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!
Clem Clan
Friday, November 18, 2011
Tuesday, October 11, 2011
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.
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.
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:
|
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!
Tuesday, May 24, 2011
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!?
Special guest star!! Swoop!
We had a lot of fun this year...
Ethan led the walk...
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!
Sunday, May 15, 2011
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.
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.
Wednesday, May 4, 2011
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 27th…. 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.
Monday, April 25, 2011
Wednesday, April 13, 2011
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!
Monday, April 11, 2011
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. :)
Tuesday, March 15, 2011
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….
Tuesday, March 8, 2011
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!
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!
Sunday, March 6, 2011
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!
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!
Sunday, February 27, 2011
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!
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!
Tuesday, February 22, 2011
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
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
Tuesday, February 15, 2011
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!
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!
Sunday, January 30, 2011
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... :)
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... :)
Saturday, January 29, 2011
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.
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.
Sunday, January 16, 2011
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.
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.
Thursday, January 13, 2011
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....
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.
Monday, January 10, 2011
Snow!
Saturday, January 8, 2011
Medications and Treatments
Here is a list of Ethan's medications...
Albutorol - inhaled 2X daily
Hypertonic Saline - inhaled 2X daily
Pulymozyme - inhaled 1X daily
Tobi - inhaled 2X daily for 28 days on 28 days off
Aquadeks - 2 ml daily
Zinc - 1/2 tsp daily
Zenpep Enzymes - with every meal and snack (14 pills a day)
Prevacid - 1 daily while on Tobi
Vest Treatment - 2X daily for 30 minutes while inhaling above meds
Albutorol - inhaled 2X daily
Hypertonic Saline - inhaled 2X daily
Pulymozyme - inhaled 1X daily
Tobi - inhaled 2X daily for 28 days on 28 days off
Aquadeks - 2 ml daily
Zinc - 1/2 tsp daily
Zenpep Enzymes - with every meal and snack (14 pills a day)
Prevacid - 1 daily while on Tobi
Vest Treatment - 2X daily for 30 minutes while inhaling above meds
The extras we do
Along our CF journey we have gotten lots of advice from several CF parents/patients. We have learned so many extras to do for Ethan as in around the house, food, care etc. At first it seems we were extra paranoid and some things we have become a lot more lax with.
Here are some extras we have stuck with.
First off... Diet.
I got advice early on from a cf mom about eating organic. There was lots of evidence that eliminating foods with pesticides, growth hormones and antibiotics help the immune system work better. Reason being the body no longer has to work to fight off the harmful chemicals but can work harder at keeping you healthier. It makes sense, why put those chemicals in your body that kill bugs. At first Ethan strictly ate organic. It was much easier when he was first starting solids and only ate fruits and veggies. Once he was eating like a toddler it was much more difficult. Now we focus on organic milk, fruits and veggies. He gets snacks like teddy grams, crackers etc. A lot of times I can find these in organic but I only buy them when they are on sale. So we are more lax on the organic snacks. For meat we get all of our meat from the local butcher shop, its not organic but its antibiotic, hormone free and grass fed. We figure this is much better than buying meat at a place like walmart thats mass produced. I know that my beef comes from the farmer on county road 9, an Amish man. He doesn't use these hormones or antibiotics.
Patients with Cystic Fibrosis have to eat a lot of extra calories. I will never forget that the dietitian asked if we were familiar with Michael Phelps diet, because Ethan's high calorie diet as a teen would be similar. I completely get that diet as I was a swimmer my whole life. So E gets a high calorie diet and we add calories any place we can. We focus on the good fats. We were told to smother everything in butter which wasn't something I could do. So we add healthy fats such as flax oil, coconut oil, etc. Yeah we use butter sometimes but that's not our solution to add calories everywhere. We also add in high calorie shakes such as boost kid essentials or a scoop of carnation instant breakfast to milk. We also focus on meats for the protein to help him gain weight. We try to eat more white meat than red meat. Diet is something we are constantly getting new ideas for. Today Ethan ate broccoli dipped in peanut butter! Great snack for a CFer and a great way to trick him into eating his broccoli. He also really enjoys Greek Gods yogurt, he dipps his fruit and gram crackers into that. Everything we buy is full fat. Great for E bad for the rest of us.
Around the house....
We are told as parents that the CF bacterias grow in water, dirt, plants, basically everywhere. So we do lots of extras to try and keep these away from E without taking away his childhood (he's a boy, he plays in dirt). Extra cleaning with the bath tub, no standing water in the kitchen, etc. Also we are not supposed to use humidifiers! Although we just recently purchased a germ guardian filter free humidifier because we are desperate. It is supposed to prevent mold and bacteria growth. Some parents even go so far as to rip out all of the carpet and put down hard wood (we hope to do this one day). Ethan also has a salt lamp in his bedroom that puts a little salt in the air and helps with breathing, supposedly, although I am not convinced. We also have a HEPA filter in his bedroom and in our living room. Last winter we purchased a Dyson Vacuum because its great at pulling out the extra dirt and dust mites that trigger breathing issues sometimes. Ill admit... i wanted a dyson long before Ethan was born. It was worth every penny. We vacuumed with our old first, then the Dyson and the amount of dirt it pulled that our regular one missed was outstanding!
Life...
We have missed several events because of someone being around was ill. We have had to cancel on several friends visiting because they or their child was ill. It's hard and sometimes people look at us like we are crazy but a simple cold could lead to something much more serious. Children with coughs and running noses are not allowed around Ethan. Obviously everything cannot be avoided and he has had several colds but we do our best. It also effects what we can do on weekends for example. We have left a lot of get togethers early or had to miss events because of needing to do a treatment, especially when he is on Tobi every other month. We refuse to let skipping a treatment become a practice around here. It can be a strain but to us its worth it if it keeps Ethan as healthy as possible.
Regularly Ethan goes to see his Uncle Max who is a chiropractor to get adjusted. He goes every 2-3 weeks. Many people believe that getting adjusted also helps with the immune system and I have to believe it. Ethan has never had more than a cold. He had gotten ear infections and we started getting his ears adjusted and he hasnt had one for almost a year now. There is a lot that can be said for that. Studies have also been done about the benifits of chiropractic... we are just lucky to have 3 in our family.
Church is very important to us and teaching Ethan to know the Lord is our top priority. We want him to be a Godly man and inspire others around him. So going to our church is a bit of a challenge. We go to a church of 3000+ which means lots and lots of kids. There are lots of infants in the nursery and every baby who has entered has come out sick, according to friends who put their children in there. Hey if you have to put a sign on the door that says no yellow/green snot then you know there is a problem. Luckily for us our church assigned Ethan a special friend who takes him while we attend service and does Sunday school with him in a special area away from sick kids. As he gets older he will enter the Sunday school class but not at this time. We are so thankful that we have Kendra to help out with Ethan.
Traveling..
Wow going anywhere with a infant/toddler is hard but throw CF in the mix and you have one full car. When we travel we have to take his vest and nebulizer equipment which is the size of a large suit case when all packed and a cooler with all of his meds that need refrigerated. If we are staying the night its even crazier because we need the normal kid stuff; pack and play, toys, diaper bag, extra clothes, stroller, etc. Its just nuts. Our entire truck is instantly full of baby stuff leaving no room for Sean and I to pack. We are getting ready to fly for the first time this summer and to do that with his vest and nebulizer we have to get a special note from our doctor to take his medical equipment on board as a carry on because I cannot let that $15,000 machine go in the bottom of the plane and get tossed around by the employees!
Well that's just a few of the extras we do... And its funny... I always said I wouldn't be the mom who washed the pacy or sterilized the bottles and that I became...
Here are some extras we have stuck with.
First off... Diet.
I got advice early on from a cf mom about eating organic. There was lots of evidence that eliminating foods with pesticides, growth hormones and antibiotics help the immune system work better. Reason being the body no longer has to work to fight off the harmful chemicals but can work harder at keeping you healthier. It makes sense, why put those chemicals in your body that kill bugs. At first Ethan strictly ate organic. It was much easier when he was first starting solids and only ate fruits and veggies. Once he was eating like a toddler it was much more difficult. Now we focus on organic milk, fruits and veggies. He gets snacks like teddy grams, crackers etc. A lot of times I can find these in organic but I only buy them when they are on sale. So we are more lax on the organic snacks. For meat we get all of our meat from the local butcher shop, its not organic but its antibiotic, hormone free and grass fed. We figure this is much better than buying meat at a place like walmart thats mass produced. I know that my beef comes from the farmer on county road 9, an Amish man. He doesn't use these hormones or antibiotics.
Patients with Cystic Fibrosis have to eat a lot of extra calories. I will never forget that the dietitian asked if we were familiar with Michael Phelps diet, because Ethan's high calorie diet as a teen would be similar. I completely get that diet as I was a swimmer my whole life. So E gets a high calorie diet and we add calories any place we can. We focus on the good fats. We were told to smother everything in butter which wasn't something I could do. So we add healthy fats such as flax oil, coconut oil, etc. Yeah we use butter sometimes but that's not our solution to add calories everywhere. We also add in high calorie shakes such as boost kid essentials or a scoop of carnation instant breakfast to milk. We also focus on meats for the protein to help him gain weight. We try to eat more white meat than red meat. Diet is something we are constantly getting new ideas for. Today Ethan ate broccoli dipped in peanut butter! Great snack for a CFer and a great way to trick him into eating his broccoli. He also really enjoys Greek Gods yogurt, he dipps his fruit and gram crackers into that. Everything we buy is full fat. Great for E bad for the rest of us.
Around the house....
We are told as parents that the CF bacterias grow in water, dirt, plants, basically everywhere. So we do lots of extras to try and keep these away from E without taking away his childhood (he's a boy, he plays in dirt). Extra cleaning with the bath tub, no standing water in the kitchen, etc. Also we are not supposed to use humidifiers! Although we just recently purchased a germ guardian filter free humidifier because we are desperate. It is supposed to prevent mold and bacteria growth. Some parents even go so far as to rip out all of the carpet and put down hard wood (we hope to do this one day). Ethan also has a salt lamp in his bedroom that puts a little salt in the air and helps with breathing, supposedly, although I am not convinced. We also have a HEPA filter in his bedroom and in our living room. Last winter we purchased a Dyson Vacuum because its great at pulling out the extra dirt and dust mites that trigger breathing issues sometimes. Ill admit... i wanted a dyson long before Ethan was born. It was worth every penny. We vacuumed with our old first, then the Dyson and the amount of dirt it pulled that our regular one missed was outstanding!
Life...
We have missed several events because of someone being around was ill. We have had to cancel on several friends visiting because they or their child was ill. It's hard and sometimes people look at us like we are crazy but a simple cold could lead to something much more serious. Children with coughs and running noses are not allowed around Ethan. Obviously everything cannot be avoided and he has had several colds but we do our best. It also effects what we can do on weekends for example. We have left a lot of get togethers early or had to miss events because of needing to do a treatment, especially when he is on Tobi every other month. We refuse to let skipping a treatment become a practice around here. It can be a strain but to us its worth it if it keeps Ethan as healthy as possible.
Regularly Ethan goes to see his Uncle Max who is a chiropractor to get adjusted. He goes every 2-3 weeks. Many people believe that getting adjusted also helps with the immune system and I have to believe it. Ethan has never had more than a cold. He had gotten ear infections and we started getting his ears adjusted and he hasnt had one for almost a year now. There is a lot that can be said for that. Studies have also been done about the benifits of chiropractic... we are just lucky to have 3 in our family.
Church is very important to us and teaching Ethan to know the Lord is our top priority. We want him to be a Godly man and inspire others around him. So going to our church is a bit of a challenge. We go to a church of 3000+ which means lots and lots of kids. There are lots of infants in the nursery and every baby who has entered has come out sick, according to friends who put their children in there. Hey if you have to put a sign on the door that says no yellow/green snot then you know there is a problem. Luckily for us our church assigned Ethan a special friend who takes him while we attend service and does Sunday school with him in a special area away from sick kids. As he gets older he will enter the Sunday school class but not at this time. We are so thankful that we have Kendra to help out with Ethan.
Traveling..
Wow going anywhere with a infant/toddler is hard but throw CF in the mix and you have one full car. When we travel we have to take his vest and nebulizer equipment which is the size of a large suit case when all packed and a cooler with all of his meds that need refrigerated. If we are staying the night its even crazier because we need the normal kid stuff; pack and play, toys, diaper bag, extra clothes, stroller, etc. Its just nuts. Our entire truck is instantly full of baby stuff leaving no room for Sean and I to pack. We are getting ready to fly for the first time this summer and to do that with his vest and nebulizer we have to get a special note from our doctor to take his medical equipment on board as a carry on because I cannot let that $15,000 machine go in the bottom of the plane and get tossed around by the employees!
Well that's just a few of the extras we do... And its funny... I always said I wouldn't be the mom who washed the pacy or sterilized the bottles and that I became...
Friday, January 7, 2011
Everyone's doing it
I have been thinking about doing a blog for almost a year. I am finally taking the time to start it. I cannot promise I will update often as I am finishing my maternity leave in two weeks.
Here is the history of the Clem Clan...
Sean and I met in 2006 on cinco de mayo at the Frog. Its a local establishment in the town I grew up in. I actually was the one who made the move :) We were just friends for a couple months and then decided to start dating. We got engaged quick, November 2006 and then we got married April 14, 2007. We both knew we wanted to start a family right away. However, when Sean's family farm came up for sale we decided to get it. This is where we like to say our faith building journey began. It was a nightmare buying the farm, but we desperately wanted to keep it in the Clem family as it had been in the family for 110 years! So many stories and memories for Sean's family. It was a 9 acre lot with two houses (one a rental), 3 barns and a shed. It was very exciting but a big stretch for us financially. However, lots of prayers and so many "signs" were given that we were sure that's where we should be. Ill never forget when Sean's cousin randomly showed up to pray with us, a cousin he hadn't seen in 5+ years because he felt God was telling him we needed prayers.
We closed on the house and the same day Sean was laid off from his job. However, he had another job in the same field lined up. He had been working in RV manufacturing as with the rest of Elkhart County. Our county was one of the hardest hit areas in the country. Our unemployment was nearly 15%, President Obama made a couple trips out here and even mentioned our county in several speeches. Shortly after he started his new RV job, he was laid off from that! However he was very lucky to get another immediate job offer with an electric company. We felt so blessed that he was able to find a job with such a high unemployment rate. About this time I found out I was pregnant with my first. We were so excited. We had been trying for about 9 months and we were about to give up. We thought for sure that an electric job was stable and we had nothing to worry about. That Decemeber, Sean was laid off again... three times in one year. Not to mention, our tenant renting our rental house was also laid off. We orginally budgeted to not count on his rent each month, however with seans lay off from RVs he recieved at 30K pay decrease, so we had no choice. Now, I was the only one working. We held on for a few months, family pitched in and we always had just enough money for the bills and for food. It was such a blessing. However, one month before Ethan was born we made the hard choice to sell. And we were lucky enough to sell this huge property in a hard hit community the same week Ethan was born. God was really there and watching out for us.
What we learned later is why everything was just falling into place. Two weeks after Ethan was born we were told at his well baby check that he most likely had Cystic Fibrosis. I will never forget that day. I sat with sean at the doctors office just balling my eyes out. Sean had never heard of CF, I had... My best friend from college, LeeAnne, had lost her childhood friend to the disease when she was very young. I instantly thought that Ethan wouldnt make it till 20, that he would never play sports like we hoped and that he would be sick all the time. We went right to get a sweat test when he was 3 weeks old. Ethan could not sweat enough to get a result and we were told we had to wait 4 more weeks until he was older. During those two weeks Ethan was dedicated and we promised to raise him to know the Lord and grow up in a house that would do that. We had him on probaly 8 different prayer chains at different churches. However, the biggest thing to come from all of this is that Sean and I started praying together every night for our son. This was huge for me, I never was confident enough to pray out loud, but when my son's health was at stack I got over it.
We went back for his sweat test when he was almost 7 weeks old. He had enough sweat and we were confident he didnt have it. He had already almost doubled his birth wait, he didnt taste salty (I seriously kissed his forehead at least once a day), his stools seemed normal.. We got the results back that night and it was negative! He wasnt even borderline! We celebrated like you wouldnt believe!! We felt so lucky to barely escape that. Well the next day I got a call from the clinic. Even though he had a negative sweat test he still had two genes, which in turn meant he had CF. We were absolutely devastated. Sean and I took Ethan right to the clinic in South Bend. There were "sick" kids in the waiting room and we were so scared. Watching the older ones there scared us so bad. When we got back to talk to the doctor he told us he wasnt sure E had CF. All he had gotten was a hand written note from the state, no official results. What a rollar coaster!! We left hopeful that there was a mistake. In the meantime we found out that our health insurance didnt cover the South Bend clinic and that we would have to go to Fort Wayne. We got in 2 weeks later.
At first we were so upset we had to make the hour and half drive instead of 20 minutes. This change happened to be the best thing ever. At South Bend the doctor didn't even look at Ethan. When Ethan had severe adema (swelling from not absorbing anything) and was so pale because he had almost no iron in his body. Dr James at Fort Wayne confirmed he had CF and started on a list of meds. We found out later that week when I called with a question that Dr James was really kicking herself for not admitting Ethan until he was stablized with everything. His liver enzymes were way off, he had severe swelling, his iron was way off. He was just a mess. So this clinic was the best. We went back two weeks later and he was back to normal and thats where our CF journey began.
I learned everything I possibly could about CF. I made as many friends online as I could, read every book I could find about it, and attended a conference. I know feel very confident about Ethan's health. I know we will have good days and bad days, maybe even good months and bad months, but our faith is strong and our support team is incridible. I still have bad days with the CF diagnosis but on those days I have friends to snap me out of it. I really help to help new cf parents.
Sean and I have started running a Great Strides walk along with the foundation. Last year we had 50+ people there on our team to support us and Ethan. We also raised nearly $11,000 for a cure. On that day I left with tears in my eyes. We felt so loved, supported and blessed. We are so thankful for all of the people in our lives. We are looking forward to this years walk.
In Nov this year we added a second member to the Clem Clan. Liam Elliot was born on Nov 29th. He is just a carrier of Cystic Fibrosis. I had an amino done when I was 14 weeks pregnant. He is an amazing little guy and Ethan LOVES being a big brother.
Well there is a brief history, future blogs will not be this long. :)
Here is the history of the Clem Clan...
Sean and I met in 2006 on cinco de mayo at the Frog. Its a local establishment in the town I grew up in. I actually was the one who made the move :) We were just friends for a couple months and then decided to start dating. We got engaged quick, November 2006 and then we got married April 14, 2007. We both knew we wanted to start a family right away. However, when Sean's family farm came up for sale we decided to get it. This is where we like to say our faith building journey began. It was a nightmare buying the farm, but we desperately wanted to keep it in the Clem family as it had been in the family for 110 years! So many stories and memories for Sean's family. It was a 9 acre lot with two houses (one a rental), 3 barns and a shed. It was very exciting but a big stretch for us financially. However, lots of prayers and so many "signs" were given that we were sure that's where we should be. Ill never forget when Sean's cousin randomly showed up to pray with us, a cousin he hadn't seen in 5+ years because he felt God was telling him we needed prayers.
We closed on the house and the same day Sean was laid off from his job. However, he had another job in the same field lined up. He had been working in RV manufacturing as with the rest of Elkhart County. Our county was one of the hardest hit areas in the country. Our unemployment was nearly 15%, President Obama made a couple trips out here and even mentioned our county in several speeches. Shortly after he started his new RV job, he was laid off from that! However he was very lucky to get another immediate job offer with an electric company. We felt so blessed that he was able to find a job with such a high unemployment rate. About this time I found out I was pregnant with my first. We were so excited. We had been trying for about 9 months and we were about to give up. We thought for sure that an electric job was stable and we had nothing to worry about. That Decemeber, Sean was laid off again... three times in one year. Not to mention, our tenant renting our rental house was also laid off. We orginally budgeted to not count on his rent each month, however with seans lay off from RVs he recieved at 30K pay decrease, so we had no choice. Now, I was the only one working. We held on for a few months, family pitched in and we always had just enough money for the bills and for food. It was such a blessing. However, one month before Ethan was born we made the hard choice to sell. And we were lucky enough to sell this huge property in a hard hit community the same week Ethan was born. God was really there and watching out for us.
What we learned later is why everything was just falling into place. Two weeks after Ethan was born we were told at his well baby check that he most likely had Cystic Fibrosis. I will never forget that day. I sat with sean at the doctors office just balling my eyes out. Sean had never heard of CF, I had... My best friend from college, LeeAnne, had lost her childhood friend to the disease when she was very young. I instantly thought that Ethan wouldnt make it till 20, that he would never play sports like we hoped and that he would be sick all the time. We went right to get a sweat test when he was 3 weeks old. Ethan could not sweat enough to get a result and we were told we had to wait 4 more weeks until he was older. During those two weeks Ethan was dedicated and we promised to raise him to know the Lord and grow up in a house that would do that. We had him on probaly 8 different prayer chains at different churches. However, the biggest thing to come from all of this is that Sean and I started praying together every night for our son. This was huge for me, I never was confident enough to pray out loud, but when my son's health was at stack I got over it.
We went back for his sweat test when he was almost 7 weeks old. He had enough sweat and we were confident he didnt have it. He had already almost doubled his birth wait, he didnt taste salty (I seriously kissed his forehead at least once a day), his stools seemed normal.. We got the results back that night and it was negative! He wasnt even borderline! We celebrated like you wouldnt believe!! We felt so lucky to barely escape that. Well the next day I got a call from the clinic. Even though he had a negative sweat test he still had two genes, which in turn meant he had CF. We were absolutely devastated. Sean and I took Ethan right to the clinic in South Bend. There were "sick" kids in the waiting room and we were so scared. Watching the older ones there scared us so bad. When we got back to talk to the doctor he told us he wasnt sure E had CF. All he had gotten was a hand written note from the state, no official results. What a rollar coaster!! We left hopeful that there was a mistake. In the meantime we found out that our health insurance didnt cover the South Bend clinic and that we would have to go to Fort Wayne. We got in 2 weeks later.
At first we were so upset we had to make the hour and half drive instead of 20 minutes. This change happened to be the best thing ever. At South Bend the doctor didn't even look at Ethan. When Ethan had severe adema (swelling from not absorbing anything) and was so pale because he had almost no iron in his body. Dr James at Fort Wayne confirmed he had CF and started on a list of meds. We found out later that week when I called with a question that Dr James was really kicking herself for not admitting Ethan until he was stablized with everything. His liver enzymes were way off, he had severe swelling, his iron was way off. He was just a mess. So this clinic was the best. We went back two weeks later and he was back to normal and thats where our CF journey began.
I learned everything I possibly could about CF. I made as many friends online as I could, read every book I could find about it, and attended a conference. I know feel very confident about Ethan's health. I know we will have good days and bad days, maybe even good months and bad months, but our faith is strong and our support team is incridible. I still have bad days with the CF diagnosis but on those days I have friends to snap me out of it. I really help to help new cf parents.
Sean and I have started running a Great Strides walk along with the foundation. Last year we had 50+ people there on our team to support us and Ethan. We also raised nearly $11,000 for a cure. On that day I left with tears in my eyes. We felt so loved, supported and blessed. We are so thankful for all of the people in our lives. We are looking forward to this years walk.
In Nov this year we added a second member to the Clem Clan. Liam Elliot was born on Nov 29th. He is just a carrier of Cystic Fibrosis. I had an amino done when I was 14 weeks pregnant. He is an amazing little guy and Ethan LOVES being a big brother.
Well there is a brief history, future blogs will not be this long. :)
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