wolfhirschhorn.org

Since this blog will be mainly about our daughter Juliana, I have appropriately named it “Julianazworld”.  I look forward to sharing her life along with ours with other families with children who have WHS.  Our kids are our world & Juliana has been a force & I fighter since the day she was conceived.  Here is a little bit of her story.
Our daughter Juliana is our oldest biological daughter she was born April 8th 2003.  She has a sister Valerie who is 15 years old. We foster-adopted her when she was 10 years old. Juliana also has a younger biological sister, Bethany who is now 4 years old.  Juliana is so many things…  She is funny, stubborn, strong, & tenacious.  She is beautiful, bright, & literally bubbles with energy I wish I had!
I am currently working on her bio update for the 4p- Support Group.  I think I will add that info to her profile here when I complete it.  But, for now I will tell you that Juliana is non-verbal but she is beginning to use yes/no cards.  She struggles with ambulation, but can scoot around on her butt fast as a bullet to get around.  She eats pureed foods by mouth with assistance, but gets some formula & water everyday via g-tube.  She takes Lamictal to control absence & drop seizures.  She is legally blind but seems to see so well we have a hard time believing that could be true.  She does have a mild nerve hearing loss & has tubes in both ears.  She has always struggled with GERD but takes Zantac & is doing well on it.
Juliana goes to school 5 days a week & she loves it!  She is in a special class that helps her build life skills, but she also integrates into her grade level each day.
She has been a very healthy & happy child for the most part.  We have had a few bumps in the road.  But for the most part, her syndrome has caused her very little health issues.  She is just on her own time clock as far as milestones are concerned.

We are a close family who depend on one another each & everyday to care for Juliana & one another.  I am so excited to have found this WHS Blog.  It is a beautiful site!  I am glad it is here as a place to share our experiences with our very special children.  I love seeing all the pictures, videos, and words of encouragement.  I am a visual person so I especially love to see all the great pictures!

I look forward to sharing more in the future about “Julianazworld”.

🙂 Gina