Reflections and Supporters

When Jax was born I was overwhelmed with emotions.  In seconds, someone so tiny, fragile, beautiful, and the immediate owner of my heart.  After a couple of hours of my family getting to know him and cuddle with Jax.  Our Doctor came in to check him out.  Checked his heart, perfect.  Checked his ears, perfect. Checked his lugs, perfect. Checked his toes, perfect. Checked his fingers, perfect.  Checked his temperature, perfect. Check his throat, perfect. Check his left eye, perfect.  Checked his right eye, not perfect.  My heart stopped, when I heard the Doctor say he had never seen that before.  He wanted to wait a little bit longer to see if the white spot on his eye would disappear.  When he came back to check again, the spot was still there.  Doctor Chopra set us up an appointment with an eye doctor, Dr. Whitfill.  The rest of the day our family spent time with us still cuddling my new bundle of joy.  Tuesday evening we were released from the hospital and came home.  Jax met his best friend Tyson and they were instant cuddle buddies.  Wednesday morning we woke up very early to go to the eye doctors.  That is when we found out that Jax has PFVS, (persistent fetal vasculature syndrome) and congenital cataracts.  We were referred to Kansas City Child's Mercy Hospital.  When we were there a doctor said to me, "There is a lot of information on the internet, be careful what you read.  Not all will be true and most information will scare you."  She was right.  I did read a lot that scared me.  I was terrified that my child would never see and it would affect his entire learning ability.

While I was internet surfing one afternoon, I came across a wonderful site that kept popping up on each search I entered on Google.  www.greatglassesplayday.com  This website had lots of information on lots of different vision problems a lot of children are battling.  I then dug a lot deeper into the website and found another website, www.littlefoureyes.com.  This website also has a lot of helpful hints and tips, and a great support group on Facebook.  I requested to join the group of Facebook and was not really involved in sharing my story, but loved reading about others.  I read how people struggled with patching, struggled with their child wearing their glasses, struggled with loosing contacts constantly, struggling with rude remarks while in the community.  Those were the exact things we were struggling with.  One day I posted Jax's story.  I got lots of positive feedback and advice.  I have grown very attached to some of the moms and dads on that support page. 

Last year, I decided that I would host Kansas' event Great Glasses Play Day.  It was nothing fancy.  I did not get the word out like I would have liked to.  This year I have received a lot more questions before I was even promoting the event.  The people that attended last year told others about this event and now there are lots of people that are wanting to attend. 

I have grown to have a great passion for Children's Vision.  That passion was born that day when we found out that Jax has PFVS and Congenital Cataracts.  My passion continues to grown and will keep growing each year.

   Just a Happy Patcher

 

 

 

 

I've Wrestled Congenital Cataracts, I've fought eye Surgery, I'm at war with Patches,

 But I am winning this Battle!