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Friday, February 12, 2016

Isla Rose Update



It has been a long time since I've posted an update so I want to try and start where I left off last April.
Isla has been to her eye doctor a handful of times and each doctor visit has been pretty general with no new news given so I feel like that has been part of the reason I have not posted an update on her. About a month ago, she started to press on her left eye.  Her left eye is her weaker eye. She tends to hold it shut with her fingers when she is watching something on her iPad or when she is trying to look at something for a long period of time.  It's hard to figure out why she has started doing it and her teachers believe it could be because she is trying to only use her right eye to see with.  She  still wears her cute little miraflex glasses about 80 percent of the day and the only time she does not wear them is when she is outside and that's because she needs her sunglasses to block out too much brightness. She certainly lets us know real quick if we've forgotten her glasses or sunglasses wherever we go.  I love that she has become more independent about keeping her glasses on.

  As some of you may know, we have been waiting on the answers from our Whole Exome Sequencing testing that we had signed up for back in November of 2014 - the results were inconclusive.  It was a relief hearing those results but it also left us filled with mixed emotion once again because we are still wanting a firm diagnosis or answer.  We may never get a firm answer or reason for what is causing Isla's low vision but all we can do is pray for her, love her and keep doing everything we can possibly do that will help prepare her for her future.


Last summer Isla started using a pre-cane and has loved becoming more independent in her environment by using it.  It has given her the confidence to explore in areas that she was afraid of before.  Sometimes she uses her little pink grocery cart to help her navigate through our neighborhood or wherever it is we may be. Over the months, we have learned more and more that Isla needs light to be able to move more comfortably in unfamiliar places. This is probably why she loves spending so much time outside and also explains why we keep our home so well lit for her. We believe Isla most likely can see colors and objects/movement but is probably missing a lot of the details. (An example of this is when Isla was in a therapy class with another little girl, she moved very close to her - like within a few inches and at times almost face to face - and was looking at the little girl using her hands to feel and touch the other little girl.)  Isla also has an incredibly memory recall and a great sense of object performance. When she gets to a playground, she will typically walk, sometimes run, around the same area a few times before she has it memorized and then you will see that she feels more comfortable to move around the area with confidence. She doesn't play on any of the playground equipment but sometimes she will want me to take her down the sliding board. I hope that in the future, she will make friends that she will build trust in to help her and guide her around the playgrounds.


Isla's teachers have been working with her on figuring out her depth perception and how far/close she may need things in order to complete a task in a classroom setting. Isla has had the chance to view the LEA cards with her vision teachers.  I loved watching her during this activity!! Typically, the size of the shapes on the flash cards is set in increments to be viewed at 10 feet and sometimes her teacher will use them at 5 feet.  Isla viewed the cards best at around 4 feet and was able to consistently tell the shapes from that distance and sometimes leaning in at 2 feet for more clarity on some of the flash cards.  (This is where she typically holds her left eye shut so she can only use her better eye) With near reading of the objects she seemed to look at around 4-5 inches (the average reading size is considered to be 13-16 inches just to give you an idea). Her vision could be something around 20/400 or 20/600 and this is just an estimate because we truly do not know how much information she is missing.  We can just estimate that whatever part of her vision is allowing her to see, it allows her to see these sizes at the distances with good lighting.  A lot of you guys have asked if Isla will learn to read or learn braille and we are planning for both and we hope that she will be able to do both. With LCA, it is said to be progressive so all of her doctors and teachers are treating it that way so she may lose her vision by the time she is a teenager.  I get really emotional thinking about her losing any of the vision that she has now and sometimes I still cry myself to sleep at just the thought of it.   

I love giving these updates on Isla and I like to focus on mostly the positives of our life and though these blog updates on her can see sad at times, there are so many wonderful things about Isla that totally outweigh the not so happy ones.  We have amazing family and friends that give us uplifting support and love and we will always be forever thankful.   

On an ending note, I want to try to start blogging again.  Does anybody read blogs anymore?  What are some of the things that you wanna read about or hear about on my blog?  I have had a lot of requests for doing posts on mommy and me, what Isla wore and sharing fashion/beauty products I am currently loving.  I just don't know if I have an audience for that kind of stuff here on my blog.  Feel free to share your thoughts with me.

Thanks for stopping by!

6 comments :

  1. She is such a beautiful, stylish little gem of a girl! I would love to read more about the normal day-to-day goings on, and of course your favorite sources for her amazing wardrobe! Definitely love beauty posts as well :) So happy to read a great, positive update. She is a doll!

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  2. I somehow stumbled across your beautiful photos of precious Isla on Instagram, I think, and found your blog and read Isla's story back when you last posted. I have been wondering how she is, and so I am grateful for this post. I wish you had better news, but I am still so in awe of how much you have done to learn about Isla's condition, and all the things you do to help her. That said, she seems to be a trooper, and I think we forget that both humans and animals adapt. I cannot imagine how difficult this is for you as a parent, and I'm sure you would gladly gift her your sight if you could. But at least she is not experiencing a sudden, terribly confusing loss of perfect vision. I feel that would be far more devastating and complicated to explain to a child as young as she. She is simply being Isla, living what is her "normal" anyway.

    I hope none of this comes off as offensive. I suppose I am only trying to say that I think you are a tremendous mom, and that Isla is a remarkable and beautiful child, who, with your help, will flourish and achieve all that she desires in her life. Thanks again for the update, and I wish you and your family only the very best. And please keep blogging when you feel like it!

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  3. Also, we both call the Queen City home! xo

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  4. Please continue to blog. I love all updates on you, Isla and your family. You inspire me.

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