I've had a lot of people ask me about the details of Presley's surgeries so I thought I'd go ahead and explain them here for everyone. We know we have prayer warriors far and wide; some that know us personally and others that do not. We are humbled and grateful.

To backtrack a little since we now have a better understanding of Presley eyes, her retinas (the light-sensitive tissues at the back of the eyes which are essential for sight) were completely detached and crumpled up at birth as a result of an ultra-rare mutation. Michael and I now know we are both carriers of the LRP5 mutation and, together, we created a baby who we've recently learned is actually more like 1 in 50 million. I think for the rest of our lives we will ask ourselves how we could be so rare.

Taking you back to biology class, our bodies all have recessive genes; meaning they aren't showing or affecting us. For example, I have blonde hair so I could have received one gene for brown hair, which is recessive, and one gene for blonde hair, which is dominant. Michael and I both have 20/20 vision so FEVR is recessive in us, because we received one good copy of LRP5 from one of our parents. Right now, mutations in five genes are known to be associated with FEVR. It is very uncommon to match up with someone who also has a mutation on the exact same gene which is what makes these diseases so rare. Our bodies will naturally choose the better copy hence why Michael and I aren't blind and why the majority of people aren't born with hereditary disabilities. In Presley's case, she received two non-working LRP5 genes resulting in her being blind. Why she was born blind and hers is more severe than normal LRP5 FEVR cases, we have no clue. Dr. Capone's office is doing a study and paper on us. Because we both have to pass down our bad copy for it to affect the eyes, there is a 25% chance our future kids could have FEVR.

Since the mutation presented itself in utero, her eyes didn't stand a chance. Everything in her eyes was pushed forward and an excessive amount of scar tissue formed at the back of the eyes. She has had a vitrectomy on each eye twice (not laser surgeries). Because of the damage, Dr. Capone has to go through the front of the eyes. He had to remove the lens in both eyes in the first surgeries. With each surgery, he has had to take more and more of the iris so those pretty blue eyes are no longer blue. In every surgery, he is trying to safely remove as much scar tissue and drain as much dried blood as he possibly can to ideally allow her retinas to open and sink back and ultimately attach to the outer edge of the eye on some level. Think of a flower blooming. This is essentially what her retinas are doing. So far, we've seen that her retinas are slowly opening and sinking back, but more scar tissue is appearing, which is why we've had to have multiple surgeries. To see light, you just need some part of the retina attached. You do not want to touch the retinas though, so this is where it gets very meticulous. The scar tissue and retina are the same color so he has to carefully decipher what is scar tissue vs. what is her retina, and there is always the risk of losing the eye all together. Not to mention, he is working on tiny eyes. God bless those hands.

In January, Dr. Capone first did the Exam Under Anesthesia. He always does this so he can take a look at the anatomy of her eyes to decide if it is the right decision to operate. He came out to tell us that surgery was a go, and he was elated with what he had seen her eyes do from the first surgeries in October. When he actually went in to operate, though, on her right (better) eye, he thought we had won the battle but lost the war. Her retina was opening and sinking back as much as they could have hoped for, but he could now see that there was no blood flowing to the retina; meaning the retina was underdeveloped and she would never see light. The Fellow asked Dr. Capone why he wasn't stopping there. Something in Dr. Capone had to keep going. By the grace of God, Dr. Capone kept going. An hour and a half later, blood vessels appeared. When Dr. Capone came out after the surgery to let us know how it went, even he had goosebumps. The smile on his face gave me an indescribable feeling. No other doctor would even operate on Presley initially because her eyes were so damaged and thus deemed inoperable, and we are certain no other doctor would ever spend that kind of time clinging to hope like Dr. Capone did. If he had stopped, she would live in darkness, and we wouldn't be where we are today. He does not give up on these kids until it is not safe to continue. He is a true servant of God, and we will never be able to thank him enough. He is a special, special man.

He always operates on the better eye first so he can learn before he tackles the harder eye. What a humble doctor. Even with his experience and expertise, he admits he can always learn more. The surgery on her left eye two days later went about the same as the first but the left eye didn't have as much blood flow...but there was blood flow. The catch after the second surgeries was that even with what her eyes were showing and giving him, Dr. Capone had no way of knowing if they were developed enough to see light. The blood flow was a great sign, and obviously crucial, but he still didn't know if they had all the "tools" needed. But he was optimistic. With what he was able to do in the second surgeries, he felt confident that her retinas should attach on some level within three months. This was already a miracle that her eyes got to this point from where we started regardless of the outcome. Dr. Capone even told us, with a huge grin on his face, to expect a very pleasantly surprised and happy Dr. Abbey at our one week post-op in Dallas. He was celebrating with us. Even if we didn't get light, her eyes were now in a position where she would be a great candidate for gene therapy if one comes available for LRP5 within her lifetime.

So we returned home to let her eyes heal and wait and see if we saw any reaction to light between February and March. It sounds a bit harsh, but we would shine a light every day in her eyes. There was absolutely no consistency. Some days we would start running for the champagne to celebrate and then would say lets try one more time....then nothing. When we went for our one month post-op in Dallas, Dr. Abbey agreed it was inconclusive. They were looking for her to squint which she definitely was not doing, but she would at times appear to get mesmerized by it and be super still (and this girl always likes to be moving). My mama instinct was telling me she did see light. I didn't know how well, but I truly believed she could see light. Dr. Abbey then referred us to UT Southwestern to have a VEP (Visual Evoked Potential) done. This testing is rarely used and come to find out is not entirely conclusive. They placed electrodes on Presley's head (pictures below) which recorded if her brain was receiving light. The results showed that there was a response in the right eye and no response in the left. What both Dr. Abbey and Dr. Capone have said is that this test does not quantify what she is seeing or how strong. You need to technically be still and keep your eyes open for the testing to be accurate. What this test does tell us is that her eye is talking to her brain (at least in the right eye) which is HUGE. Dr. Capone is not counting out the left eye yet. We know she sees light now for sure in the right eye. We don't know if that means she can tell a lamp is on or if it needs to be all the lights in the room on for her to see it, but we are celebrating light in whatever form that is!

I'll be honest, this Christmas season was especially hard. Trusting God takes on a whole new meaning when something like blindness happens to your child. Every church event or service we went to over the holidays seemed to put an emphasis on God bringing us out of darkness and into light. My family Christmas tradition is to attend the Gift of Christmas at Prestonwood Baptist Church which is where we grew up going. We've gone every single year since I can remember. This year, they changed it up a bit in how they told the story of Christmas and there was a particular emphasis on how we live in darkness until God brings us into the light and how you can't see in darkness. It felt cruel. There Michael and I were sitting with our completely blind, innocent four month old baby in between us who was living in darkness. Then a couple weeks later, the Christmas Eve candle light service at Watermark. Again, the same thing. I couldn't hold it together here. There I stood with my precious baby at my feet while Michael consoled me as I cried. My baby wasn't literally living in darkness because she was more of a sinner than my sister's baby. But she was living in darkness. I certainly don't expect churches to be overly sensitive to what every single person is going through, it was just unfortunate timing as I was still very fragile and very much still grieving. We serve a mighty God though and miracles do happen. Only 10% of the blind population see nothing at all. Presley is no longer among that number, and we are ecstatic. We were initially given a 0% chance at getting light perception. Dr. Capone gave us a 10% chance at best. It is a special thing when you get to be a part of blowing even the most skilled and educated doctors' minds. Happy tears all around.

We head back to Detroit at the end of April for an Exam Under Anesthesia with the possibility of surgery depending on how her eyes look. He may operate on one, both, or neither. We have no clue until he gets in there. This does not get easier, and I am already getting anxious thinking about it. Please pray for strength for Michael and I. We trust Dr. Capone and are thankful we can rest knowing she is in the most skilled and caring hands.

Presley is developing very well and has overall been happy during her one hour therapy sessions on Mondays. Her personality is coming out, and she could not be sweeter. Michael facetimes us every spare minute he has at work because he cannot get enough of her. She is so full of joy--I mean, have you seen that smile? She smiles with her entire face, and it is the absolute best.

Presley, I hope you know how much you are loved. I hope you know that you are not less because you are different. I hope you know you are capable of doing anything you set your mind to. I hope you know that your lack of vision does not define you. I hope you know that you are perfect because you are you. I hope you know that I am a better mom and a more empathetic person because of you. I hope you know that your dad and I will always be your biggest fans. I hope you know how much you changed our world for the better. I hope you know that we believe in you. You, sweet baby, are everything.