It’s taken me a few days to process my own emotions about our appointment and Demi’s future. I have had to work very hard to “get my mind right.” I know some people may not understand that and may feel “oh just let yourself feel the way you want” and things of that nature. That’s not incorrect but at some point I have to pull myself together. Find the strength within by relying on my faith to help me be strong, bold and confident for Demi’s sake.
Remember, nothing has changed for Demi. Demi’s world is still the same as it was the day she entered this world. Our perception of what her life and our life with her has changed. We are working through grieving that life we expected to have with Demi. I know with every part of me that we will look back and think how silly we were to be so worried and how much a blessing this challenge will be to us.
The eye surgeon told us that Demi’s case is pretty severe in reference to the effects on her eyes. She has scar tissue in both eyes and on the retina of each eye. Both eyes have scar tissue pulling on the retina causing the retina to be at risk of tearing. If the retina tears, the eye will likely not remain healthy. What does that really mean? Well, if the eye is not healthy, then it has to be removed. Obviously, despite her vision prognosis of this eye (which isn’t great), we prefer to save the eye as of now. This could change in the future but there are too many details to get into right now and it’s not really a decision we have to make right now.
So about surgery… The left eye also has scar tissue on the lens. Therefore, the surgeon suggest the possibility to remove some of the scar tissue to alleviate this risk. The surgery also comes with risks but at this time we think it’s worth it to proceed with surgery in attempts to alleviate some of that pulling on the retina – allowing the eye to remain healthy enough to grow. The surgeons plan is to attempt to remove some of the scar tissue off of the retina and the lens of the left eye. Hopefully this will then encourage the left eye to grow. Currently it is smaller than the right eye and we want Demi’s bones around her left eye to grow in comparison to the right. Assuming the left eye grows then we don’t have to consider other options (we didn’t discuss this too much for now because it’s not imminent so I don’t have details on that) to expand the bones around the left eye.
He can perform this surgery on Demi sometime in October. The delay is due to the policy at the facility in which he performs surgery on the age of a child at the time of surgery. If her eye needs attention earlier than October, we can perform the surgery early at another facility. The surgeon believes the equipment isn’t as good at the second facility, so we are praying the left eye does not get worse before surgery so that her doctor can have everything he needs to be as successful as possible. He is very confident in his skill but is very upfront about the risk of the retina tearing during surgery.
We asked him if she may regain some vision in the left eye from the surgery and he said it’s possible. Even though that potential is extremely minimal, there is potential!!! Big word to us! We have the highest expectations for this surgery!
So what is her vision as of now? Hard to say but as far as the doctors can tell, there is likely some peripheral vision in the right eye but we will have to see as time goes on. The left eye is much too difficult to determine right now.
So we will be praying specifically for the scar tissue in Demi’s eyes not to get worse. For the scar tissue to not increase the pull on the retina. For NO RETINAL TEARING. For no pain as the eyes grow.
Demi is taking her medications with minimal fuss and that’s amazing. She has some tummy issues due to the meds. We are praying for her tummy. Her biggest current hurdle is her neutrophil count. Neutrophils are what fight off any outside threat to the body – bacterial, viral and so on. We are working on increasing her neutrophil count by medications. She currently CANNOT be exposed to anything so that limits our activities tremendously. That’s hard for us but we are doing just fine keeping her safe. If her levels drop any further we will have to take a break from the meds and we don’t want that.
And most importantly, we are still believing God can work his miracles on our little girl!