benwriteshisownstory: DAY OF LIFE 29

Monday, March 21, 2011

DAY OF LIFE 29

Today is Sunday and I love Sunday's because I get a visit from my big brother and sister.

They get to hold me and I love it!!

I have such a great nurse that let's them stay longer than she is supposed to, but she knows it's good for me to get "loved" on AND it is good for my brother and sister to see me too.

I love Sunday's!!

They have diagnosed me with "Chronic Lung Disease" (CDL) today but this was no surprise after everything I've been through...CDL is just small potato's!!

What is Chronic Lung Disease?

http://www.webmd.com/parenting/baby/tc/chronic-lung-disease-in-infants-topic-overview

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About Me

Hi friend! My name is Benjamin. I was born on 12/4/2010 - 8 weeks premature. I am very "unique" as I have a 9/14 chromosomal translocation. Basically what that means is that my chromosome #9 has a "deletion" and my chromosome #14 has a "duplication." We are not "sure" what this translocation really means longterm for me and I have been told that there are no "documented" cases of people like me, so essentially, I am "WRITING MY OWN STORY." My goal in doing this story is to offer hope and words of encouragement to other families in a similar situation and also to find other people that may be like me. More than once, it has been asked "how" my translocation happened. My parents figure it happened...On purpose..God doesn't make accidents, ever. I am here for a specific reason; I have been created complete and perfect, just the way that I am. Thank you for joining me on my totally amazing journey of life (that I take at "my" own pace!!)

A Heart FULL of Thanksgiving...

I am so thankful for the love and support that I continue to get everyday from my awesome family and friends. I appreciate
your unwaivering faith in my wellness!

The title of my blog ("benwriteshisownstory") was actually "inspired" by the medical professionals that have helped me. I am very grateful for all of the Doctors, Nurse Practitioners, Registered Nurses, Respiratory Therapists, Specialists, Surgeons, and Staff that have medically treated me along my journey.