Alayna 13 Months.........A little late : )

Alayna, I have not forgotten about you!!! I know this is a little late but I still want to continue your monthly updates.  One day, when you get a chance to read all these monthly updates, I think you will be glad I took the time to write these.  I know I wish I had something like this when I was growing up.  We all can take 1,000,000 photos of our child but NOT very many have an actual status update every month that includes what is going on right then in their child’s life.  For that I am thankful I started doing this for you, Alayna.

Alayna you are now 13 months and a little over a week old today.  WE honestly do not know where the time goes but it does go somewhere : ) You had your 12 month checkup a week or so after your actual birthday and you are now 21 lbs. 7 ounces and 31 1/8 inches. Your weight puts in between the 25-50^th percentile and your height is still 97^th percentile  We still cannot believe how tall you are!! Who knows maybe you will play volleyball, basketball, softball, or dance when you get older.  Daddy doesn’t mind which one you choose : )

As for your monthly developments, not much is new.  I think you only walked for about a week or two until you mastered the art of running.  No one can stop you from going to any room in the house now.  Well I guess the fact that we are now closing bedroom doors. But it’s like we are playing defense against you.  I think maybe you really like to hear the word NO because that is basically what we say 75% of the day.  It’s more like “NO Alayna stop climbing the stair!!!”, “NO Alayna stop trying to pull out the plugs!!”, “NO Alayna you cannot eat the dog food!!”, etc etc. 

I think though you really enjoy reading books with mommy and daddy.  You are funny because you have a few books you really love more than others.  One of your favorites is The Five Little Pumpkins.  When you see that book on the floor you run over and grab it and say pum pum. That is how you say pumpkin.  Some of your other favorites is Maisey’s ABC’s which you have destroyed every single flap you can possibly open.  Oh well it’s your books so feel free to do what you want with them.  Other favorites include the Biscuit storybook series.  Biscuit is a dog who you love.  I think you like the books because you get to touch and feel the hair on a dog, hair on a cat, and various other touch and feel pages. Another one of your favorites is the body book. This book has photos of toes, fingers, knees, mouth, teeth, ear, and other photos of kids running, painting, standing etc. I think you are turning into a baby genius.  We asked you where your knee was and you pointed right to your little knee.  You had the biggest smile on your face! When you do not want to sit still and eat, we like to give you these books. That sitting still and eating thing is something you have yet to master.

Not only do you enjoy having books read to you, you love music more than anything.  Both mommy and daddy are thrilled about that as we enjoy music just as much.  We can turn on any radio station or even have the tv on and you pick up the beat.  One of our favorite things to see you do is feel the beat of the music when you are in the kitchen.  You walk over to the oven and look at yourself and dance.  Sometimes you will even bring a prop in with you.  It’s not that you dance only way you actually change up your dance moves based on the song.  That is something that truly amazes us.  Right now one of your favorite songs is sung by Lorde called Royals.  I think you just love the beat of this song more than anything.  You truly are an entertaining little girl already!

As for your diet, you still like to eat baby food. But we have added some additional foods to your menu.  I guess you are a noodle lover because you really like lasagna and butter noodles.  But when you eat the lasagna you spit out the meat. There are times when you will eat something once and the next day or so we give it to you its like the most awful thing created.  For instance Nutra Grain bars.  You love them one day and hate them the next day. 

As for your liquid diet, you still love breast milk. One day when you read that statement you will be embarrassed. (Don’t worry daddy will embarrass you in front of all your boyfriends one day!) We are in the process of weaning you but it’s really hard.  I don’t think you like bottles of any kind as we have probably bought almost every brand possible. But you do like the old school Tupperware cups that have the lids.  It’s funny because mommy and daddy both used these when we were growing up.  I am happy to report that you do like water.  There are some people out there who hate water.  Water is so good for you so let’s hope when you’re older you still enjoy it. 

Something else we are still struggling with is bedtime. I wonder when you will ever sleep in your own bed for a full night???? You end up sleeping in our bed every single night.  Oh well, your daddy did the same thing as a child.  I guess it’s time for a payback to see how my parents felt about me sleeping in their bed.  But one day I guess we will miss having you scream at 2 am begging to get in our bed. You make sure to sleep al kinds of different ways by kicking us in the face, gut, or laying basically on top of us.

Alayna, you continue to be a little social baby.  Anywhere we go you always are smiling at strangers.  I think you enjoy getting attention as you know you are adorable.  But I have to say you are very well behaved when it comes to going out in public.  You will just sit in your stroller and be so content.  We are wondering how much longer that will last!!

 

Right now, that is all that I can think of.  You continue to get older and smarter by the day.  It’s almost scary how fast you are learning about your environment.  I cannot wait to see what you learn in the next month Alayna!

 

We Love You!

 

 

 

Why Did I Start Blogging? 100th Post!!

This post marks my 100th blog post!!!! Honestly, I didn’t realize I have blogged this much in the past 15 months. I guess I have a lot to say : )  Not only that, if someone asked me 2 years ago if I would have a blog about my life and have 100 posts I would have said no way.  But I LOVE blogging.  Maybe that is an understatement….  

I never really expressed why or how I even started blogging about my life. For me, I have never met anyone with CF.  I can tell you this that I have always been interested in how others live and cope with this disease.  When it comes to meeting people with this disease most of the people in the community have met others through hospital stays or what we call tune ups.  For me, I am beyond lucky to never havehad a single hospital stay or tune up.  Basically, a tune up is where you go into the CF clinic and stay a minimum of 2 weeks receiving heavy doses of i.v. antibiotics and visits from respiratory therapists to pound the mucus of out your lungs.  It’s NOT a two week vacation from school, work, or anything else at least that is what I am told and have read. But anyway I was always curious how others battling my same battle battled every day.

So here is how it all started…………….One day I was google searching running and cystic fibrosis and stumbled upon a link that opened up my eyes to a new world that I didn’t really know ever existed.  I know that sounds very very strange. But the link I clicked on was my fibro’s blog site.  All I can say is thank you Ronnie!!! If it wasn’t for clicking on your blog site I would not have learned that this blogger world ever existed.   I started reading many of the blog posts on here and read the comments that were left on posts.  I would click on the profile names of individuals who left comments to be directed to their very own blogger page.  Through all this, I found MY community of warriors who are battling much of the same things I do every day.  I know we all have different obstacles when it comes to CF but it is nice to find people who may have gone through some similar things that you have or will in the near future.  

After reading and following other CF blogs in the community for close to a year, I decided it was a good idea for me to take my CF life public.  One of the biggest reasons why I decided to blog was during OUR fertility journey we couldn’t really find anyone with our similar story.  There was no one that we could find who had a CF spouse (ME) and that their spouse was also a CF carrier going through pre genetic diagnosis (PGD) and IVF.  Once we were given our miracle news that we were pregnant, I decided to put OUR life out there for the public eye.Graciously, Maria approved of that decision : ) I wanted to put it all out there because I know WE were not the only people who would/will be going through this process.

Apparently, I was correct in this assumption! One day, I decided to Google search CF and IVF.  If you google CF and IVF you will get close to 1,200,000 results.  My blog post about OUR IVF journey is #3 on that list.  I guess that means people are reading OUR story and Google thinks at least that post has some value to it : ) To me that is pretty neat!!

Before I began this blog, I wanted to find a name for my blog that fit my life.   I decided to name my blog “Living My Dreams With CF” because that is honestly how I feel about my life.   I have been blessed with a fantastic life beyond words could ever describe. Through my blog, you have seen how blessed I am to have a FANTASTIC wife in Maria who motivates me every single day to put my best foot forward in every single thing I do.  In fact, she has seen more ups and downs in her health than I have in the last 2 years.  But never once has she ever said I am done or I am giving up.  When Maria found out she was a CF carrier and then soon after that she found out her infertility  she could have said there is no way I am going to go through anymore.  But never once did she say I quit. She has shown me that I truly am blessed to have the life that I do have. I cannot thank you ever enough to have you right by my side every day!!

Another dream that has come true in my life is that I am a father.  This is something that many people may take for granted outside the CF world. In the CF community many of us were told we wouldn’t see life beyond a certain age.  For most of us in my CF generation that was anywhere from teenage years to mid 30s.  So that meant going to college, having a career, getting married and having a family was I guess you could say not realistic. But never once did I take those words to heart and I believed that I would defy the odds.  Well for all those who read my blog you can see that I have accomplished every single one of those. Most recently, with the birth of Alayna I defied the odds again.  

Alayna is another reason that fuels my motivation and determination every day I get out of bed.  I am more determined than ever before to be as compliant and healthyas I possibly can.  I want to see that day Alayna starts kindergarten, graduates from high school, and I want to be there to walk her down that wedding aisle, and not only that to become a grandfather to her future children.  

Through my blog and other various forms of social media, I found a passion that I never knew existed.  That passion is raising awareness about CF and putting a positive spin on this disease to my readers, my fellow cysters and fibros, and even parents to CFers.  I honestly LOVE talking to all of you whether it’s through blogging, facebook, or forums.  I have been so blessed to be as healthy as I am with this disease and I feel that helping others overcome their challenges with this disease is my mission.  I have had the opportunity to interact with many of you and have made lifetime friendships.  I never once thought before I got my feet wet in this community that I would be talking to people all around this world.  I have been able to help a mom living in South Africa to a CFer, others who live in Europe and even Australia.  That just blows my mind.  I will continue to raise awareness and stay as positive as I can when it comes to this disease.   I hope you all continue to read my journey as I create more awareness for everyone who is impacted by this disease.

But most of all…………………………………………………………………..

THANK YOU for reading and being a part of my blog.  I appreciate anyone who takes the time out of their busy day to read what I have to blab about : )

Our Dog JJ - We Will Always Miss You!!

This past Sunday, was one of the most difficult days of our life.  If you have ever owned an animal and you treat your animal like your own child you will understand how hard Sunday was for our family.  I introduced our four legged family last year and gave everyone the summary of what JJ and Mia mean to our family.  Here is the post if you are new to my blog. 


Our dogs are like our children and they will always be our children.  Before we became parents to Alayna we were parents to JJ and Mia.  We treated both JJ and Mia just like our own kids.  We would do anything for them.  As you recall, JJ our male dog had back surgery about 3 years ago for a slipped disc.  We found out during the surgery that he had degenerative disc disease.  Basically, his discs in his vertebrate would always be bothering him to some degree.  During the surgery, the surgeon tried to fix every disc he could but there were going to be a few discs near his head and lower tail that would not be fixed.  They didn’t want to mess with discs in these areas because they could cause a lot of trauma and permanent damage. 

I know we will never forget picking JJ up after that surgery 3 years ago.  He was so happy to be walking out that door of the vet office.  He was coming back home to his parents and his friend Mia. The orders that JJ received when we took him home was he basically had to be crated or put in a pen where he could have little movement to heal his back.   We converted our family room into our bedroom.  We basically lived in our family room for 2 months sleeping on the couch and a mattress on the floor. 

After the surgery, we also found out he lost complete bladder control because his disc pushed so much on his spinal cord that it almost became severed.  He basically was thankful to be walking. JJ was in a diaper from the day he had surgery as he would just leak urine out since there was no muscle control.  So that meant we had to physically drain his bladder.  I will not get into all the details but this was going to be done 4 times a day.  Mainly Maria was doing all this work and it was like taking care of a baby.  She eventually got into a routine with all this and it became a part of our daily life. 

Since JJ was diagnosed with degenerative disc disease he would always have back flare ups where his back would go out and he would have to be crated to a room for 6 weeks. We had to keep him as calm as possible which meant basically no one could come to our house, no one could ring the door bell, no vacuum cleaning,  anything that would excite him would be a no go.  This was beyond challenging as JJ is a dog that got very excited by just about anything.

A few weeks before Alayna’s due date JJ’s back went out.  We thought then that it was going to be the end for our little warrior.  But Maria and I both wanted him to meet Alayna.  We knew it was going to be so difficult to keep him confined and relaxed but we tried everything we could.  Luckily, within a week or two his back finally calmed down.  JJ got to meet our miracle Alayna and we were thrilled.  We were given two little warriors in our life in the both of them. 

Fast forward to this past Saturday at 1 am. Maria and I both knew JJ’s back was out again.  He got out of his bed and started shaking and his back was fully arched and he could barely walk straight.  Maria went to express his bladder and he couldn’t hold himself up on his back legs.  We knew then it was time.  That night he didn’t sleep at all due to all the pain he was in. 

The next morning we knew it was time to say good bye to our warrior.  I have to say it was the hardest thing to ever experience for both Maria and I.  This was the first time we had ever had to say good bye to an animal.  For us JJ was more than our dog he was our son. He will always be our son. 

Through JJ I learned a lot about my own life and what I have been blessed with.  That is something that no one could ever take away from me.  I always knew I was blessed to have Maria in my life but through JJ I found out I was blessed beyond words. Through JJ it has made me realize how lucky and blessed that Alayna and I are to have you in our life, Maria.  You would do anything for our family even going above and beyond what anyone would ever do.  I’m beyond thankful to call you my best friend, my soulmate, my wife, and best of all the mother to our daughter.   You will always be JJ’s mom and no one can ever take that away from you.   Thank you JJ for creating memories that will last a lifetime and most of all for showing me how BLESSED we are to have Maria in our life. 

We will always remember you buddy!

We miss you and LOVE you J.J.!!!

JJ next to his daddy.  We will always be family.  He made it to welcome Alayna into this world :)



Mommy and JJ.  Mother and Son. 

JJ in his diaper with his best friend forever Mia.  

WE WILL MISS YOU JJ! We hope you are running around and having fun!!!