The Begining of Yet Another Journey

So today has been a hard day. As those of you who follow the blog will recall, we have been noticing some eye issues involved in Perron's developmental delays since his two month well baby appointment. Well those issues led to us being evaluated for early intervention, and led early intervention to send him to the Eye Care Center at UAB. We saw a pediatric optometrist this morning.

I should have known right away that something wasn't right. UAB is a teaching hospital so we had a 4th year student and a 1st year student doing the initial exam. The first year took our history and I am giving her our long and sorted story of pregnancy and post-birth complications. The fourth year student came in and started trying to give Perron an eye exam. Yeah...good luck with that. They have all of these visual stimuli that they are trying to get Perron to look at. They started with a little tiny blinking star that they were trying to make him follow. In my head, I was thinking this is never going to happen. Of course I was right, and he absolutely refused to look anywhere near the star. So then they try some other test...nothing. So then they pull out these huge card that have really big black and white patterns on one side and are just plain gray on the other side. In the middle of the card is a little tiny hole. The fourth year student is looking through the hole, while the first year student is supposed to tap on the shoulder of the side Perron is looking at. Well guess what.....he did not look at the card even one time. So the fourth year student says, hold on, let me go get my attending physician. Dum...dum...dum...dum. That is when I knew that my day was not going to be as I had hoped.

The attending comes in and she tries doing all these tests and is looking in Perron's eyes with all of these special instruments and taking pictures etc, etc, etc. They dilate Perron's eyes and do someone tests and look at them some more with special instruments. While all this is going on, her assistant is bringing in all of these papers and talking about when appointments were available with all these different people. I actually thought they were talking about someone else, but unfortunately they were talking about us. So here is the gist of what we know. There is definitely something wrong with Perron's eyes. That is one thing everyone can agree on. Unfortunately that is were the information ends. She said that it could just be a really bad developmental delay and we were right on the cusp for when the neurons that send information to the occipital cortex come in. However, I asked her point blank if my baby was blind and she could not say yes or no. Not very comforting at all. Here is what we do know. He can see...it is not like he lives in a world of total darkness. We just aren't sure if his brain can process what he can see. For instance, we know for sure that he can detect movement. He LOVES looking at our fan more than life itself. The good news is the type of vision that detects motion usually comes in first. The bad news is that the area of the brain that processes that type of vision is not the same area of the brain that processes information that gives you the ability to understand what you see. Luckily the one piece of information we were able to take away from today is that structurally his eye is normal and he does have the physical ability in his eye to see.

So where does this lead us. unfortunately it leads us down another road of seeking more answers to more questions. On December 23rd, we have an appointment with a neuro-opthamologist at UAB. He is going to conduct two different tests. One that detects visual activity at the retinal level and then a second one that detects activity in the occipital cortex. The first test involves putting sensors in between his eye ball and his eye lid and doing some kind of testing. the second involves hooking him up to an EEG and testing brain activity when visual stimulation is made. This will help us determine if there is brain damage or some other kind of neurological issue that is impeding his ability to process visual stimulation. After that appointment, we are supposed to see the head of the Department of Pediatric Ophthamology at UAB on January 5th...so they are bringing in the big guns.

So....how do I feel about all of this....scared, nervous, shitty, curious, worried...all of the above. I was very hopeful that we were going to get some answers today. Instead I was told that we have a very complicated case. His prematurity and IUGR, my use of brethine and clindamyacin (for the Group B Strep) only complicate an already very complex puzzle. I am scared because I don't know if she knew that something was majorly wrong and that is why we are having to see two very big doctors and she didn't want to tell me. I am scared that my baby will never be able to see and lead a normal life. I am scared that we are going to have the tests and I am going to hear the words your baby is blind. I am scared that we will do the tests and they still will not be able to give us the answers we are looking for. I am scared. I am overwhelmed. I am jealous. I am jealous of all the mother's out there with "normal" babies. I want to play with my baby and have him play back. I want to look at my baby and have him look back. I want to come into a room and have my baby look at me. And I am scared that I might never have those things. I am tired. i am tired of having to turn every interaction with him into an evaluation. I want to be able to sit with him and play with him like a normal mom and not have to be constantly noting in my head what he is or is not doing and wondering whether that is normal. It is exhausting. It really is just a lot to take in at one time. I can't imagine having to wait another five weeks for answers. The doctor we saw today said she would personally email the doctor performing all of the testing and see if there is any way they can move the appointment up. We will cross our fingers.

Okay, so I have some very specific prayer requests. First, please pray for Perron's eye sight. Right now, best case scenario, we are looking at just a developmental delay. Please pray that that is all this is and that he is not blind. Second, please pray for all the doctors treating Perron that they will have wisdom and guidance in knowing what is wrong with him and the best way to treat him. Third, please pray for Stephen and I. I can't even begin to describe what it feel like when you are told your baby might be blind. It is not something I would wish on my worst enemy. please pray for strength, courage, wisdom, and comfort as we start this journey. Please, please, please pass these prayer requests and our story on to anyone you know who might join in praying for Perron.

We love you all and we thank you for your continued love, support, encouragement, and prayers.