Two Years.....Wait What?

Two years ago today, our lives changed forever. Two years ago today, my life changed forever. It changed in so many ways....I wouldn't even know where to start.  We are all different in ways. Of course the obvious....a little grayer, a little heavier, a little older....A LOT more loud, busy and crazy! Ha! Despite my opposition to change, it can be good.

When we arrived at the hospital that morning, I never realized the events of that day would never be forgotten and believe me, I can give you every detail of that day. Sadly, I can't say that about the days my other four were born.  But, I can still remember it as if it were today.  The joyous feeling we had to the terrified realization that our baby girl might not make it if certain steps weren't taken immediately to ensure her safety. The trauma of her birth and the things that I was experiencing through all of that won't ever be forgotten. It won't be forgotten that I totally missed her being born or hearing her cry for the first time or hearing the Dr's immediate assessment of my girl, but God knew what He was doing and so that's what I hold onto.

When my sweet girl turned 3 months old, I felt in my heart something wasn't right.  I remember telling an acquaintance at a mutual friends birthday party that I felt we would be told sometime that year that something was wrong with my girl.  Little did I know how true that feeling was.  After talking to our pediatrician and him also noting some issues, his quick response started us on the journey of Marlee's diagnosis. 

After numerous numerous numerous trips to Children's Hospital, seeing many specialists and having numerous blood tests and tests like MRI's, upper GI's, nasals scopes, swallow studies, sleep studies, echo-cardiograms, ultrasounds, xrays, and the list goes on and on...we had a main diagnosis of 2q11.2 Deletion Syndrome or DiGeorge Syndrome. She was also diagnosed with a subclavian artery that comes off the wrong side of her heart, and a vascular ring which was repaired through surgery at 8 months old. She was also diagnosed with Laryngomalacia, Torticollis, and reflux.  The first year of her life was filled with many fears, tears and questions. Here are some pictures of *some* of the things she went through including tests, surgery, physical therapy and a few extras.  Some of these I have shared on facebook, but not most of them. I hold these close to my heart as they are so very precious to me. They show her struggles but oh how I can look back now and see how far she has come. :)

 

And some more......

 

Her first little year of life was hard. But this second year has been good. Still hard, but good. Praise the Lord, she has been released from most of her specialists because she has done so well. She was just released from physical therapy last week and is currently still in occupational therapy for brachial plexus palsy in her left shoulder.  She is also receiving special instruction through the Arc of Shelby County.  You can go here,  http://youtu.be/Y2qI941HuOY , to see a United Way interview I did for the Arc about Marlee.  She does have a speech delay and will more than likely have to start speech therapy in the new year.  I long to hear her say "Momma" and "Daddy" but I know it will come.

Happy 2nd Birthday sweet sunshine!! We love you more than you know!!

~A