Monday, March 30, 2009

Family Links Conference 2009

A few weeks ago, Jeff and I attended the family links conference that is hosted by the Utah parent center.  It was awesome and we learned a ton.  I love going to things like this because it provides an environment where I feel like we fit in.  I always say that raising Em is liking living in a world inside the world.  It is difficult for us to relate to people around us anymore.  Not complaining, but it's true.  The keynote speaker was Dr. Robert Brooks, his session focused on from being stressed out to stressed hardy.  I really needed his speech!  I think he was great, he was funny and also had some great advice.  Check out his website.  We attended the conference with some friends of ours who are also raising a child born with Down syndrome.  We all split up and went to different breakout sessions to get as much information as possible.  During the last breakout session, we all met up again and went together.  It was a panel board of people all born with Down syndrome from age 8 all to way up to 54.  Two of them were even married, and were such an inspiration.  They live on their own and have a wonderful life, I was given hope for Em.  The audience was able to ask questions and we received such valuable information straight from the mouths of those just like our children.  I loved when they were asked about what makes them happy and what makes them sad.  I was on the verge of tears the entire time because of the gratitude I felt in experiencing something so amazing.  Emma blesses our lives in countless ways.  What an experience to remember.  

Friday, March 13, 2009

Cardiology appointment

A week ago today, we met with Emma's Cardiologist for her annual exam.  She has this because she had pulmonary hypertension when she was born.  I was a little nervous because last year they discovered during her echo that her aorta was a little dilated.  Emma was pretty well behaved this time and handled it all like a pro.  She always gets scared at first, but after some coaxing and loves she calms down and cooperates.  Surprisingly, everything came back normal.  There is no evidence of any hypertension and her aorta is no longer dilated.  Last year her Dr. didn't know why her aorta was dilated, it was kind of a strange thing.  I was SO relieved that it had resolved, I almost didn't know how to react to good news.  For so long now we go to appointments and always have an issue to deal with.  The cardiologist decided to discharge us from the cardiology unit.  He wants an EKG done every year, we'll just add that to her yearly screenings that her Peds doctor orders.  He said they wouldn't need to see us anymore unless her EKG shows anything abnormal.  It was really great to walk out with no referrals, prescriptions, or future tests to perform.