Sunday, February 1, 2015

Living the Good Life

A quick update on life lately... In one word, AMAZING!  Addie is Addie... sweet, loving, hilarious, demanding, and sassy... the life of the party!!  She is still a hardcore Momma's girl but has been enjoying some Daddy time while Momma attempts to work a few days a week!  Her appetite is back in full force and she is chunking right up!!  I love seeing those big cheeks and belly :). Her taste buds are finally back to normal and she eats just about anything and everything.  She was even able to enjoy some HuHot this week (we went at 4:00 and we were the only ones there, as germ free as you can get in public, we are more than ready for Day 100 and freedom from the mask)!!  Addie eats from the time she wakes up until she goes to bed... I think it is safe to take her off of the appetite stimulant :).
 
We had her two week check up this week and Addie had an ECG and an Ecco.  Our cardiologist, whom I am pretty sure is the big man on campus and who is extremely direct, said that things looked good... The same!  He said if he didn't know it was Addie's Ecco he would say it was "normal" but since he knows it is hers and of her history, her heart may still be slightly stiff!  He really is stumped as to what happened and why?! And also of what the future will bring!  He feels she has been getting too much diuretics and our next step is getting her off of those and seeing how her kidneys and heart will respond... Fingers crossed and prayers going up that all will be well!  So far so good :). 
At her check up, I also got a great deal of information about antibody therapy.  Because of what Addie has already underwent on the protocol, it is the best and most convenient option at this time to stay at the University and have the protocol's antibody (rather than go to NYC).  In the next two weeks, Addie will have a full work up of scans to assess her disease state (praying for clear, clear and more clear!) and we will determine the best time to start antibody therapy!  I will be sitting down soon and learning what that all entails and after that will do my best to inform you of what is to come!  
It is safe to say that after my meeting with the oncologists, Addie has the worst of the worst but miraculously she is responding and she is HERE with us... Praise Jesus!  The outcome for what Addie has is not usually good and the hurdles she will have to overcome are tall but my girl can do it!!   I feel more than ever that what lies ahead for Addie is already determined and is a part of His perfect plan for her.  My job is not to make these decisions and feel anxious about what is to come but to enjoy her and make this journey that she is on as happy and pleasant for her as possible... My job as her mother is to love her and take care of her, I will leave the big decision making up to her Heavenly Father who knows far better than I what is best for her!!  This is definitely all easier said than done and I am constantly reminding myself to give up the worry and fully TRUST in His will for her... I know with all my heart that whatever is to come we will never face it alone!!  

I really can't get enough of this girl's personality and wish I could share more videos with you all.  She is seriously hilarious!!  She has been the life of our party and the personality of this family since birth!!  She is also so loving... She melts my heart on almost an hourly basis and then will turn around and be the most demanding little turd of all times... But hey, that is my Addie Bean!!!  

I was told recently to just LIVE and how hard that can be when you are going through something like this... And it is true!!  I am doing my best to live with a joyful and grateful heart and enjoy my precious blessings every moment!!  
Prayers for clear scans, a strong heart and efficient kidneys!!  Prayers that we will never again have to hear that Addie has cancer... Forevermore she will only be referred to as a cancer survivor!!!

Go Team Addie! 

Emma turns ONE!! 


Her token look... Loves to sniff that blanket :). And check out those lashes and eyebrows!! Woot woot!!  Full head of fuzz also... I am pretty sure I am going to finally have a girl with brown hair like me!!




Gracie's big idea... Bean Boozled, hilarious and disgusting all at the same time!!