Wednesday, September 21, 2011


Today we visited the ophthalmologist.  Scarlett's eyes have not been examined since before her first surgery, so it was time to follow up.  As always, we were ready to hear whatever the doctor had to say, ready to do whatever needed to be done.

We knew there was some limitation to Scarlett's peripheral vision on the right side.  In the days before her first surgery, the tumor as growing quickly and we were seeing slight changes on a daily basis.  One was her eyes beginning to move in different directions and unable to track from side to side.  The doctor then told us that the optic nerve was in good shape, but that the tumor was putting pressure that was causing her eyes to deviate.  Once the tumor was removed and the pressure equalized after her first shunt was placed, her eyes came back to center and eventually began tracking and following movement.  One pupil has always been slightly larger than the other, but both are equally responsive to light.  

However, we noticed she was ignoring things on the right side, especially once her hearing was compromised.  I could with my face just inches from her right ear, and she would not turn or pay any attention to me.  Even with the hearing aids, she seems to just not pay attention to what is on her right.  This extends to her reflexes some; if we tip her toward the right, she does not put her hand down to support herself the way she does on the left.

Today was the first visit to the new doctor, who will now see Scarlett every few months.  She was, first and foremost, so amazed by Scarlett!  The little miss was all smiles until the eye drops had to go in.  She tracked and followed every toy and light that the doctor used (something she will never do for momma at home!)  After allowing her eyes to dilate, we were relieved to hear that her vision remains undamaged.  The peripheral field cut will always be present, but children, especially those as young as Scarlett who haven't experienced much different, simply learn to deal with it.  I had braced myself for glasses, vision loss, or worse, but was pleasantly surprised.  It doesn't happen all that often!

We are up to nearly 20 registered blood donors for our Oct. 22 drive!  Our goal is 100, and today's article on the Newark Patch gave us a great boost!  If you are planning to donate, please make an appointment!


April said...

Wonderful news about her vision check up!!!

Stephanie said...

I have never commented before, but I just wanted to say that I think Scarlett is an amazing little girl. I have never met her, and living in TN, probably never will, but she is definitely an inspiration and you as her parents are an inspiration to me as a new parent as well. I would love to give the day of her blood drive, and will be doing so at my local red cross. I know it doesn't help you guys out with your drive any, but just wanted to let you know that I am doing my part for her here.

Lindsay said...

I read this blog all the time but have never commented. Tonight reading this I was in tears of joy to get good news and to know that it is just one less hurdle. She is absolutely amazing and you are all so strong.

Mollie said...

Our 10 month old son has Duane's Syndrome which means his left eye does not track outwards to the corner. he just turns his head. :)

Robin said...

It is so great to hear about Scarlett's vision! You all deserve such good news! Scarlett is an absolute Doll! I laughed to myself when I saw the pic of her on Daddy's back! SO CUTE!! God bless!

MC said...

Great news! She continues to amaze everyone! Oh my, almost a year old. Time flies!!
Hugs from PA to Miss Scarlett and your family. Keep it up.

Sherri Beck & Jessi Rice said...

I would love to donate there for her, however I live in Louisville, Kentucky. I have followed your story from day one and I want you to know I still pray for all of you daily!

You all are an incredibly strong family and I am blessed to be able to read her story!