Tuesday, May 14, 2013

I'm Still Here!

I guess it looks like I went MIA for a little while.  My/our life has been really really busy this last 1.5 weeks. But I still do not know where the days or weeks ever go anymore.  Just imagine I AM NOT COMPLAINING but I have a lot on my plate.  I work full time which has been very hectic lately., I come home to an amazing family and I want to spend every second with them because when I am gone at work I miss both my girls A BUNCH.  I try to do as much as I can when I do get home (laundry, clean, dishes, empty dishwasher, fold clothes, the list goes on). And yes I do have Cystic Fibrosis so I make sure to get my 2 sets of airway treatments in even if it is past midnight.  So here is a bullet list of what has been going on or what will be going this week.  This week is very busy in our household.

  • WE celebrated Mother's Day Sunday! When you go through a fertility journey like we have, celbrating Mother's Day is liking celbrating the Super Bowl or a Birthday.  WE have grown to learn that through our fertility process that life is truly so beyond precious.  WE honestly did not know if we were going to be able to have a child.  Alayna has made many dreams come true in our life.  I just want to say that my wife is my best friend, my soul mate, the woman of my dreams, and is also the MOTHER to our daughter.  No one can ever take that title from you Maria! 

  • As I mentioned above this week is really busy.  Here is why..........Tuesday, Maria has a doctor appt. with the liver doctor to go over why her liver enzymes are still elevated.  WE need to get some answers and a plan of attack on why they could be elevated.  WE have heard elevated liver enzymes maybe because of a fatty liver and other things.  I am just praying that we get some answers on this soon. 

  • I have CF clinic on Wednesday and I will be participating in that research study I mentioned I was in last clinic visit.  Basically, its a bunch of questionaires and I have to do a PFT.  Sometimes I will not do PFTs but I am every time I go to clinic because of the study.  They want to see if things have changed and some of the questions that I answered could tell them why. If that makes any sense.  As we know in the CF community the PFT is a love hate relationship.  But I have been feeling pretty good lately.  I will be asking about starting HTS 3% in the evening as I only do 7% HTS in the morning.  I plan to update the blog by at least Thursday night on the results of Maria's and my dr appt.  

  • Alayna will hit the 7 month mark on Friday so expect a post on Friday.  She has said her first word and she will repeat it through the day now. 

  • This sunday is the Great Strides walk for my team.  I am looking forward to making our team donation and seeing how much money was raised.  I have been doing the walk for well over 10 years now and the total that is raised at this walk is amazing.  I will hopefully update the blog by Sunday or Monday. 

  • I still plan to write the Kalydeco Part 2 blog soon.  I just don't know when.  My "free" time now a days is when I am vesting.  In fact, I am writing this as I am being shaken to death. 

  • Since May is CF awareness month I am going to write about how I opened up about my CF in the workplace and elsewhere.

So looks like a busy week and hopefully some posts will come out of all this.  I hope everyone who is reading this is doing well and remember to spread some CF awareness this month as May is our month!!

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