Friday, November 20, 2009

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.

23 comments:

  1. Oh Julia, I am so sorry to hear about this. Please know that I completely understand all of the feelings you are feeling and that they are perfectly normal. I will keep you guys in our prayers and please let me know if you need anything!

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  2. ohh.. I am so sorry to hear you are going through all of this! I couldnt imagine how hard this must be for you. Please know that we are praying for you!! Just know God is in control of this. Hang in there hun

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  3. Honey! I love you and Stephen and Perron too, of course, and will be praying, praying, praying. I know there is a lot of unanswered questions but one thing I KNOW is that Perron is armed with the best parents! You will get through this. I am here if you need anything!

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  4. Julia,
    Perron, Perron's vision, Perron's doctors, you, and Stephen are all in my prayers. This situation and the terrible waiting between appointments must weigh so heavily on your heart, but you are an amazing mother and Perron is a fighter. Hang in there and let us know of any news. Prayers are coming your way now and each time I pray...

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  5. I'm so sorry you're going through this. I can't imagine. Your family will be in my prayers.

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  6. Found you on blogfrog and will keep you in my thoughts and prayers. I am so sorry that this is so scary and wish your appt could be sooner. Waiting is sometimes the hardest thing to do.
    Trying to think positively (for and with you) - maybe the wait is God's way of having Perron age a little bit so he is more successful.

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  7. Prayers for you, Perron and all involved. I was born with a cataract, so am blind in one eye. St. Lucy is the patroness of the blind, so sending a special request to her!
    -Becca W.

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  8. I can only imagine how scared and frustrated you are. I'm sure the not knowing must be the worst part. You and Stephen and your beautiful baby are foremost in my thoughts. He is so lucky to have parents like you and so many people loving him and praying for him, not to mention access to some of the best doctors and technology in the world. Hopefully today will be the worst day you have and good news will follow shortly.

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  9. Found you through the BlogFrog and now am following.
    Sending prayers for your baby Perron, your family and the doctors.

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  10. I just found your blog through your visit to mine. I'm so sorry you have to go through this, my daughter was also a preemie (2 lbs. 8 oz. due to IUGR and PP). It is a very scary thing, but it sounds like you have wonderful doctors working for you and Perron. Saying prayers for your family and your doctors. Hugs!

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  11. Sorry, I stand corrected, I found you through BlogFrog.

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  12. Julia, I am sorry your family is having to go through all of this. I am praying for Baby Perron and for his Mommy and Daddy. He is such a sweet little boy and I know you want the best for him. Love, Whitney

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  13. Goulia and Stephen,
    We are all praying for you here as well! Babies are such amazing, resilient creatures and Perron is still a wee little thing and I know you guys will do everything in your power to make sure all of his needs are met---and then some! He is lucky to have you and you are lucky to have him as well! I love you guys! Megan

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  14. Found your blog through MckMama. Just wanted to let you know that I have a friend who is blind. He recently graduated from Rice and is about to graduate from law school. He leads a very normal life and is extrememly well adjusted. Wanted to let you know that even if your worst fears are realized, that there is every reason to expect normal things for your child.

    Hope this helps.

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  15. Hello Julia .... I can imagine my youngest is believed to have CVI he is almost two and 1/2 and I have some tips I can give you as well as accomplishments and the hope to know that despite where Perron's vision goes - you will make it through! My e-mail is adoptwithlove2003@yahoo.com

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  16. Julia- you are in my thoughts and prayers, and I'm so sorry you and Stephen are having to go through this! But you both are strong people and I know you will get through anything together and Perron has the best parents who love him! The waiting must be awful, but I will be praying that you get answers soon and that they are the answers you are hoping for! ~ Melissa

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  17. Julia- thinking of your family. Hopefully it is a really bad delay. I hope they figure out what is going on so you can stop worrying about it and know what you are dealing with.

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  18. I have not been here before, but what a time to come visit. I will certainly pray for you and your son. I can only imaagine the torture of having to wait for answers. I am not a good personality for waiting, so it would be horribly hard. I pray for your son's sight, and that this is not anything that can not be overcome!

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  19. Julia, you are such a brave mama! I am so proud of you and all you and Stephen are doing to help Perron. Trust in the Lord. He will take care of Perron in a way nobody else can! We love you. -The Connors

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  20. I've been thinking about y'all a lot. I'm continuing to pray for you and your upcoming appointments. You're an amazing person and mom. Hang in there, and keep enjoying that precious baby!

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  21. Oh Julia...I will keep you, Stephen, and precious little Perron in my prayers. You are doing an amazing job with him and are being exactly what he needs which is a wonderful, supportive and unconditionally loving Mommy. Hang in there!

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  22. Hi,

    I found your blog and story from MckMama's forum. I have dear family friends whose oldest child was born 100% completely blind. They had no foreknowledge that this would be the case. Obviously their situation is a little different, but the good news is that their child is thriving. They also keep a blog if you're interested (http://www.movingmountainshubleystyle.com). They are a very unique family and are open to sharing their own experiences. I can't imagine what you're feeling at this point, but I hope that you can be encouraged through their journey.

    Ruth (ruthieb729@gmail.com

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  23. Julia, I am so sorry for all that you've had to go through. I'm sure you've heard this a million times already but God will never give you more than you can handle and you've already done so well with a tough pregnancy and first few months. I will most definitely share this with my family (as I have been for months) and know that you and your family will remain in our prayers! Love to you all! Hang in there, pal!

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