Demi’s Vision: What We Understand Currently

Demi’s update with her retinal surgeon went wonderfully well. He had nothing to report and that is what we expected. Her retina is stable as is. He bumped our visits back to every 6 months. We will see Demi’s ophthalmologist every 6 months as well. so she will end up seeing one of them every 3 months.

People often ask me… How is Demi’s vision? Y’all, we still don’t really know. The proof is in the pudding. At this age, she does really well but we can see when and where she misses some things. We have started working much harder with her cane use as it really is imperative for her. What we do know…

– She has scar tissue through both eyes in her central vision. You can’t see through that. It’s like an thick opaque web as far as I understand.

– So that leaves her with peripheral, right? Well in the right eye she has a bigger mass of scar tissue that is also in the peripheral and then in both eyes she has retinal scaring that leaves her with black spots. And she seems to not engage her left eye often. So we may patch to help that so we can keep the brain receiving signals from it. The eyes are actually a case of “if you don’t use it, you lose it.”

– So her vision is like puzzle pieces and she is constantly putting the pieces together to see. Using vision like this is tiring. So sometimes she closes her eyes instead. You will likely notice that!

Demi was using the inside of her right eye a lot but lately we have noticed she is also using the outside of the right eye. We aren’t sure what this means exactly but she will see her ophthalmologist in the next few weeks to help us get a good idea on why… hopefully. We have also discussed surgery to tighten the muscles of her eyes to help with some of the crossing and nystagmus (shaking) she has. He is a little apprehensive at this current moment, as are we, simply because we don’t want to shift her best field of vision with her totally understanding what we are doing. So we may wait on this.

Christmas was AMAZING this year! We had a blast with the kids. We had a small hiccup with our new trampoline (bent pieces) but we will get a new one ASAP because both kids loved our precious one that Ida destroyed.

BEST NEWS !!! We leave for Disney next week!!! My kids are pumped!! I think Disney will actually be a great time for both kids! Demi is such a rough play/flip over/spin in circles kid (sensory seeker) and Disney will provide her all of that! Wish us luck!


One Comment Add yours

  1. Praying for continued healing for your little girl. Have fun at Disney! We are taking our kids to Epcot at Disneyworld on Saturday. We live 2 hours from Orlando. The kids are excited. God bless you all!

    Liked by 1 person

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