Friday, January 9, 2015

Back To Blogging! Update On All Things!

I didn’t forget I have this thing called a blog……………But what I did forget is to take the time to share with others what is going on with my life, my family life, and my health.   If you do follow me on Facebook you pretty much know what is going on with my current lifestyle.  I am super busy every single day that it’s basically almost near impossible to find “good” adequate time in my life to keep this blog updated.  But I know there are some people out there who may be wondering what is going on with me and why I haven’t been on here in what seems like many moons ago.  I can tell you honestly, I do miss writing on here and sharing my life with many of you because I think it “helps” people.  More importantly, there are people who still come to this blog to read about the afflovest, kalydeco for residual mutations, IVF, CF, our daughter, and or just to see if I still exist.  To me that makes me want to keep writing. 

I will start with the family.  Alayna continues to keep us very active at home.  She never stops moving or I should say getting into something when she is NOT sleeping.  I know I never did a 24 month blog but I can say she is one healthy tall and at a perfect weight for her age.  We have successfully mastered potty training.  I don’t recall what actual month that took place but she basically was potty trained before she was out of diapers.  The potty training was an easy breezy experience and I have to give credit all to Maria as she really did most of the training.  No more diapers minus the nighttime diaper and she doesn’t even pee at night equals two very happy parents.   Now only if we could get her to sleep in her own bed all night we would be beyond happy.  Note to all future parents out there………NEVER let your child sleep in your bed.  Oh wait I am getting the payback for what I did to my own parents. 

In other Alayna news, she continues to learn new things.  She talks in full sentences.  It’s just amazing to see in less than 26 months she is already like a grown child.  Where did the baby go???? She still loves dancing, singing to any songs especially Taylor Swift. I know we will be preparing to attend many dance lessons and shelling out lots of money for it.  But it will be great!  The more active she is the better! I could go on and on about all the new things that Alayna has mastered but that would eat up my entire blog.  We are just so thankful to have her in our lives.  She has truly completed our life!

I cannot ever forget about my best friend………..I am so grateful to be married to my best friend!  Yes, if you have the chance to marry your best friend I suggest it.  Why? I say you will find marriage bliss if you marry your best friend.  I could truly never express in words what she means to me.  You know the PRICELESS commericials…….Let’s just say I could make one for her because honestly I KNOW I couldn’t have found a better best friend, a wife, a mother, and soulmate! 

As for Maria’s health some of you may have wondered what ever happened to all those liver enzyme tests.  We are happy to say that those elevated liver enzymes are no longer an issue in this household.  She is definitely a trooper with all the obstacles she has had to endure to have our Alayna and even the aftermath of the birth still lingers.  But maybe just maybe that horrific birth will be a distant memory of the past. 

If you made it this far in my blog post thank you.  Now if you want to read about boring old me…..Thanks for following along.  I promise I will not bore you more than need be. 

I continue to live a beyond busy life as I said above.  It’s a challenge to fit everything in a 24 hour day. I know many of you know who work full time, have a child, have a marriage, try to get enough sleep, stay on top of our CF with treatments etc. understand where I am coming from.  There are some people who ask me how do you function every day John? My answer to that is I don’t really know how I do it but I just keep pushing on.  I do have to give a big THANK YOU to Maria who really keeps this family functioning at a high level.  If I didn’t have her in my life I think we would all be a mess. 

I can tell you I am feeling fantastic the last few months and weeks.  I have actually seen my at home PFTs hit 79%.  It’s not official but I consider it accurate as the device I use is basically identical to readings I get at CF clinic.  I haven’t seen the close to 80% mark since last July.  I credit the increase in PFT to my commitment to using the affLOVEst every day and 4 vials of HTS a day.  Speaking of commitment to compliance, my compliance streak ended this past November.  I successfully did all my nebs, vest, and pills for well over 600 days.  This is something I am beyond proud of because I don’t know how I find time to do all that I do and have time to NOT miss a treatment of pill.   I have felt fantastic the last 600 plus days! I am due to go back to CF  clinic near the end of the month. So we will see what is new there. I hope to have a new blog come out of that appointment. 

The future of this blog…………I don’t know how often I will be blogging but I do know I will continue this for well into the future.  As long as I know there are readers out there and I have the time I will write.  So going forward………I have some more CF interviews I need to post ( I have NOT forgotten about you).  I get a good amount of questions on Facebook about things I do to stay healthy or what devices I am using so I think I should write a blog or two about those Q & A’s.   I also will be giving an update on the afflovest which I still LOVE!  I hope those blogs will be useful to my readers out there.  If there are any topics you would like for me to cover feel free to comment below. 

Until next time…………..Keep LIVING out your DREAMS and FIGHTING as hard as you can for more TOMORROWS!


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