Alayna 8 Months Old!

Another month is in the history books Alayna.  You are now 8 months old! As I always say every month, where has the time gone? Pretty soon before I know it I will be writing your 12 month post.  I think we need to call a timeout in this game before I know it you will be walking all over the place. Then WE will really have our work cut out for us.  

As far as your weight and height, you continue to be one long baby and one solid girl as well.  The longer I hold you the less I am able to carry you everywhere without me noticing your actual size.  I swear at your current growth rate you will be a lot taller than your mom and even looking at dad eye to eye.  Maybe you will be a future basketball player?

Last month, you discovered you could roll across the floor.  Now, we have upgraded you to an actual walker.  So no more rug burn for your belly and back.  You love this little walker.  At first, you had no idea what and why we put you in it.  It didn’t take you long before you understood what a walker was and you are a “master” now at using it.  In fact, this walker is your favorite toy.  You will do a complete 360 degree turn and you even reverse out of a tight spot when you get stuck.  It is adorable to see you use because you get the biggest kick out of flying down the kitchen.  I think you even have made it a game to crash into mommy and me.  It really really does hurt though.  My ankles must have a big bulls eye on them.  We will look down after you wreck into our legs and you have the biggest grin on your face.  Alayna you are a stinker that’s for sure. 

Not only do you like to wreck into our legs, you try to run into the dogs as well.  JJ and Mia are scared when you get in the walker and hide under the table or completely move out of your way.  This walker has really allowed you to have some freedom though going up and down the kitchen.  Pretty soon when you start walking I know you will be getting your hands on every single thing Watch out here comes Alayna every one get off the road she is dangerous.

There is one thing about this walker that mommy and me have noticed.  You love to look at your reflection from the dishwasher or the stove.  You will sit there and smile at your reflection and laugh.  Mommy says you get this from daddy.  I am not sure about that though.  

As far as your vocabulary, you are still not saying very much yet.  Last month, you did say your first word and that was “mum”.  Your mom and I have been trying to get you to say more but its been a tough go.  In fact, we have been trying to get you to say “da” or “dada” and here is what has come out of your little mouth.  You do this little up and down nod with your head like you are agreeing with us while we are saying “da”.  Instead of saying “da” you say “ball!” Really? “Ball” that is no where near to the sound of “da”  Well I guess you have your priorities straight already.  Mom and ball are your important things right now and I cannot blame you.  Eventually you will say “da!”

This past month we were going to take you on your first “mini” vacation. We wanted to see how you would be in the car for a short trip to Niagara Falls.  But you had your say in that.  Your top teeth decided they wanted to come in and you were not a big fan at all.  So  we had to postpone the trip to Niagara Falls.  I have a saying Alayna that will get old real fast to you “things happen for a reason”.  There really was a reason behind us not going to Canada and us not going has changed our life in some way.  I will blog about it one day soon but not just yet.  The big changed happened on the day we found out you were going to be a little girl a year ago.  I guess there must be something about May 29^th.

Alayna, you have the best personality EVER.  Lately, you have been doing this head nod like you are agreeing or saying “Yes”. It is beyond adorable.  We will sit there and ask you questions and you will nod yes.  I know you do not understand what we are saying/asking you but it is still funny.  

As far as what you dislike, its still not very many things.  But you really do not like when you have to change your diaper now.  It is more of a lets get this dirty diaper off of me so I can go and play or get in my walker.  You also dislike taking “longer” naps. I would call it cat napping is what you prefer.  If we are in the car for 20 mins that is your nap. What happened to those hour naps? I guess you prefer to be awake.

I cannot believe next month you will be 9 months! Maybe you will be crawling by then. You are almost to the point of crawling instead of rolling to get what you want.  

We love you Alayna!

 

I love this little miracle!

 

Me, Alayna, My brother in law, and our niece. Happy Father's Day! 

 

 

 

Too cute!

 

 

 

Love this kids eyes!

 

Look at that smirk!

 

 

 

Two teeth :)

 

 

 

 

Half Glass Full or Empty? How Much Does That Weight Weigh?

I am going to change it up a little bit for this blog post.  This topic is something that everyone can relate to and maybe when you are going through a life stressor or worry you will think back to this post.  I actually previewed this blog with the wife before I decided to write it and she said “Wow, for once you make sense.” That is why I thought I should share this with you because for once I make some sense.  So here it goes.  

We have all heard of this phrase. “Are you a half glass full or half empty person?” If you go around and ask a few people this question you will hear them say “Yes, I am a half glass full type of person!” But are they really?  In my opinion, I think the majority of people would say they view life in the phrase of  half glass full but they really let things suck up that water in the glass.  There are times in life where we let our stresses and worries get the best of us. This is just a part of human nature.  Lately, I have seen more stress in my life and even some friends that I know going through a rough patch.  So hopefully this post will help me and others as well.  

So lets go back to the half glass full phrase.  Here is a little exercise to do the next time you get a glass of water.   Take your glass and fill it up with water half way.   Ok, now take that glass and dump the water out.  If you look in the glass you will still see that there is water, right? There may not be a lot of water maybe a few drops but the water is still there.   If you think about your life in the half glass full mode and you have a worry or life stressor which makes you want to dump the water from the glass you will still have water in the glass.  The water to me in my glass is my outlook on life and my positive attitude on life. 

When anyone runs into a life stressor or problem sometimes it really gets the best of them.  Your thoughts will turn to negativity and you start thinking about possible outcomes of a scenario. But what does thinking negative do to a person? It does nothing but fuel the stressor or worry even more.   But what I want to start thinking about and for others to think about is that glass of water.  As hard as it is to deal with a life stressor or worry just remember there is still water in that glass as hard as life may seem at times.  Those few drops of water left in your glass is your choice on how you view your life.

If the half glass full or empty phrase didn’t help you I have another approach to managing your life stress or worry.  We have all seen dumbbells and I assume most of us have at least picked one up in our life.  If we equate our stress or worry in life to holding a dumbbell it might help alleviate some of that burden we carry due to our stress or worry in life.  

We all know how much a five pound dumbbell weighs. But we do not know how long you or anyone else can hold that five pound dumbbell for before we start to notice how heavy it really is.  If you hold the five pound dumbbell out straight for a minute it is very light.  If you hold that same five pound dumbbell out straight for hours you notice your arm starts to feel how heavy this five pound dumbbell is.  A few hours go by and your arm may start to cramp up and get tired or even numb. This five pound dumbbell now feels like a hundred pounds and you may just want to drop the weight on the ground.  In each of these scenarios, the actual weight of the dumbbell doesn’t change.  But the longer you hold it the heavier it feels.  I think we can all agree to that!

Our stress and worry in life is like carrying that five pound dumbbell around.  If you sit and think about your stress and worries in life for a little while it doesn’t really bother you.  If you think about your stress and worries longer it starts to consume you and you start creating more stress and worry in your life.  If you sit and think about your stress and worry all day long you will start to feel numb and incapable of doing anything until you drop the stress and worry.  It is just like the five pound dumbbell scenario.  Do you want to carry a five pound dumbbell straight out all day long? I sure do not want to carry this five pound dumbbell all day long. 

So if you read this entire post you may be thinking what is the point of all this.  I want you to remember that there is still water in your glass no matter how much stress or worry you think you have and that dumbbell still weighs five pounds.  It is up to you to determine how heavy that dumbbell gets in your life.   To me, we are in charge of how we view our daily life stress or worry.  We ultimately either make our stress and worry heavier than what it should be or we minimize it through our attitude on life.  No matter what happens in a day make sure when you wake up the next day your stress and worry from yesterday is no longer weighing you down.  

 

This little girl makes all the worries in world go away!

 

 

 

 

Maria's MRI Liver Results

So here is a quick update on Maria’s liver.  If you have not been following here is the last post.   The doctor ordered an MRI since all of her genetic disease testing turned out negative for alpha 1, lupus, and a few others.  The reason the doctor wanted to perform an MRI was to rule out the “c” word and to get a more detailed picture of what her liver looks like.  

This Wednesday was the MRI. Not only were we anxious for the results of the test it was going to be a long day for Maria. Maria is still breastfeeding so that meant it was going to be a day of pumping and dumping.  The MRI was performed and as soon as Maria was heading out the door the MRI tech said make sure you call the doctor right away to schedule an appointment to go over the results! Uhm, ok so what does that mean? Did the tech see something on the MRI and was concerned? As we all know they cannot and will not tell you anything so you have to wait to call/hear from the doctor.  The panic and anxiousness continued for the both of us the rest of the day.  I kept reassuring Maria it was going to be positive news.  Nothing good ever comes from thinking negative so I have been remaining calm through this entire process.  

Today, Maria called for her results.  The nurse informed her that everything in the MRI looked normal and there was nothing concerning.  WOOO HOO!! Also, she had a blood test a few days ago to check her liver enzymes and the nurse also gave her the results.  The liver enzymes are dropping but are still high.  Another WOO HOO!! The good thing is that her liver enzymes are dropping and not getting any higher!  

So the next plan of action is she will have monthly blood tests to check the status of her liver enzymes.  Then we will follow up with the doctor in 4 months! I am hoping and praying that the liver enzymes continue to get lower every month.  We will just have to wait and see.  Maybe all this elevated liver enzymes was caused by a fatty liver during pregnancy?  But there is nothing fat on Maria at all : )

WE are so thankful that there was nothing found on the MRI to be concerned about.  So that black cloud that has been hanging around for months now can now move on.  I just want to say THANK YOU to everyone who has kept us in your thoughts and prayers.  

I opened my fortune cookie today to read this! I guess it was meant to be good news!!

A Month Full of Thankfulness & Gratefulness - May

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. Here is the month of May........

·         At the end of May Maria and I escaped from the house. Yes, this basically was are first night out minus Alayna. We have been without her before but never for more than 2 or 3 hours. This night we were gone for over 6 hours at the Tim McGraw concert. I think we really enjoyed people watching this time at the concert. There were so many strange people walking around. Maria and I both missed Alayna and I think Maria went through the photos on my phone at least 3 times looking at Alayna. There are plenty of photos on my phone well over 1,000. Ok, I know I am obsessed but what can I say. She is my little girl! After all the rain and mud at the concert we had a great time spending quality time with each other. Nothing like courting the one you love!!

·         I was thankful this month to take a few days off of work to spend some quality time with Maria and Alayna. It is very hard to be at work all day long waiting to drive home and see my girls. Even though we didn't make it to Canada like we planned we still had a blast. In fact during my stay at home we had some very exciting thing happen to us. I will write about this in a future post.

·         Alayna celebrated her 7 month birthday in the month of May. She is continuing to grow and change in front of our eyes. Time is going by so fast. She will be crawling soon I know it Here is Alayna's 7 month post.

·         Our Great Strides walk took place this month. This year, my team raised the most money we have ever raised for a walk which was $1,695. I am so grateful to have walked with Maria, my mom, and a few friends this year. If you have ever donated to the Cystic Fibrosis Foundation, I am so thankful to you. The light is getting a lot closer to finding a real medical break through for this disease. We wouldn't be this close if it wasn't for all the generous donations through the years. THANK YOU for helping add tomorrow's to my life and everyone who is impacted by this disease!

·         May marks my 6th year at my employer. I have been there ever since I have graduated college. I am so thankful that I have the opportunity to work full time. If it was not for my employeers health care plan Maria and I would not have had the benefit of going through our pregnancy journey. Many and most insurers do not cover any fertility treatments but my employer decided to cover fertility treatments for infertile individuals. This was beyond a blessing. I am so thankful to be working every day and I have not missed a single day due to CF (minus my gal bladder surgery)! I know there are others in this community who would love to work full time but with the demands of this disease it isn't possible. For some people with CF this is their full time job and there is nothing wrong with that at all.

·         I am thankful that a cyster Megan and her husband David received the birth of their miracle little girl in May. Sydney is so adorable!! Megan and David went through fertility procedures just like Maria and I and WE are so happy everything worked out for the two of them. All the blood sweat and tears are so worth it! Congrats to the both of you and I love seeing pictures of Sydney. Here is Megan's blogsite if you would like to read their exciting story.

·         May 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 4 full months or 120 days of tracked airway clearance and I have been 100% compliant! I am so motivated to keep myself as healthy as possible for my family. I know they want me to be around for years and so do I!!!!!!!

We all have something to be thankful for so.....................what are you thankful for today?

 

At Tim McGraw!

 

Great Strides 2013

This past weekend was the Great Strides walk!  The walk is the biggest fundraiser benefiting cystic fibrosis and is held all across the United States with over 200 walk sites.  I heard at the walk ,the Cystic Fibrosis Foundation (CFF) goal this year across the country was $42 million.  I want to explain that cystic fibrosis gets very little government funding  and one of the reasons behind that is cystic fibrosis is considered an “orphan disease”.   So we rely solely on the generous donations from individuals, small businesses, and corporations to help find a cure.  Today, cystic fibrosis therapy and medication has come a very long way in these last 20 years and we have the CFF to thank for pioneering these advancements.  The CFF has many drugs in its pipeline and there are drugs/therapies that I am benefiting from because of the CFF’s dedication to finding a cure. 

As for the walk, it was one HOTTT day.  The temperature was well over 80 degrees so that meant Alayna was staying home : (  I really wanted Alayna to come on the walk but I knew it was way too hot for her.  I was so excited to have her wear her personalized shirt that Maria made.  Next year, she will be walking right next to her daddy though.  I cannot wait! 

I have been attending this walk site for now well over 10 years and every single year there are more and more people which is AWESOME.  More people equals more money raised.  I can still remember 10 years ago this walk site was raising around $30,000.  Last Sunday, the goal was to raise $123,000.  When we finished the walk, they said the total raised was $121,000.  Woo hoo! 

My team had a great time this year.  We raised a record amount of $1,695. I am so blessed to have a wonderful family and friends who want to see a cure for CF one day. My team included Maria, my mom, my friend Tom, and my friend Jason and his wife Emily and their daughter Katie.  As always, I have a wonderful family including Maria’s side of the family who always supports me on the walk and I cannot thank them all enough for how much money they donate every year.  This year my friend Jason, donated money at Christmas time to the CFF.  Instead of buying gifts they decided to donate money to various charities.  The CFF was on his list and I cannot say enough about your kindness and generosity Jason! Not only are you my friend Jason, you have listened to me talk about CF and you also were there to provide a positive mindset when Maria and I were going through IVF.  I also want others to know that you wanted to actually learn more about CF and checked out a book at a local library on CF.  Not many people I know would actually go to a library and read about their friend’s disease. 

My friend Tom has been going on the Great Strides walk for a few years now and it is always great to have him there.  This year he decided he was going to do something very generous for me and for all of us cysters and fibros.  Unfortunately, Tom’s mother passed away and in the obituary he wanted people to donate to the CFF in lieu of flowers.   This was beyond a gracious gesture as his mother had no ties to the CFF at all.  I was very surprised that people donated close to $200 through this in lieu of flowers.   Uncle Tom (uncle Tom is what we call Tom now in our house) THANK YOU for being a great friend!!!

We all had a great time walking our 10K walk and we even finished in record time, under 2 hours!  I am so blessed to be surrounded by amazing people who care about adding tomorrow’s to my life.  If I did not have such a loving wife, family, and friends my life would truly be incomplete.  As for the Cystic Fibrosis Foundation, I cannot say enough about their drive and dedication to make these two letters CF one day soon stand for CURE FOUND.

 

 

 

 

 

 

 

The Latest Update On Maria's Liver Results

I would like to give everyone an update if anyone is wondering on the status of Maria’s blood tests. If you did not read the last post here it is. 

We received the news of the blood tests early this week.  They were again checking to see if her elevated liver enzymes were tied to any genetic diseases.  Celiac disease, Alpha 1, and lupus to name a few.  The results did come back showing that Maria does NOT have any of these genetic diseases. So some of you may say well that is great news.  In fact, that was my first initial reaction but we still do not have a single answer yet.  Maria’s liver enzymes are triple what they should be for someone of her age and her current health.

So now what? If you recall the doctor wanted to rule some things out and the first step was to rule out those genetic diseases.  Now, the doctor would like to have an MRI performed on her liver.  The MRI will be used to see her liver basically the imaging inside the liver and the surrounding organs.  They will be able to see if there are any growths, tumors, or if there is any possible liver disease.  The MRI will also look at blood flow to the liver and make sure things are not blocked to any organs.  Maria has had an ultrasound performed and the results show nothing wrong with the shape of the liver or any growths.  The MRI will provide a more definitive answer than the ultrasound is what I have read.  

We are still waiting on the radiology department to setup the MRI.  So we sit here and wait.  It is not fun at all not knowing what is going on and that something maybe wrong with the one you love and care about.   I am hoping that Maria fits into that category the doctor has of seeing about 20 patients in his career who just have elevated liver enzymes for no apparent diagnosed reason.  

If there is anything that could be possibly wrong with anything I know that this family will take whatever steps is necessary to return Maria back to full health.  It seems like this road back to 100% health has been very long and even a mystery but I know we will get to the bottom of this.  This family is stronger because of our path we have been on these last few years and nothing will ever bring us down!

So that is the update and I will post again when I have more information.  Your thoughts and prayers are greatly appreciated.   

Alayna 7 Month's Old!

This is a little late Alayna. May 17 you hit the 7 month mark and where has time gone! But life has been very very busy this past week.  We still cannot believe you are another month closer to your first birthday.  You are growing up WAY TO FAST.

You are one long baby Alayna.  At your last checkup you were still in the 90^th percentiles in height.  In fact every time we look at you we cannot believe how long you are.  We are still not sure where you got all this height from because mom and dad are not tall.

 
There is something you really are starting to love and that is BABY FOOD.  In fact, you know what a bib is and when daddy has it in his hand you get all excited because it is time to eat.  You love every single food that comes out of the jar.  I think your favorite now is bananas.  At first, we started to just feed you half the jar and save the rest for another feeding but now you will eat the entire jar. Sometimes you act like you have never eaten anything before. You are our little hungry machine.  
 

The best part of feeding you is your personality.  You get the biggest grin on your face and show those two little white teeth on the bottom.  Sometimes you will let me know when you want more because you get very vocal about asking for more food.  We still have yet to start you on a baby cup but soon we will introduce you to that. Who wants to eat food and not drink anything? 


We are still working on getting you to sit up by yourself on the floor without mommy or daddy behind you.  The problem is you like to put everything in your mouth and you lose your balance easily.  Soon, you will be sitting up we know it. But you love to roll around from your tummy to your back and you repeat it.  In fact, you will even roll across the floor like that with the biggest smile on your face.  As far as you moving, you love to not sit still at all and you will tell us if you are bored.  You will grab anything and everything in your sight and put it straight to your mouth because eventually you will get more than just those two teeth on the bottom.
 

Alayna, you did reach a big milestone this month and that is you said your first word.  Mommy was telling me that you said mum but I didn’t hear it so I thought she was playing a joke on me. I read you one of your favorite books called “Where is Mommy?” and half way through the book you said mum.  In fact you repeated it another time. So I admit your first word is mum and not dada!! I am so glad that your first word is mum as your mommy is beyond your favorite person.  Now, when you get sad or mad you will scream out mum and it is so adorable.  I guess I wouldn’t want it any other way when it comes to your first word. 
 

As I write this post Alayna, you are sitting with your daddy watching me do my evening airway treatment.  You seem to have understood why I put you in your chair and you sit and look at daddy for a good 20 minutes now.  It is funny because I think you have picked up on something that daddy does when he is doing his treatment and that is coughing.  I cough at least every 5 minutes when I am vesting and you get this look on your face like daddy are you ok? I give you a big smile and you will smile back letting you know I am just fine. But you now will cough randomly during the day and get a big smile on your face! I guess you picked up on something daddy coughs and then he smiles so you do the same thing now. 
 

Well things you dislike that is pretty hard to find very many because you are such a happy baby.  Right now you have your moments to let us know when you are not happy. You like to play with toys now so you will let us know when you get bored.  So we take you out of your chair or go play in your room. Your favorite toy is your lady bug that has blocks on it! You will get fussy if we do not feed you fast enough as well.  I am coming to a blank right now and that is all I can think of on the things you dislike.
 

I cannot believe next month you will be 8 months old! I bet you will be crawling soon and that means it will be non stop movement for you Alayna.  As always mommy and daddy love you!