :)

I hate CF but.....

 I HATE CF but….

It has strengthened my faith

It has taught me how to pray out loud

It has drawn my husband and I closer

It has taught me to love my sons so deeply

It has taught me that I am not in control, God is

It has given me the chance to sit everyday with Ethan during treatment for special time.

It has taught me to be thankful everyday

It has shown me how amazingly blessed we are with a great support system of family and friends

It has given me CF momma/daddy friends; I don’t know how I would do it without them

It has taught me to live life to the fullest

I hate CF but…maybe this was a blessing in disguise….

Ethans clinic

Ethan had clinic today and much to my surprise he gained weight!!  I was so happy... We have been trying since he was very little to get him to the 50th percentile but he has always been stuck in the 25th.  Well today he is showing improvement in that, he is now 35th! I think much of it is impart to giving him an ensure every night before bed.  I recently just changed from pedisure to ensures because I found some weight gain shakes that are for adults and since he is nearly two that's ok.  These babies have 350 calories in them!

He also had good sounding lungs.  He did so well when the doctor wanted to listen to his lungs and even said ah when she wanted to look in his mouth.  He was just loving the attention from everyone there today. 

There was a little fluid on his ear but nothing thats causing a problem.  Our doctor also said she was very impressed with my request several months back for hypertonic saline.  She said most parents do not understand that sometimes adding a medication can be a good thing and that being aggressive is key.  I had asked to start this after reading several other CF children's success with it.  She said that most parents have bad luck with the saline because the kids fight a little bit but once they get used to it, its very helpful.  I am not one of those parents who lets the child call all the shots and now Ethan will sit and do his treatment on his own and even hold his own mask without a fight.  Although sometimes he sets it down a second to raise his arms above his head to yell blast off!  (We watch little Einsteins during treatment.)  I figured thats ok. 

Afterwards our treat was to go to walmart and pick out a small toy.  Ethan picked out a little truck for doing so well.  Then we met my grandma for lunch at applebees were he indulged in a chicken strip meal.  He of course ate almost all of it.  We always try to do something fun and positive after clinics for a positive spin.

All in all it was a great clinic... and I am a happy mama!

Liam is 3 Months!

Just last week my littlest man turned three months old!  A day before he was 3 months old he rolled from stomach to back.  He is growing up way to fast if you ask me!  He is so close from rolling from back to stomach.  Liam is so much fun.  He is really starting to show his little personality.  His fav thing is to watch his big brother or his mobile.  He talks and coos like crazy.  Its hard to believe he is three months old already.

Liam is exceptionally large for his age. 98th percentile!  Which is crazy!  Ethan is only the 20-25th and its a struggle to keep him there.  Liam is nearly ready for 6-9 months but i am going to keep him in the 3-6 as long as possible. He has so many clothes that he hasnt gotten enough wear out of yet. I am thinking that soon they will be sharing clothes... and diaper sizes hahaha. 

Everyday I praise the Lord for my boys and their health.  They are both such an amazing blessing in my life.  I am so grateful for them.  Its so neat to watch them grown and turn into awesome little boys!