Monday, December 31, 2012

Alena's #story in #song {#Newbornscreening} #video

You may have read Alena's story before on my blog, or at another site - just in case you are not familiar {and are interested} here is our story again.  For the full story please click on this link, in a nutshell  at 6 days of life Alena's Newbornscreening test came back positive for Classic Galactosemia.  We were already in the hospital, the diagnosis came in, she was taken for a spinal tap, and by the next morning E.Coli had grown in her spinal fluid.  She seized, was transferred to the PICU {Pediatric ICU} where she was diagnosed with E. Coli Mengengitis which can {does not have to be} a effect of Classic Galactosemia, and the baby's exposure to Galactose {at least that is how I understand it - I am a Mom a layperson so double check with your physician}.  As far as I understand it is not understood why some babies with Classic Galactosemia develop E. Coli Mengengitis.  Let me just say that was THE worst moment of our lives.  We are so thankful for the Newbornscreen because without it Alena would most likely not have survived.

Now, what does this have to do with a song?  Well, Ron {my dear husband} makes New Years Resolutions {unlike me} and his 2012 goal was to write one, and publish one song a month.  Congratulations, Ron because you did it yay :) - I am not off topic - really just bear with me....for the December song of 2012 Ron put his recollection and memory of this frightful event into words.  You know, unlike me, he really does not like to talk about that time.  I am so glad he got it out - it is a song for me, for us, for our kids, and also to tell the world about the importance of Newbornscreening.  In his song, he put our fears into words and beautiful music. It brings me right back to that time and yes, it makes me cry....and yes, we are the lucky parents because our child survived.  Both of our children are alive because of Newbornscreening...Please share our story with your friends, those that are expecting babies, or those who just like to listen to music.

Alena's story by my dear husband...


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