Tuesday, January 22, 2013

Here Is A Look At What Is To Come On My Blog

I thought I would take an opportunity and let everyone know where I am planning to go with future blog topics. So to all my readers/followers, family, friends, cysters, fibros, and whoever else who stumbles upon this blog here is a look ahead of what will be some of the many topics I plan to cover in the coming months. I think everyone will find at least one of these topics worthy of stopping back for a visit to my blog.  I really do not have any order to how these posts will flow, but I just wanted to share this with you.  Also, I have no idea when I will get around to all of them because life with this little Alayna is so amazing.  She obviously gets my undivided attention once I have her in my sights.   

So here are my future blog topics!!!

  • I owe a blog post for someone on blogger and I have really been slacking on this…….SORRY Inhaling Hope, I promise I will get it done!!
  • CF funnies……..this is going to be HILARIOUS!! A lot of you cysters and fibros will be able to connect to this post.  If anyone knows me, I love to laugh!
  • I have to introduce someone who is very special to me as a friend! This person has blown me away on a lot of stuff (CF related) and everyone needs to hear how awesome he is!
  • CF clinic update that is coming in February.   It will be over 3 months since I have been to clinic so I am kind of nervous. I usually head up to my clinic every 8 weeks.  But I am feeling great right now. I will talk about my mental issues with the ever so lovely pulmonary function test………
  • My plan for Great Strides this year.  My walk event is coming in May!!! I have big plans this year to get something big done in my local area.  We will see how successful I am. Wait its not will see…….its I WILL BE SUCCESSFUL!!!
  • Some CF social media sites that I love to read and reply to.  Its our job as elder cysters and fibros to provide knowledge to the youngsters with this disease.  There are a lot of cysters and fibros that really need guidance and to be shown that this disease is manageable and livable.
  • Staying on that same topic I want to help families who are newly diagnosed and introduced to what I call our cult! Its scary for them especially if they have never even heard these two letters………..CF
  • I really want to hold what I call a “CF Education Day” at my clinic or not even at my clinic but to just show newly diagnosed and current cysters and fibros that this disease is difficult but you can have many many dreams come true.  CF is not a disease that defines you.  You define who you are.
  • So if you haven’t heard already I LOVE Hypertonic Saline.  I stumbled upon a great article on HTS and I have also found a great string on a forum related to HTS.  I am going to sound like a broken record, but if you aren’t using this or haven’t tried HTS this may motivate you to add it to your treatment!  Listen up CF Stinks this one is for you cyster!!
  • Have you come to accepting these two letters yet in your life……..CF??? Well this is going to be a good topic to write about.
  • I still have yet to dish on Maria’s clip (this will answer your question Christina) that was not found on her fallopian tube and Alayna’s scare on her CF newborn screening. These are way overdue topics!
  • Quotes to live our life by, what legacy we are leaving behind, selling yourself short in life, and other various topics that will make us all better people……….hopefully.  I really do not know how to explain all of these future topics on this bullet point but they will be interesting to read and write about.
  • I am planning on providing more information on pre genetic diagnosis of embryos (PGD) as I believe some of you may have more questions on this topic.  As I have told many of you and you can see through my blog that IVF has a special place in our families heart.
  • How do you know when you have had an effective airway clearance treatment???
  • Are there any of you out there who thinks CF is mind blowing???? Ok, you will see what I mean when I write about this.  Every single one of us has a different story dealing with CF and no two cases of this disease is the same.
  • I have been wanting to write this challenge for a long time and I hope some of you will also take part in this challenge.  I am going to be thanking and acknowledging the special people in my life through this blog.  Each one of these will be a separate topic.  They will include Maria, Alayna, my CF team, parents, family, friends, cysters, fibros, and the list goes on!  (Looks like 10 posts in this one bullet item)
  • Coming out of the CF closet........Ok, this means opening up to people about CF :) 
  • There will be of course the monthly updates on Alayna and any other various topic that comes to my mind.

These are just a few topics and as you can see it would probably take me months to write about all of these bullet points.

So if you made it through my entire list without falling a sleep, I commend you!

If any of these blog post topics interest you feel free to use them in your blog.  Also, if you have yet to start a blog I highly suggest it.  I love it! It is really a great way for me to unwind and get my feelings and thoughts out about dealing with CF.  So start a blog today!  I would love to read your thoughts on dealing with CF and how you are overcoming this disease everyday! 

TO ALL MY READERS……. Thanks again for taking the time out of your busy lives to read what I have to say!

SO, what questions or topics would you like me to blog about????  I would really love to hear what you want to know about me or answer any questions that you may have....within reason of course! NO, you cannot have Alayna!!

As you can see, my mind is always always always thinking.  Just ask Maria I drive her nuts!!!

This is one of the first pictures of Alayna when she got home! 
I guess she is happy to be in our home!!!

Thursday, January 17, 2013

Alayna 3 Months Old!!

I cannot believe you are already 3 months old.  Where does time go??? I guess like they say when you are having fun it flies.  We have been having a lot of fun with our little miracle this past month.  So without further a do here is the monthly review.  After writing this it has turned into another post that seems like a BOOK!  Sorry in advance but it has some good stuff in here : )

Alayna you continue to grow like the green giant.  I am not even joking on this topic.  When we brought you home from the hospital you were weighing in at approximately 6 lbs.  Today, we weighed you at home and you are almost 14 lbs.  As far as your height or length whatever you want to call it……..you came home at 20 inches long.  You are know over 24 inches long!!!! So it looks like this little baby knows how to eat and pack on the lbs and inches.  If she continues this trend she will be playing in the NBA!!! But honestly, when I look back on pictures of her when she first made her entrance into this world I am astonished she was ever that small.  Its mind blowing how fast you are growing and changing in front of our eyes.  I cannot imagine how big and what you will look like in the next few months. 

In Alayna’s two month review, I talked about how she is so long and that it was getting harder for me to hold her with my one arm.  I am actually trying to remember the last time I did this with her and it has been a long time.  You are  just getting so long.  I also mentioned about her incredible sense of strength last month.  This sense of strength is continuing and its very noticeable.  In fact the other day you scooted yourself on your back and bonked your head in your crib.  Even during diaper changes you will even push off the changer and raise your little butt and babble away. 

There is one person who really notices Alayna’s strength and that is Maria.  Maria has long hair and when Alayna sees that beautiful brown hair from her mom in her face she grabs it.  Apparently this grasp that you have Alayna is like a death grip.  Alayna will smile away while she is pulling Maria’s hair and Maria has the complete opposite expression on her face.  As for me I don’t have to worry about my hair but I will laugh when I see you doing this to your mom Alayna!!!!

You continue to develop your communication skills Alayna.  Again, I mentioned this in her two month review but now her communication is much different.  No she isn’t talking yet but she seems to be communicating back to us. I posted a video of Alayna on Facebook where she is going crazy with her smile and babbling.  Someone mentioned to me that Alayna is going to be talking more than me and Maria combined.  As some of you know I love to talk. I think we are going to have our hands full in time but I wouldn’t change that for the world.

I thought I would share this with everyone to see if their children had a favorite spot to babble and communicate. Alayna your favorite spot where you love to communicate is really odd.  It is really odd that this makes you the happiest but you love it and we love it as well now.  When you get in your diaper changer you go bonkers and loves to smile and babble and look at me and your mom in our eyes.  I LOVE this about you Alayna! This is something me and your mom will remember forever.  So needless to say Maria and I fight over who changes you Alayna.  

Alayna you seem to understand something about your dad already.  Even at this small age you look at me and I can tell in your eyes you know something about me.  You know that your dad is a fighter already I can see it.  Every night I bring you with me to sit next to me while I do my VEST treatment at night.  I have not been bringing you with me during my morning treatment because one, you are peacefully sleeping on your mom and two, I don’t know what this hypertonic saline would do to your little lungs.  But anyway, you will sit there and stare at me and smile back at me when I talk in that shaken VEST voice.  I love it already!!!  Then when I cough you look back at me with this look on your face that tells me “Are you ok Daddy?”  I respond to you saying that I am feeling great and daddy is a fighter just like you my little miracle Alayna!!!  So Alayna I have already introduced you to CF and I will not shy away from this with you.  Eventually, you will start to ask me questions on why I do treatment and medicines.  I promise I will share the reasons of why I do these things with you.  I am not sure how I will approach this but I will not hide from this. 

This past month Alayna, you experienced your first Christmas.  You were sleeping for most of it but it was still fun for both your mom and myself.  All I can say on this topic is that if this trend continues on how spoiled you are from everyone in this family we will be looking for a bigger house! You were spoiled beyond belief Alayna. 

As a fitting end to our year we made a trip up to our IVF center on December 31 with you.  On our car ride we listened to your song Alayna.  Your song is by One Republic titled “Good Life”.  This song is the song me and your mom listened to on our ride to have you implanted that special day!!!  Anyway, we actually had an appointment with one of the doctors.  If you are reading this and thinking we are already thinking about another kid that answer is NOOO, well at least not yet!  The reason we were there was because of Maria’s clip that was no longer on her fallopian tube.  But this topic is going to have a separate blog soon.  (Thanks for asking about this Christina on my blog!!!) So getting back on topic, all the staff and doctors came out to see you Alayna.  They have truly played a major role in giving us the opportunity to have a family.  They were so proud and happy to see you.  In fact, we were there for well over 2 hours.  Everyone was gushing over you Alayna and how adorable you are and how much you look like your daddy!! Maria and I both thanked every single one of these people and told them they made our dreams come true.  I honestly do not think I could ever re pay them for what they have done for our family.  Every single person in the clinic is truly a miracle worker in our eyes. 

Lastly, Alayna you have developed your first cold and it truly has been an event.  Thank God you never got a fever but you have been severely congested in the nose department.  Your mommy has been taken EXCELLENT care of you during this time and it is difficult to see you all stuffed up.  This cold that you have is lasting a long time well over a week heading on two weeks but I know this……..you already are one little fighter.  You have a great attitude little girl and are still your same little self always smiling and babbling away.  I swear you get this attitude from your mommy and not me.

So as you can see it was an eventful filled month for you Alayna.  This is usually the trend in this household so get use to it baby girl! I still cannot believe you are already 3 months old.  You are halfway to 6 months which is unbelievable to both me and your mom.  These past 3 months have been wonderful and I cannot wait to see what is ahead for all of us.  Everyday I think about how blessed this family truly is to have you in our life Alayna!!

As always here is a bunch of pictures of Alayna. Enjoy!!! Sorry this post was a book!

Sunday, January 13, 2013

RIP Dalton Dingus!!!!!!!

Last night was very emotional for me as one of our own, Dalton Dingus 9 years old received his angel wings.  Dalton you no longer are suffering and are now shinning down upon us all!! You are breathing much easier now my little buddy!!!

In fact it was really odd last night. I was about to mention something to Maria about Dalton and how Blake Shelton sent him a personal video.  Apparently, I was thinking of this little angel in Dalton tonight for a reason. 

I have blogged about him about a month ago (My post about Dalton).  Dalton was sent home from the hospital back in November since the doctor's said there was nothing else they could do for him.  Dalton's last wish was to break the Guiness World Record for receiving the most Christmas cards.  That record WAS 35,000 cards.  At the time I blogged about Dalton he had received 23,000 cards.  I made sure to send him a card with a letter to him as well as his parents.  I also shared Dalton's story with a few people I know and they sent cards.  I have a friend who teaches a PSR class and the kids in the class made cards for Dalton.  You my friend are a class act for doing this!! 

Dalton's dream and wish did come true.  So far he has received over 700,000 Christmas cards and they are still not all counted!!! He touched so many hearts in the process of asking for a small task and put the true meaning in Christmas.  Thank you to everyone who made Dalton's dream come true.

Like I said last night was an emotional night for me on a couple fronts.  First, I became very attached to Dalton really fast.  I followed his mom Jessica on Facebook and looked at many pictures of Dalton and could tell what a class act this little man was.  He had a great smile and just by looking at him I could tell he loved living his life.  Dalton's mom Jessica, is also the same age as me 27 and I just could not imagine how she was preparing herself for the potential loss of her son.  Now that I am a father to a miracle I just could not imagine life without our little Alayna.  I was just very connected to this story about Dalton in so many ways. 

Life for a 9 year old boy is supposed to be one of the greatest times in your life.  Dalton was supposed to be thinking about spending time with his friends, playing outside, making a snowman, going fishing with his dad, and of course just living without the worry of this disease.  I cannot even imagine what this little man was going through in his last few days.  Instead of thinking about playing he was thinking about where his next breath was going to come from.  It really pains me to even think this way but it is reality.  I can guarantee that Dalton was surrounded by his family during this time but for a 9 year old boy to go through this is just not fair.  I will never stop raising awareness and raising money for this disease until CF stands for CURE FOUND!!!! I do not want another family to have this same experience EVER again!!

I pray for Dalton's mom Jessica and the rest of Dalton's family.  I cannot even begin to think what is going through their minds at this time.  As a parent, I cannot imagine ever having to say good bye to your son or daughter.  We as parents are not meant to be burying our children.  I know this though that God has a special plan for all of you who were so close to Dalton.  

I personally do not know Dalton or any of his family but I do know that Dalton has made an impact on so many lives.  He truly will never know the true impact he has left on this planet but it is so large.  I know he has received cards from around the world and that right there just tells me so many people cared about this little man.  I for one will never forget this story about you Dalton you have inspired me to CONTINUE to live out my dreams with CF everyday.  You have shown me that dreams do come true!!! When I have a bad day Dalton you will remind me that life is SHORT.  I want others to feel this same way because life is truly SHORT! 

Thank you to the Dingus family for sharing this precious child with all of us!! Dalton's story will never be forgotten.  I am sending all my prayers and thoughts to your family at this time.  May you find peace in this difficult time.

Saturday, January 5, 2013

2012 Summary and Looking Forward to 2013

Sorry this is a little late.  Happy New Year to everyone who takes the time out of their busy day to read what I have to say!!! I am really astonished that I have people who actually want to read what is on my mind and of course to see what is new in our family.

So I am going to take a moment to reflect on some really great moments in our household. There were obviously times this past year that were very very challenging. But when 2012 came to a close I have to say we have had an EXCELLENT year and one that we will never ever forget.

In January we were beginning our second round of IVF and were filled with mixed emotions. There really is not a way to describe what Maria and I were going through during this time but I tried to remain calm and positive. I had faith that this second round of IVF would be successful.

The month of February came and we implanted two little embryos on Super Bowl Sunday, February 5. February 5th was also Maria's father's birthday so it must have been a lucky day for us. This month we found out we were going to experience the greatest miracle of our entire life. We received news that we were PREGNANT!!! Honestly, it was a feeling like no other. After everything that Maria and I (well mostly to Maria's body!!) have been through it was a blessing to hear these words.

March came and it was time for a celebration. March is my birthday month. I turned the big 27!!! Birthday's are very important to our community I would have to say. It just defines that we are ALL living fighters against CF and that everyday we have on this planet is never taken lightly. (Well that statement is my thought. I believe many of my cysters and fibros would agree.) I felt like a new person on my birthday. I know kind of an odd statement. But now knowing that I would become a father in a few months I was just so eager to be a part of my family's life for many many years to come.

In April we went to our first official OB appointment post IVF center, and we were able to see our little miracle on the ultrasound. At this time, the baby looked like a little baby obviously the size of a little shrimp or smaller. But baby's head was formed, we could see arms and legs, and even that miracle flicker of her heart. We will never forget that little flicker on the screen. It reminded me of a lighthouse flickering. At that moment when we saw baby formed it just really sank in. We were going to be a mom and a dad very soon and it was a feeling that I cannot describe.

May 29th we had found out the gender of our miracle!! We decided to tell all of our family by having a cookout.  We had a hamburger party as we were having a girl.  This really was a great moment in 2012 because now we could start planning the baby room!

The month of June came and went. But I am not to sure of any big events that took place.  We continued to attend OB appointments and Maria was feeling movement of our little miracle.  I was also able to feel our little girl moving and it was UNBELIEVABLE.  I was also obsessed with our baby's development.  I had at least 5 baby apps on my phone!!!

In July, I decided to start my very own on blog.  After reading blogs of my fellow cysters and fibros for well over a year I decided that it was my turn to share with everyone how I am living my dreams with CF. (Hence the title of my blog!!!) I never really knew that I actually enjoy writing/blogging and even talking as much as I do today.  Through this I have connected with such wonderful people who are just like me.  I have also read through other blogs that I am not alone in my experiences as my fellow CF friends are dealing with similar experiences as me and it has been a blessing that we have an opportunity to share our battles and triumphs through this media.  I am still astonished today that I have people who actually follow this on a daily basis.  I was even told recently why haven't you posted anything new John.  To me that is what it is all about connecting with others and bringing awareness to this disease.  THANK YOU again for taking an interest in my life!!!

August was an extremely busy month for us and it included again celebrations.  We celebrated Maria's birthday and our 5 year wedding anniversary!!!  I still cannot believe I have this wonderful person in my life in Maria.  She understands me and puts up with all my craziness.  God created Maria to be with me and I am so thankful for this.  I think many of my CF friends would agree that having someone who cares about you and understands this disease is priceless in our life.  Thank you Maria for giving me the motivation everyday to fight and live my dreams.

Also, in August I started using hypertonic saline (HTS).  As many of you already know I love this stuff and I really notice a difference in how I feel.  If you are not using HTS you need to talk to your CF clinic to experiment and see if this will help your mucus clearance. It sure has made a world of difference for me!!!

In September, we finally completed Alayna's nursery/bedroom.  Let me tell you I am not a fan of painting at all.  Thankfully the room was completed in time for Alayna's arrival and we are very pleased with how it all turned out.

October was a month we will never forget.  Alayna was born on October 17 to two very excited parents. (Post to introduce Alayna Our Miracle Alayna As many of you know our birth experience was like no other. (Here is the post to  Our Birth Experience) This month was the start of a new chapter in our life and we couldn't be happier.

In November, we were still adjusting to Alayna and learning how to be parents.  To be honest it just comes natural.  We have learned from experience that you cannot read a bunch of books on what to expect so thankfully WE did not.  Also during this month Maria was dealing with health issues related to her C section which will continue into December.  She is such a strong and inspiring person in my life!!

December we celebrated Alayna's first christmas and it was wonderful.  Maria again was still struggling with health issues due to mastitis and placenta that was still remaining in her uterus. The mastitis was a scary moment and the doctors were talking about the lovely C word, cancer.  Thankfully it was in fact mastitis.  Maria had a DNC performed to remove the remaining placenta. Hopefully we will be looking past these health issues.

WE had a great year in 2012 and we will be looking forward to another wonderful year in 2013. As
I am not a big fan of resolutions  I do want to improve on some things. In 2013, I hope to be on here writing more posts because I have a lot on my mind to share with everyone. Some of my other objectives (NOT resolutions) for this year is to help or shall I say continue to make a difference in people's lives. What I mean by this is I want to see more people happy living everyday to its fullest potential because life is SHORT.  So anyway, hopefully you will continue reading and following along in my ever so exciting journey of what I call my LIFE!!!!  I am wishing everyone a wonderful 2013!!!

Alayna and Daddy in her first snow!!

Alayna loves her daddy's blanket!!