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Monday, October 7, 2013

HOPE: Isla Rose Update


HOPE
Sometimes that is all you have when you have nothing else.
And if you have it, well then you have everything.

Last week, our sweet little Isla Rose was seen at Duke Medical Eye Center to meet one of her Pediatric Ophthalmologist that we were referred to by her local Pediatric Ophthalmologists here in Charlotte, NC. 

She was put under anesthesia to undergo an ERG {Electroretinograph} which is an eye test that is used to detect abnormal function of the retina (the light-detecting portion of the eye). Specifically, in this test, the light-sensitive cells of the eye, the rods and cones, and their connecting ganglion cells in the retina are examined. During the test, an electrode is placed on the cornea (at the front of the eye) to measure the electrical responses to light of the cells that sense light in the retina at the back of the eye. These cells are called the rods and cones.

Because she is only 5 months old, the only way to get successful outcome and readings is under anesthesia. However, we did try it without the anesthesia last month and it was very unsuccessful not to mention the stress it caused her (and us).

Over all, our visit at Duke Medical Eye Center went very well.  We have no results yet and those can  take up to a week or so for the doctor to review, read and study.  We were given photos of what our daughters eyes look like from the ERG. We know there is some concern just by looking at it and also by the quick rundown the nurse and specialist explained to us but all we can do is pray HARD. The Doctor still has great concern for Isla's vision and still leads us to believe she has some type of Retinal Dystrophy, Nystagmus, Visual Disturbance and still possible outcome of LCA. They also took a tube of blood from her in which they will send off for genetics testing.  That blood test will also inform us better of Isla's condition and let us know 100% that Isla Rose has LCA. If that is the definite diagnosis, then Douglas and I will proceed with our blood work for genetics testing as well.  This will help Douglas and I with future family planning of having one more little one IF that is what is in God's plan for us. We just want to take every step cautiously and do the best we can for our daughter Isla Rose. That's our #1 concern, focus and involvement right now. 


With all that said, Isla was prescribed the cutest baby glasses.  They are called MiraFlax.  We even got to choose a cute little color for her.  I am not quite certain what these special glasses will do, but the doctor is certain that if Isla Rose may have some vision now, we're just unclear right now as to how much so the test will tell us everything we need to know. This was GREAT news to us and we are so excited to say the least!!

Here is a photo of  Isla Rose being "fit" for her MiraFlax glasses at Duke Medical Eye Center.  They will be a soft blush/pink which you see featured in the photo below little Miss Isla Rose.  We're very excited to find out what these adorable little things will do for her vision....

  
 
And this is where HOPE falls into place.  Being that Isla's doctor thought it would be a good thing to prescribe her these special glasses gives us so much HOPE!! And that's something we're so proud to say right now.    On Friday, we walked out of the Duke Eye Center after spending two long days there feeling somewhat relieved and thankful that everything went so well.  We now wait for the phone call on the diagnosis. I can't tell you enough how anxious I am to get that phone call from  her directly.
 

Thank you all so much for your continued prayers, love and support.
Tomorrow, I am excited to share our outcome and exciting details from Saturday's 7th Annual Vision Walk for the Foundation Fighting Blindness. It was an amazing day to say the least.
 
Thanks for stopping by!
xo 
 
 

 


3 comments :

  1. Bergen,
    I have been following your story and have been thinking and praying for sweet Isla Rose. I can't imagine what you are going through but know that God doesn't give anyone anything they that can't handle. During our prayers at night, we pray for her with Tilley-Gray, so know that you have sweet little prayers coming to you.
    xo
    Lindsey Cheek

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  2. Hi Bergen,
    I found your blog via Fairy Tales Are True and felt the impulse to reach out when I read about Isla's recent medical situation. Last year during my senior year of college I volunteered at the Perkins School working specifically with infants and toddlers. Although the school, which is famous in the vision community as it is where Helen Keller was educated, was started as a place for the blind, it serves children and adults who have many different kinds of visual conditions. I can honestly say from experience that complications with vision can take many shapes and forms, but whatever ends up happening you will be shocked at how adaptive your sweet little girl will be, especially with lots of love coming in from you. I wish you the best possible outcome and send lots of positive thoughts your way. I agree with your sentiment that God doesn't offer us more than we are capable of handling. Best wishes, Christina

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