Clem Clan

Clem Clan

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... :)

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.

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. 

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....

Monday, January 10, 2011


 We finally got some snow around here which I had been waiting for!  E got new light up snow boots and snow pants for Christmas so I couldnt wait to play outside with him.  My sister, Lydia and I snapped a few shots!

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

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!

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. 

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.  :)