Friday, February 25, 2011



Well, I finally did it!  I decided to make a blog for those family and friends who aren't on facebook.  My name is Jane and I'm 49 years old and have been married for 23 years.  We have one daughter, Nicole, who is 16 years old.  I have homeschooled her for the last five years and she is currently in 10th grade.  We use the Abeka Academy DVD program.  We have two dogs Lucy ( a puggle which is a cross between a beagle and a pug) and Chelsea (a pug) and we have Spirit the cat. 

In January 2009 my daughter was diagnosed with a congenital heart defect (CHD) called ventricular septal defect (VSD) which means she has a hole (actually two) in her heart between the right and left ventricles.  She was also diagnosed with pulmonary arterial hypertension (PAH or PH) which was caused by the heart defect.  She also has Eisenmenger syndrome which is related to the heart and how the blood pumps.   Earlier this month I took her to a rheumatologist for pain she's had off and on her whole life and she was diagnosed with Ehler's Danlos Syndrome or EDS the hypermobility class.  I haven't had a chance to really research this yet but will talk about it more when I do.  This is just a very general recap of my life. 

I will be posting about a trip we took this month to Honolulu and how it came about etc. I will attempt to copy and paste from my facebook page.  If I can't I will have Nicole do it as she is a computer genius and I am not. 

The purpose of this blog is a release for me for my frustration etc. and also to educate people about Nicole's illness and what she goes through every day.  I also will talk about what it is like for me to go through this as her caregiver and more importantly her mom.  I may also, with Nicole's permission, post some of her artwork and/or photography.  I will have a goal of at least writing once a week but if it is a very stressful day I may pop on.

Thank you for taking the time to read this.

Have a blessed day!
Troubles are often the tools by which God fashions us for better things.

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