Tuesday, January 17, 2012


This is my first post of what I hope is to be many!  Let me begin by telling you a little about myself.  I have a wonderful family.  I have an amazing husband and two beautiful children.  Camila is just over a year and Finnley is 3.  We live in the Tampa Bay area and love all that this area has to offer in terms of weather and activities.

I recently stopped working to be a full-time mom.  This was a very difficult decision as I loved my job and was making a good income, but as most mom's can relate, I felt I was missing too much being away from my children.  I love being at home with the kids, but find that obtaining a healthy life balance is actually harder than when I was working so this is where part of the equation to this blog comes in to play.

The other part of the equation is Finnley "Finn."  We were so excited to learn we were pregnant with Finn.  I had a relatively normal pregnancy with a few minor concerns - Finn was small and had a heart arrhythmia.  I also had bleeding in the first trimester.  The heart arrhythmia went away before Finn was born.  I opted to not do any genetic testing while pregnant.

If Camila was our first child, we would have known something was wrong with Finn before we left the hospital, but being first time parents, we didn't have a clue that some of the things he did or didn't do weren't exactly typical.  Feeding was a huge challenge.  Finn cried so much and didn't sleep longer than 15 minute intervals.  I remember crying at 5 months because Finn didn't smile much or giggle.  He didn't roll over or seem like he wanted to even try.  He was covered from head to toe in eczema and it was clear that he had  multiple physical abnormalities.  Our pediatrician referred us to genetics.  We had to wait a few months before we got in.  The doctor advised us that Finn most likely had a chromosome abnormality and when Finn turn 11 months we got our answer: Finn has Trisomy 9p and 9p24.3 deletion.  What does this mean?  Well, the geneticist handed us a piece of paper from 1979, the year I was born, and said good luck.   

So there my husband and I were left with little reliable information and basically zero resources of where we could get help in the area or on-line.  I googled like crazy for the months following Finn's diagnosis and found finding information on Finn's syndromes was difficult at best and finding resources in the Tampa Bay area was difficult as well.  We were very fortunate to stumble upon a few websites and a few people that could share bits of information here and there, but I kept thinking it would be great to have all of this information consolidated because I imagine there are more people out there like me looking for ways to be advocates for their children and to help their children in any way possible.

What we do know about Finn's diagnosis is that he has global developmental delays, he has many orthopedic issues, he had heart defects, he has hydrocephalus and other issues involving the brain, he has hearing loss, GI issues, urology issues, immunology issues, and others.  We don't know exactly what Finn's future will look like, but we do know we are going to help Finn be the best Finn he can be.  Finn is a lover and a ladies man.  Finn is friendly and cautious.  He likes to be challenged and loves books, puzzles, trains, and puppies.  Finn loves cookies and he loves his baby sister. 

I am excited to share what we have learned in terms of resources and also to share Finn's journey. Our last three years have been filled with tears, laughter, and triumphs.  Every day is a blessing and every day we celebrate something new.  Over the past three years I have learned to find my own voice so I could find Finnley's. 

Finn and Camila

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