Thursday, September 15, 2011

Nova Clinic results

September 15th
Today was Brody's big day. We were up at 5:45, had everyone fed and ready at 6:40, and off we headed to the University of Houston.
I must admit, I was blown away with the experience. Brody had 4 yes FOUR, doctors tending to him from 8am until 10:40am. They did so many test and it was amazing to see how at only 14 months old, they can find out so much about our little man's eyes. There were so many things Brody didn't respond to but there were so many things he did. He did decided when he was done working. After all, work isn't his favorite thing to do :)
When all was said and done this is the news we received: Brody is legally blind in BOTH eyes. The right eye is he best eye. He can see out of his left eye but it is shadows and outlines. The best way to describe the vision in his left eye is by using an eye chart- his is the second line of letters on the chart in the left eye.
 
The reason he turns that left eye in (crosses it) is because when it is turned it, he is turning it off since his right eye and left are so different. They did say they didn't feel like he would need to use a cain for walking. They do feel like his prescription is correct for his glasses. He would continue to get more near sited and the weird thing is usually if a parent is near sided then you have near sided children; Ricky is near sided. Weird huh? On with the really sad news: Brody will need a vision team. They feel like we should NOT do any surgery on his eyes for the crossing until it matters. This means whenever it starts to bother him because you will have to continue to do surgeries and that will create scar tissue. So, they think like 3rd grade, middle school, wedding day, those types of days because it is more cosmetic then anything. They also don't know how well the patching will do but told me to continue to patch that eye. That isn't the sad news- I'm already on setting that up but what is sad is that he will need that vision team throughout schooling. He will need to use things like magnifying glasses, binoculars, etc. And the one that killed me: Brody may very well be color blind. Look, I know there are so many people out there that are color blind and they are just fine but it is sad that the simple things in life won't be enjoyed the same way as you or I enjoy them. Remember him next time you look at something as simple as a green tree.
We will go back in two months. I'm so excited to have this clinic for Brody.
As Brody's mom, I'm so sad about this. You know I just honestly want my kids to not have to fight for the very basics that they've always had to fight for. Every time we get news that the kids will be a little different, I'm ok with it but I can't explain this feeling I get about the future and people. I honestly feel the comments, the looks, their peers and it puts so much pressure on me. I just feel so protective over them. I never treat Brody like he is different or any of that stuff. If anything, I push him to do more and more because he has to realize this world will be a little different for him and it will take him twice the work it would some average person. I don't know.... I just have so much concern about how I will protect my kids in the future. I don't know what else to say right this moment. I don't know how to express where we are as a little family with all of this but I do know this much. We are lucky. Brody is lucky- he still has vision while there are so many out there that have nothing. All I can think about is Brody's cousin Jayden and my best friend.

Wow, I just got a knock at the door and it was a lady from Bible study class. She just wanted me to know she is thinking about us and dropped off a basket of goodies for me. HOW SWEET!

Anyway, please keep us in your prayers. There is a plan and He has a path for us.

Krista


September 16th
Ok, so I've had time to gather my thoughts and here is where I'm at....
This SUCKS really bad for Brody. Really bad. I wonder about how he will do in school, how will he get a job, how will he be treated- all of those things. What I don't wonder is what I'm going to do to help him. Tomorrow, I will be contacting every single person needed to get his vision therapy started by this month. I will continue to patch his eye and follow up with his normal eye doctor and will go back to the NOVA Clinic in November. As far as when he is in school, I just hope that people will be accepting of who my kids are, how wonderful they are, and what they have to offer this world. I do realize that I will need to be on top of his school to make sure all of his services are in place but I've already done that once in my lifetime for a undeserving brat child that was not mine and I know I won't have a problem at all getting my son's services in place.
Maybe I'm changing more, maybe I'm hardening as a person. I'm not sure right this minute but you know what? I'm living this every single day and it is what it is. I take on their health issues and struggles. These things are so personal to me. Every single time I hear a diagnosis I feel like it is a personal attack. Sometimes I just want to scream F%$&! BUT, I'm not going to. I won't give in. We've come way too far!

KP

one year

This week marks one year since Madi has been home from the hospital. She came home with the apnea monitor and continuous oxygen. What a difference a year makes!
  
That was a preemie outfit! 
I finally was able to live a little one year ago. She taught me so much and I will always be so thankful for those weeks her and I had alone. 
Madi, you have grown so much in one year. I'm just so lucky you are mine. You are my girl for sure and I just love how you favor me. I hope that always stays the same. You help me find a smile and a laugh in our hard days. I can't even get on to you when you do something you really shouldn't because you just look at me and smile and crinkle your nose. You are a hoot! Gosh Madi, I just couldn't love you anymore than I do and I hope you always know and feel how much I really care and love you. I just pray that I can be the mom you deserve. You are one special girl.

In a couple hours, Brody will have his eye appointment with the Nova Clinic. I hope we get some good news because we could sure use some. 

I'm so glad I was reminded that God understands you on your bad days. It seems like this month has been horrible and it's only the 15th. I wish that the kids' health care providers would give the same amount of effort they would give to their own kids and stop the careless mistakes. It is so exhausting to be on such high alert 24/7 with their care. A year later I must admit, I'm exhausted. I've hit a limit. The demand of every day life is so much. To unload and set up the stroller, get the kids out of the car into the stroller, fight elevators, people invading our space- touching my kids- being in their faces, second guessing every word the doctors say because lets face it, what doctor has not made mistakes with my kids at this point, therapy, trying to occupy Madi while the other two have their doctor visits, feeding them while out of the house, loading them back in the car, taking the stroller apart, putting it in the car, the hot car, I mean it just goes on. I don't want to sound like a complainer but I'm physically and emotionally exhausted. I've ran a marathon for one year and 9 months. I just need to rest for a second. Those fairytales of a perfect pregnancy with no complications, perfect birth, healthy baby, etc. well, you just have no clue to be quite honest. But I must admit, I'm far more blessed. I have 3 babies that are so amazing and are just wonderful little beings. So, I must push through this and keep on keeping on.

Krista