Nelson's Chicken Fund raiser

This last weekend we teamed up with Nelson's Golden Glo chicken to raise money for the Cystic Fibrosis Foundation.  Nelsons is amazing chicken!   The smell of it cooking is enough to make your mouth start water.,... mine is just thinking about it.  The owner of the company has been selecting not for profit organizations to team up with to help them out.  My father in law is a cooker for them part time and asked if we could do it for the CFF. 

It was a big success!  We sold all 416 halves that were cooked and almost all of our pit taters.  We sold from 10-3 and around 130 when we had 200 halves left we were getting nervous.. But the people just kept coming.  Some said the smell of the chicken is a sign of spring!  It was a very cold day, but we brought in around $800 for the CFF 

I recruited my cousins to help and they were so energetic and did a great job.  Gwen was doing cart wheels by the road and yelling the whole time with her brother Wade.. And Sydney helped run to cars and take orders.  It was a great day... Just cold :)

Thank you to everyone who helped... Wanda, Ken, Karen, Melanie, My Dad, and Donna!
My poor dad barely made it.. he went into the ditch on the way down but made it just in time!

CF Wine Opener

This weekend we headed to Indy for the Cystic Fibrosis Wine Opener.  It was an amazing time and I was reminded again but how incredibly blessed we are to have such an amazing group of friends to support us.  I am not sure how we would get through this without our family and friends.

I also had the privilege to meet a few fellow CF mommas and CF patients.  I spoke to one gentleman who is 42 with CF and a woman who is 37 with CF and just had a double lung transplant.  I, of course, had to pick thier brains.  They both agreed that the best means of therapy is manual CPT and exercise!  The gentleman also suggested cutting out milk that that really helped him a lot. However, at this point it doesnt seem to be affecting Ethan and its a major source of calories for him.  They also told me to let him be a kid and let him run around outside and play in the dirt.  As a parent of a CF child its so easy to want to put them in a bubble to protect them, but thats not the life a child should have.

At the wine opener we had amazing food and samplings of great wine.  I even had a rhubarb wine which was very good!  Thank you to our friends who support us and our cause

MIA

Well it didnt take long for me to get so busy with working and being a mommy that i forgot all about blogging! :)  Days are CRAZY around here... here is  my daily schedule

545 I wake up (after being up twice throughout the night with Liam) and shower.
600 i wake up ethan and take him directly to the vest where he gets shaken right away... while he is doing his treatment i frantically try to get ready and nurse Liam.
645 walk out the door
7 arrive at grandmas where E gets breakfast
730 arrive at work where i stay till 4...
420 pick up kids come home..
500 start breathing treatment.. while fixing dinner
545 start dinner
630 dinner
700 bath time
730-pedisure before bed
We squeeze in play time
800 bed time!
By the end of this i am exhausted!!!!  i try and catch my shows and hit the hay early... all to start it over again.  It may seem hectic and it is... but i love being on a schedule.. I am so thankful for everyday and my amazing boys.. All three of them :)

Things are going well for all of us!  I am back to work at full time.  This weekend we are heading down to Indy to the CFF wine opener.  This is a fav event of ours.  We cannot wait to spend time with some of our closest friends! 

Our go to meals

Ethan is like every toddler.. he has his days maybe weeks where he wont eat.  When we have those days in a row of him not eating we do some of these recipes.. Very easy and soooo good!

Chicken casserole...
1 can of cream of chicken
1 can of water
1 can of rice mixed
1-2 cups shredded chicken,
bake at 350 for 20 min until rice is done. top with chedder cheese

Tater tot casserole...
1 can of cream of mushroom
1 can of water
1 can of rice
mixe together
add 1lb of browned hamburger and mix
top with chedder cheese and then tater tots.
bake at 350 for 20-25 min

Nacho Bake
1 pkg of shells and cheese
1lb ground beef of chicken
1 package taco seasoning.
3/4 cup water
3/4 cup sour cream
3/4 shredded cheddar cheese
3/4 salsa
1/2 smashed tortilla chips
make mac and cheese
brown meat and drain... then add taco seasoning and water
stir sour cream into mac and cheese.

spoon half of mac and cheese into 8" pan, top with layers of meat mixture, half of the cheese and the remaining mac and cheese. cover
bake at 400 for 15 min, top with salsa, remaining cheese and crushed chips and back uncovered for 5 min

Chicken Casserole
2cup chicken
1c cream of chicken soup
1 c dairy sour cream
1 carrot grated
1 tablespoon chopped onion
1 8oz pkg of herb seasoned stuffing mix
1/2 cup (1 stick) butter, melted
combine first 6 ingredients, mix stuffing mix and melted butter

In lightly butgter cass dish spread 1/2 of chicken mix, top with half stuffing mix and repeat layers until gone ending with stuffing mix
bake uncovered at 350 for 30 min

All 4 of these are favs of ours and Ethan always eats more than an adult!  love these... :)

Working and being a CF momma

I think that every mom's dream (well almost) is to stay home with their children so that someone else isn't raising them.   And when you find out your child has special needs that is even more heightened.  I went back to work this week after my maternity leave for my second child.  It was very hard to leave Liam.  Ethan is almost two and he is getting easier.  However, I will never forget when I went back after he was born.

We were not sure if Ethan had cf yet but we were pretty sure.  I returned to work and it was insurance renewal time.  In this meeting I learned that Ethan and I's deductible was going from $500 to $4000.  It was the end of June and he had an appointment scheduled for July 1st, conveniently when his deductible was sky rocketing!  I had to call and beg the clinic to move him up a day earlier to June 30th because at this point we were pretty sure he had it.  His fecal test came back with a score of 9 when it should be well above 200.  I wasnt ready to foot the bill for prescriptions that very next day. 

Every time Ethan is sick it pains me that I cannot be home with him to do his four treatments a day.  Fortunately we have the next best thing... Grandma!  And she takes his CF just as serious as we do.  Thank goodness!  I cannot imagine having to go to work and leaving him at a daycare where they half way do his treatments, because lets face it, its not nearly as important to them. 

I have to work because I carry the health insurance for our family.  Sean would carry it but he will be changing jobs this spring and it will not have benefits right away as its a new start up company that my brother is doing.  Luckily Max realizes the importance of good insurance and me being home so his goal is to have it soon. 

My first week back was ok.  I am not going to lie, it was nice to be back because Ethan is getting his cuspids and has been an emotional wreck the last three weeks.  I am talking hanging on my leg constantly crying and just beside himself.  So it was a nice escape.  However, my heart is here and I miss my boys.  I am so envious of so many of my CF momma friends who can stay home and be with thier children.  But our family story is a little different. 

I was also offered a promotion that I will start transition to this fall.  I am very excited for this as I will be a supervisor again.  I am a "natural leader" as some have said :) so this is a great fit for me.

My house is a wreck and I am completely and utterly exhausted.  Liam still wakes up every 3-4 hours so if we time it right I only wake up twice to nurse but waking up early and getting both boys ready, fed and E's treatments is A LOT.  It takes me two hours to get them all ready and out the door in the AM.  Fortunately I am back right now at reduced full time of 830-4 and then off at 1230 on Friday.  I use Friday afternoons to clean and get groceries.  Mommy needs some time for her self! Especially after working a full work week.

Our new addition

Recently Sean and I welcomed our new addition to our family, Liam Elliot.  I found out that I was expecting Liam on March 26th, 2010.  I was so excited that I didn't even wait to tell Sean in person, I told him over the phone.  We were both pretty sure I was because I was 4 days late.  I hadn't taken a pregnancy test yet because I was on jury duty for 3 long hard days.

I was instantly so excited.  Then when it started to sink in I started getting a lot of anxiety.  I was so scared about him having CF.  Sean and I had been praying every night and more that any future children we had wouldn't have CF, and lots of family and friends were praying the same.  It was always our dream to have a big family.  We always thought have two and adopt two.  With Ethan's diagnosis we weren't sure what we would do.  So after it sunk in I would have times were I was so excited about another and then scared to death about having another and not for the normal reasons people are scared of having two.  We aren't like my friends, we have to think on a much more serious scale.  I often find myself sort of envious of friends who can just go about having children without worry if their next will have a life threatening illness that effects every aspect of their lives.  I know everyone has different problems, but looking from the outside in, I wish it was that carefree for us.

I inquired about getting CVS testing done, this is done around 10 weeks but is much more risky than an amino. The genetic counselor suggested an amino because abortion is not an option for us.  Aminos are virtually risk free now and CVS is much more risky.  So my sister took me for my amino when I was 14 weeks pregnant.  (Sean didnt go for fear he might pass out, hahaha.)  This was about the weirdest thing that i have ever had done.  First she gave me a HUGE numbing needle that hurt incredible bad, then she took out what had to have been a needle the size of a bic pen and shoved it through my stomach.  At this point I was totally numb but I felt a lot of pressure then heard a pop.  I have a pretty strong stomach but I could feel her moving the needle around and  nearly had to throw up in the trash.  I think that my sister secretly liked watching it, payback for the years of torture growing up when I picked on her maybe.

We were told we would get the sex of the baby in a couple days and then find out about CF the following.  Well she was wrong... We got the sex back the following week and didnt find out about his CF results until 5 weeks later!  I was going CRAZY!  On July 19th I was celebrating my 28th birthday and I saw the doc office calling me.  My stomach nearly flipped, I wasnt sure I wanted to answer it and have my birthday ruined... but I did and got the best birthday gift ever!!!  She said that Liam was just a carrier of CF.  Praise God!  This was such an answer to a prayer!  And I thank Him daily for that.

The rest of my pregnancy went pretty well and I was much more relaxed.  I did have some contractions early but they stopped.  I was told I would probably deliver at 36-37 weeks like I did with Ethan.  WOW wrong again.  The last few weeks I was horribly uncomfortable, couldnt sleep, up all night etc.  Liam arrived on his due date of Nov 29th at 2:22 am. He weighed 8lbs 11.7 oz.  No wonder I was so miserable.  He was HUGE!  Ethan was 5lbs 9 oz.  This was a very big difference.

It's sort of strange having a baby that doesn't have CF.  I feel like I am forgetting something half the time.  No enzymes in the middle of the night.  It just seems very easy.  Liam is also a very laid back baby.  I guess this is a second child trait.  Most of the time he is very patient waiting for us to finish Ethan's treatment.  However, I have become the master at multitasking and have been known to nurse and give Ethan a treatment at the same time.  I feel that's a great talent to be proud of.

I have been lucky to spend 8 weeks home with my new baby.  Sadly I have to go back to work soon.  I am not looking forward to that.  I want to be a stay at home, or work part time.  But I carry the health insurance and we need it.  Hopefully in the future I will be home more. 

Jan 2011 clinic

Yesterday was Ethan's routine clinic visit.  I was so happy that my husband Sean could go with us, he hadn't gone to an actual clinic visit since spring 2010.  Its a long drive for us, a hour and half.  Not to mention I insist on the first appointment of the day.... less germs in my mind.  So we have to wake up 2 hours early to do treatments and eat breakfast before we go.  Here is Ethan on the way with his new dvd player which is great for the trip there and during the apt while we wait.

Dr James was very happy with Ethan and his lungs were clear.  He still isnt as tall and heavy as she would like.  He is 25th for both and sean and I are 75th for adults.  So we are shooting there.  We got some new ideas... We are going to stop giving a high calorie shake as part of a snack in the afternoons and instead give it to him for bed.  This way the 240 calorie shake doesnt affect his appitite for dinner.  Hopefully he will start gaining.  He has been on Zinc for two months now and apparently this is a new thing clinics are trying for babies diagnoised through newborn screening that are below the 50th percentile.  I think that I was in denial for a long time about this because I was a late bloomer.  However Liam is in the 90th percentile, thats a big difference between the two. So our only thing is trying to get Ethan bigger.

Ethan was also re-cultured and we will have the results next week.  His doctor said that she knows how meticulous we are with breathing treatments so the psuedo must be here to stay :(  However she said really not to sweat it... she is "banking on the cure very soon".  She too is very excited about vertex.  I am not discouraged about the psuedo... yeah I don't want it there, however I know that this is very common for CF patients.  We are managing it and keeping it non mucodial.

Of course on the way to the clinic Ethan started coughing a nice dry cough... We are just increasing treatments and watching it.  He already seems better today.

Well after every clinic visit we try to do something fun... and Ethan had both mommy and daddy all to himself.  Something that hasn't happened since Liam was born.  He gets one on one time but never both so we took advantage of this time and took him to a nice fatty meal at Culver's where he ate two chicken strips and fries!  This is a big treat as we rarely let him eat like this :)  After lunch we went to Science Central.   I hadn't been there since I was in 7th grade!  They have all kids of fun things there for hands on learning of science.  Ethan ran NON stop the entire hour and half.  Mommy, Daddy and Ethan were all exhausted. 

 First thing he headed to was the water

 Squirt gun fights

 Mommy and Ethan got to pretend to be on the news...

 This was an awesome piano string thing...haha Ethan LOVES music

Crashed 5 min after getting into the car....