Sunday, March 31, 2013

A Month Full Of Thankfulness & Gratefulness - March Style

Every month, I will be challenging myself to create a post of what I am thankful and grateful for in life. This will allow me to reflect on all the POSITIVE that is happening in my life. As we all know you get nowhere when you focus on the negatives in life.  So here is what I am thankful for this month! HAPPY EASTER!

  • Alayna celebrated her 5 month birthday this month.  She is continuing to grow and change in front of our eyes.  She actually cut her first two teeth this month and WE learned about having a fussy baby for the first time.  Poor girl has been in a little pain cutting those two big teeth on the bottom.  Here is Alayna's 5 month post.

  • Maria had a few medical tests this month and I am so THANKFUL that the results were normal.  As many of my readers know, Maria really hasn't felt like herself ever since the birth of Alayna.  I am hoping we are now going down the path to better health for her.  There is nothing fun about seeing the woman you love not feeling good!

  • I celebrated my 28th birthday on March 23!!! Woo hoo! Birthday's are very special in this community as I believe it shows we are staying compliant on treatments and taking care of our health! This year my cake said "Happy Birthday DADDY!!" That was a special feeling seeing DADDY on the cake and not John. 

  • I am so THANKFUL that Maria continues to breast feed Alayna.  I know weird right?  But I have to say Maria is one tough cookie and never gave up breast feeding as she had mastitis (basically a large lump in the breast).  I got the opportunity to experience bottle feeding Alayna as Maria had these medical tests performed.  I can tell you it was a nightmare.  Alayna loves being so close to her mommy and no bottle will get between that.  So for anyone who is thinking about breastfeeding their little baby Maria and I BOTH highly suggest it!!! Breast is best because there is no cleanup whereas bottle feeding is way more time consuming :)

  • Winter is almost over and I am so thankful spring is on it's way.  WE both are so tired of this cold weather here.  WE are looking forward to being outside a lot more with Alayna.  Soon she will be walking around I can tell.  But first she still has to crawl :)

  • This past month I continued to spread some awareness and shed some light on this disease to newly diagnosed parents.  There is nothing like lending a nice comment and story about this disease!  It is my goal this year to be more active in this community and I have been doing it every week.  It is almost an addiction when you help just one person you want to help another.  I LOVE IT!  These parents have been showering me with comments and appreciation that I do not deserve though.  I am just doing what I have always wanted and being me!!

  • Sometimes life is weird........The other day we were at the grocery store with Alayna and this woman stopped us and asked to see our baby.  She loved Alayna!  Then she started talking about her own family and how she had twins and anoher child.  Immediately, Maria and I both thought she did some kind of fertility treatement.  WE could tell just becaue how she was talking about her own children and how much she loved Alayna.  She then started talking about her fertility process and how bad she wanted her own child.  So where am I going with this.....I am thankful that there are people out there who understand the troubles and frustration of fertility.  There is no one on this planet who will understand fertility problems unless you go through them.  It was really nice to see Maria and this lady connect on many levels with fertility and life experiences!! For any of you out there who are struggling with fertility WE pray and wish for you the opportunity that we were granted.  NEVER GIVE UP!!

  • I am thankful that some exciting things are happening in our CF community.  Here are a few of the great things that are happening medical research with Vertex, some of my cysters and fibros having babies or will be having babies, possible adoptions about to take place, the list goes on and on.  It really is a great time in this community as many of us are defying the odds everyday.  I want to personally congratulate a cyster of mine Cindy Baldwin and her husband on the birth of their baby Kate!!! She is beyond adorable. I am looking forward to more photos of her!!!!

  • We celebrated a wonderul Easter with both sides of the family. Alayna had no idea what was going on but it was great to see everyone :) She was not fussy at all and loved to be around everyone. We are so thankful for a happy baby and we couldn't ask for anything more!!

  • March has been another month of 100% compliance for me, Woo hoo!!! Since starting this monthly thankfulness back in February I have not missed a single airway treatment.  I have had 2 full months of tracked airway clearance and I have been 100% compliant! I just looked at my Vest and it says 222 hours.  When I ended the month of February I was checking in at 200 hours.  I guess that puts me close to almost an hour a day being hooked up to this Vest! Take that CF and here is to looking to another month of 100% airway compliance :)

Just like last month, this list is really long and could continue but I will end it here.  So with all that said........What are you thankful for today?  We all have so much in our life to appreciate and be thankful for.  HAPPY EASTER!!!

Alayna and her bottle! She would rather have the real thing :)

Alayna loves those butterflies!!

Alayna and her blue jeans!

Look who is the Easter bunny :)

Hey where is the candy???

Time to dye eggs!!

Mommy and Alayna Egg dye time!

Happy Family :) 


Tuesday, March 26, 2013

Happy Birthday To.......ME!!!

This past Saturday I celebrated my 28th year on this planet! Woo hoo!!! It was a great day surrounded by my beautiful wife and daughter and various other family members. There truly is nothing like spending the day with the ones who love you.
This is how I feel about my birthday and any day for that matter.  I guess I would say that my birthday is a little more special than any other day though……….Every day I get to spend on this planet is a blessing. Not one single day is guaranteed and I honestly try to think this way every day I put my two feet on the ground. When you have a disease or an illness it shapes you as a person. You start to see the world differently as you age and mature. To me, I think I matured a lot faster than most people I went to school with.  

I have made it 28 years on this planet and there is a reason for that. I learned at a young age that I was ultimately responsible for my own health. As much as my parents would enforce me to do my airway treatments it was up to me to throw on that vest and get them done. Personal accountability was something I learned when I was very young and it has shown that it does pay off.  I made my health my life.  If it wasn’t for my compliancy to my own health I do not think I would be sitting in the position I am today celebrating my 28th birthday. 

I set many goals and dreams for myself and I never let CF stand in the way of any of them. When I was younger in my teens I had dreams just like everyone else.  I wanted to graduate high school, attend college, have a career, get married to the woman of my dreams, own a house, and even start a family.  When I step back and look at those dreams as a teenager I can honestly say I have seen every single one of those dreams come true.  But I didn’t just wake up one day and all of these dreams came true.  It has been a journey and a lot of small steps were taken to reach each and every single one of them. There were days full of happiness, sadness, blood sweat and tears but it was in my control for the most part to make these dreams come true.  Trust me, I didn’t get my wife to marry me over night!! 

I still have many goals and dreams to accomplish and I will be flipping that 28 around in my lifetime.  I will be seeing the ripe old age of 82.  There is no doubt in my mind I will put myself in the best possible position to see that age because I owe it to my wife, my daughter, and myself.  I will only get there by continuing to make my health my life like I have these last 28 years!!!

The reason I have to put my best footward is above!!

Notice the cake says Daddy and not JOHN!! Pretty awesome feeling :)
She is ready to eat

I still cannot believe Maria had a baby 5 months ago!

Thumb sucker!!

Shh she has cake on her face. 




Wednesday, March 20, 2013

Responsibility & My CF Responsibility

“In the long run, we shape our lives, and we shape ourselves. The process never ends until we die. And the choices we make are ultimately our own responsibility.” -Eleanor Roosevelt

Here is the definition of responsibility from……………
the state or fact of being responsible, answerable, or accountable for something within one's power, control, or management.

There are so many individuals that are struggling with accepting personal responsibility in their life. Every day we get out of bed we have a personal responsibility for our self and also others. For instance, my responsibility is to try to give my best every day as a father, husband, son, friend, employee, CFer, and the list goes on. In order to be able to provide my best day in and day out I have to accept responsibility for my own actions. Every choice or decision I make is my own responsibility and that’s how life should be.

There will be people who blame others for their choices and decisions they make every day. When you blame others for what you are going through, you are denying personal responsibility. I find this unfair to blame anyone BUT yourself. If something isn’t right in your life and needs to change, you’re the only one who can make that change. Blame yourself and ultimately do something about it.

The path of anyone’s life is directly proportional to the strength of your choices. Everyone has a choice in life. To say you do not have a choice is to relinquish all responsibility and control you have over your life. This basically sums up you do not really care and you give up on life. If you give up you are throwing in the towel on life. NO ONE ELSE IS TO BLAME!

As a CFer, I have a personal responsibility for my health. Not only do I have a personal responsibility for my health, I have to put my health first because without it I cannot take on my other responsibilities as a husband, father, son, friend, and employee etc. That is why it is my responsibility to stay on top of my doctor appointments and treatments. If I am not feeling 100% I need to slow down and reevaluate what I need to be doing differently.

Ultimately, I am in charge of how much I put into my health every day I get out of bed. I have a choice to make if I am going to do my treatments or take a day off. If I am making that choice to not give 100% commitment to my treatments, then I only have myself to blame. There have been times and there will be times again when I do not feel like doing my airway treatments. I have come to understand that it’s not just me who will be hurting from my choices I make. My wife and I are counting on me to be around for our future as a husband and wife. WE still have many dreams and goals WE want to accomplish. The only way to be around to accomplish these dreams and goals is to put my best foot forward every day.  Also, our daughter needs to grow up knowing her father and that is one of my greatest responsibilities to be there for her. I plan to be there when she graduates high school, I plan to walk her down that aisle, and hopefully if she chooses to have children I will be there to be the grandpa to her child.  If I can do anything in my power to be there for her I will do it and that is the greatest responsibility I will ever have.These two girls in my life require me to give it my all in life. They will benefit from the responsibility I take on the decisions I make today as these decisions will be shaping our future.

How do you define your responsibility in your life?  We all have people or goals that can give us responsibility in life.  Responsibility comes in all forms in life so find something today that makes you want to be committed to your health.  We only have one shot at life and hopefully you are taking responsibility for this one shot. 

One’s philosophy is not best expressed in words; it is expressed in the choices one makes…and the choices we make are ultimately our responsibility. – Eleanor Roosevelt

These two girls provide me with the determination every day to put my best foot forward!

Sunday, March 17, 2013

Alayna 5 Months Old Today!

HAPPY ST. PATRICK’S DAY! You are now 5 months old Alayna. WOW! I can hardly believe in another month you will be 6 months! Where has this time gone with you???? It really has been a great 5 months having you in our life baby girl.  You are so special and not a single day goes by that WE don’t consider how blessed we are to have you in our life.  Sometimes I look at you and wonder what WE did to be given this blessing.  

So that brings me to what you have accomplished this past month.  You have found out that you are getting more and more flexible.  This flexibility has lead you to discover that you have feet with toes.  Not only do you grab your feet, you are able to put your right foot in your little mouth of yours.  I know one day when you read this you will be embarrassed but I guess this is a normal thing to do.  In fact, you actually put your toes in your mouth and use this instead of your famous thumb.  But you are very funny because you only want your right foot.  I guess it’s easier for you to grab this foot?? Or maybe you will be a righty?? Honestly, I think you are going to be a righty since you prefer your right thumb and now right foot.  I guess time will tell though. 

Last month, we finally got you on your tummy! Yes, I know we were a little late on this but I think that is because you really hated to be on your tummy.  You would cry as soon as we flipped you on that belly of yours.  But this past month you have loved being on your belly. I guess you had a change of heart.  I have noticed that you were rolling to your side more and more.  I knew it would only be a matter of time before you were ready to roll from your back to your tummy.  On March 7, you decided that you would show us that you were ready to roll from your back to your tummy!  Your mommy and I left you on a blanket and stepped out of your room for less than 30 seconds and we came back to find you on your tummy with your head held high!!! Mommy and me were so excited we started calling grandmas and everyone to tell them you reached a big milestone by rolling over.  You have the biggest smile when you are on your tummy and it melts our hearts. 

While we are on the subject of smiling, there is one person who brings the biggest smile to your face Alayna.  That person is the one and only mommy!! As soon as your mommy looks at you you get the biggest smile on your face.  Bascially, from cheek to cheek your grin is so adorable.  You have one of the biggest personalities WE have ever seen in a baby.  But we are not the only ones who notice this.  A lot of people tell us you are full of expressions from the people at daddy’s work to family to friends.  I guess we are going to be in for a little socialite in you baby girl. 

I have mentioned this before but I am still continuing to bring you with me during treatment time and you seem to love this.  You will start to wave your hands and kick your feet when I put my vest on and it’s so cute.  I guess you are getting use to daddy being hooked up to this machine that makes me sound like darth vader echoing when I talk to you and tell you I love you.  I can say anything to you and you get the biggest smile on your face.  I LOVE IT!!  

Alayna, you are also starting to laugh more.  Your mommy can get you to laugh pretty easily but we have found you are ticklish now.  If we talk or blow on your neck near your ear you will start laughing and it’s ADORABLE.  Those little toes of yours are getting ticklish as well.  You will kick and laugh when we grab your little feet and start tickling them.  WE love to hear you laugh it really makes our day!

As for the things that you dislike. You really really hate when you miss your feeding time.  I guess you love your food.  WE all can tell you love to eat by looking at your big belly. I guess you could say you take after your daddy.  But the last time we were at the doctor for your 4 month checkup you were in the 90th percentile for weight, height, and head size.  So you are very proportional!!  You know weigh 16 lbs and 7 ounces and it seems like you will continue to be packing on those pounds.  

You also are really not a fan when you don't get your nap time or adequate sleep.  Again you must take after daddy.  Usually, you will wake up between 9 and 10 am everyday.  with a nap late in the morning and another nap before daddy comes home.  Your bed time is between 10 and 11 pm and if you are still awake you are not a big fan of this.  There are very few things that you dislike which is great.  You have been one of the happiest babies and WE are so blessed that you are not a crier at all.  

Next month you will be half a year old!! WE cannot wait to see how much more you advance in this coming month.  I think we will finally start adding some baby food to your diet here real soon.  Maybe a tooth or a few teeth will be cut this coming month.  I guess we will see really soon! 

WE LOVE YOU ALAYNA beyond words!!!

Picture time...........

First picture on her tummy when Alayna rolled over!!

Another one on tummy!! 

Alayna loves to smile at mommy on her tummy!

Who is that pretty face??

Yummy toes!!!

Alayna & Mommy!

What can WE say Alayna loves to be in ONLY her diaper :) 

Big Baby!!!

 Happy St. Patrick's Day!

5 Months!!


Bashful Smile!

Sunday, March 10, 2013

Parents Accepting CF! My Response!!

I see a lot of new families dealing with the harsh reality of accepting these two letters, CF.  There are a good amount I find on forums that start out with this statement “We just found out our son/daughter has CF!!! We are so scared and we feel like this is a death sentence. We are crying our eyes out. How will we ever deal with this disease” The sentences go on and on with sadness and worry. 

There are many new diagnosed families who have never even heard these two letters “CF”.  So  I can understand that it’s going to be scary and full of the unknown.  Sometimes I really wish when people are given the CF diagnosis it would come with not here our your sons’/daughter’s gene mutations and hang up the phone.  I have honestly heard that this is how some people are informed of the diagnosis and this is AWFUL.  I want there to be a better way of sharing this diagnosis to new families because that is not the correct way at all to reveal this disease.  There needs to be the “correct” people to reveal this diagnosis.  I believe the correct way to do this is through a pulmonary specialist and also a counselor of some sort.  These individuals can share the knowledge they have through their profession to give some guidance on what to expect next and to reassure them that their son/daughter will be fine. 

But until these things start happening I will be trying to put a positive spin on this disease as much as I can.  So I come to forums to help these newly diagnosed families.  Eventually, I will be branching this out even further of ways to help newly diagnosed families.  I am not sure of how I will be doing this but I have a few ideas.  The first one is I want to hold a “CF education day” at my clinic and have CFers come and share their journeys with anyone who wants to listen.  This hopefully will paint a picture to some newly diagnosed families.  But until then I will try to help as much as I can on forums and social media. 
So here is one of my latest replies to a newly diagnosed CF family. 


My husband and I just found out our little girl of 6 weeks has CF. We are trying to deal with it. I feel so angry and so heart broken for her. People  keep sayin "don’t worry she will grow out of it" or "just drink aloe juice, it cured my friends CF". How do you guys deal with ppls ignorance?? I know they mean well… but it takes all my strength not to scream at them.

Hi momma!

CONGRATULATIONS on that little baby girl!! I think the feelings that you are dealing with are very normal when it comes to newly diagnosed CF parents. I assume you have never heard the two letters “CF”? Most parents of newly diagnosed children have never ever heard those two letters. This can be scary but the world of CF that we live in doesn’t have to be that way at all.

Let me ask you did you Google CF like any other person would? I assume you found a bunch of negative information about how awful this disease is and how devastating it can be. The key here is yes it can be this and it can be that but it really doesn’t have to be all that bad and negative.

The world is full of ignorant people and not just to CF so always keep that in the back of your mind. Most people have never even heard of CF and they make assumptions of what is. I was once told oh is CF that disease that impacts your muscles and nerves? Uhm no that is a totally different disease. So what did I do I started to educate this person on CF. This really allowed me to share my disease and the person that it has made me become.

But when these people come along who are being ignorant it is your opportunity to educate them about CF. WE need to take advantage of these opportunities to spread awareness and put the correct information out there to the public. Try to put a POSITIVE spin on this disease. Tell them how amazing your daughter truly is and how this disease has shaped you and her for the better. The more people who know about CF and have a general idea of what CF is, the better our world will be for everyone with this disease.

I also want you to understand that putting your daughter’s health first is the main priority right now. You are setting the FOUNDATION for your daughter at an early age with this disease. Try to be as compliant as possible when it comes to airway clearance, taking all the medicines, and attending doctor appointments. This will pay dividends for her health in the years to come. She will thank you not right away but when she is older and can understand how much of a POSITIVE influence you have been in her life.

But you have to also remember she is a “normal” child. She will go to school, she will have a bunch of friends, she will be just as active as any other child who doesn’t have a disease. Your daughter will view CF as you view CF. If you paint CF as a dark and scary picture she will as well. You have to try and show her that CF is a part of her life and your life but paint a picture that things will be ok and she will follow this lead as well.

There are so many POSITVE stories out there momma about people who are living out their dreams with this disease. Those are the people you need to find in this community. The more POSITIVE people you surround yourself and your daughter with the better you will feel about this disease. You will find that the people who truly care about you and your daughter will show the greatest support for you.

I know many fibros and cysters who are living normal “healthy”lives with this disease. I for one feel I am in that boat. I have had many dreams come true. I have a loving wife, I have a little baby girl, I have graduated college, I have a career, the list goes on and on. So what I want you to do is see this disease as something that will shape your daughter into a STRONGER person. She will go on to achieve many things in life just like every one else. She has the potential to be GREAT just like every one else does every time they get out of bed in the morning! CF will never define who we are. WE define who we are!!