The Blinking

I took a little break from writing. Mainly because softball took over our lives but also because I have been emotionally drained. I have some catching up to do...

A little over a week ago I brought Alexis to the doctor because of her eyes. I wasn't happy with how the appointment went or with the doctor's diagnosis. After barely looking at Alexis' eyes or listening to me, the doctor said Alexis had allergies. He gave us eye drops to use and said that would make it better. I knew it wouldn't though because I was already putting allergy drops in Alexis' eyes and using oral medicine. They made no difference.

The weekend after that appointment Alexis had a softball tournament. Alexis had two games on Saturday morning. She was able to play the entire first game, without any aches or pains. A couple hours later she had a second game. During the second game those scary chest pains returned. She was short of breath and kept saying her chest hurt every time she would breathe in. After resting for a while she started to feel better. This game ended up being one of the longest games ever. It wasn't raining, but there was thunder. Every time it thundered they would have to postpone the game for 30 minutes. This kept happening. So by the time they really got to finish the game, Alexis was able to play again. They finished off this game and we headed home for the night.

We had the girls in bed early because we knew the next day would be another long day in the sun. Scottie and I were relaxing on the couch when we heard Alexis start yelling for us. As we got up to go into her room, I saw her get out of her bed then fall back down to the floor. She curled up in a ball and started screaming. It was the stomach pains. They were back and worse than ever before. She also said the chest pains were back and for the first time she had pains in her back. Nothing I was doing made it any better. I was so scared so I called my mom like I always do. She said she would come right over. Luckily, she only lives a couple blocks away so she was here in minutes. Nothing she did for Alexis made it any better either and the pain wasn't lightening up at all. We decided to take her to the emergency room. My sister came with my mom so she was able to stay with our other two daughters. Scottie carried Alexis out to the car and we left right away. My mom left right behind us.

When we got to the hospital they took us into a room right away. Before we knew it the doctor was with us. At this point Alexis wasn't screaming or crying anymore, but the pain was still there. We told the doctor how Alexis was just in the hospital about a week before and they determined it was constipation causing all of the pain. The doctor examined Lex but decided not to take more x-rays or blood work. She was just going to look at the results from the prior week.

The doctor determined that these pains were still being caused from the constipation. She thinks the chest pains are from gas. Then she went on to tell me different foods and substances that could cause the gas pains. She named vegetables, fruits, fibers, spicy foods, and a few other things. When we thought about it - Alexis had all of those within the past couple days. Not only did she eat tons of vegetables and spicy foods, I was giving her chewable fiber pills THREE times a day! I felt horrible, to say the least. I thought I was doing the right thing by trying to help her with the constipation, but really I was causing Alexis to have gas pains.

We also asked this doctor about Alexis' eyes while we were there. I explained to the doctor how Lex's pediatrician said it was allergies. After she examined Lex's eyes and face, she determined right away that this was not allergies. She said she wasn't 100% sure of what it was but that it could be a sinus infection. She prescribed Alexis an antibiotic and told her to try this to see if it makes a difference. She said if the antibiotics don't work, at least we would have eliminated the two most common causes for the pains she was having in her face and eyes.

Although I didn't get all the answers I wanted, I was happy to at least be heading into the right direction. I knew now to stop giving Alexis fiber and to watch what she was eating. I was hoping the medicine would help her eyes and face so we didn't have to go any further with that.

I was optimistic.

It's been a little over a week now. I stopped giving Alexis the fiber pills and she hasn't had the chest pains at all. The stomach pains still come and go but not nearly the same as they used to. After taking the antibiotics for the sinus infection, Alexis' face is feeling a little better and her eyes aren't so red and swollen. But, Alexis is still blinking a lot. All day, every day. Although I'm glad the pain has gone away, I'm still very concerned about the blinking.

The other day I took Makenzie to the doctor for her 9 month check up. The appointment was with the same doctor who originally diagnosed Alexis with the lyme disease. Alexis didn't have school that day so she was with me for Makenzie's appointment. The doctor was happy to see Alexis. Although Lex was there a week earlier, she had to see a different doctor that day. We filled the doctor in on everything Alexis has been going through. I didn't have to tell her about the blinking - she noticed herself. She said she didn't think it was allergies or a sinus infection. This doctor thinks it's a tic - caused by the neuro-lyme disease. She said to take her back to her neurologist because he would know best.

After hearing that I felt so torn. If it was a tic - like Tourettes Syndrome - it would be one more way the lyme disease has hurt my baby. This list is getting too long. I would much rather it be something that a simple antibiotic could cure - but obviously that isn't that case. Since hearing that, I have been so upset every time I look at Alexis. The blinking is so obvious and I know everyone around her notices it. It's got to be so humiliating for her.

This morning when I woke Alexis up I crawled into bed with her. We were just laying there chatting. At first Alexis still had her eyes shut but they were still making the "blinking" motion - every couple of seconds her eyes would squeeze shut even more. Lex used to tell me that she blinked so much because the light was bothering her eyes - but this morning her eyes were shut and they were still blinking. It couldn't have been because of the light. While we laid there I asked her if she was making her eyes blink so often or if it just happened. She said she didn't really know. I asked her to try to start paying attention to it the next couple days. I told her to note if she is doing it because her eyes feel dry, or itchy, or if it's from the light - or if she really just has no control over when it happens. I told her that will just help us explain it to the doctor. And I promised her that we will get to the bottom of it. (fingers crossed)

I can't stop thinking about Alexis' blinking eyes though. Last night before she went to bed she was telling me a story and I couldn't even focus on what she was telling me because I couldn't stop thinking about her big beautiful blue eyes constantly blinking the entire time she talked to me. I wanted to cry but I knew I couldn't. After she went to bed I went and laid in my bed and cried. I feel so helpless. What if this is a tic? What if it doesn't go away? Now she wouldn't just have a silent disease - where no one could see her suffering - she would have to deal with something so obvious to everyone around her.

When I woke up this morning I found out that a young boy in our town took his own life. My heart aches for him and his family; may he rest in the sweetest peace. It really got me thinking. There must have been something so awful going on in his life that he really felt there was no other way to get around it. I can relate. I felt that way many times. I didn't have the easiest life and I hit rock bottom too many times. Luckily - I've always pulled myself through. I have spent many years trying to protect Alexis from feeling that way. I never want her to feel like there is just no other way out. I want to make her strong enough to get through anything life throws in her way. The problem is - there is way too much hatred and bullying going on in the world. It makes me sick. Not only do I want to protect my kids form being bullied - I want to do everything I can to make sure my kids don't turn into bullies.

When we first moved back to NJ, there were boys in school who called Alexis fat. She never told me about it - I had to find out myself. I started to investigate after Alexis wasn't eating as much. She went from being the girl who would eat 2 slices of pizza to the girl who barely ate a half of a piece. Once I noticed the change in her eating habits I asked her about it. She just blew it off like it was nothing. After asking around I found out what these boys in school were saying and it killed me. I wanted to go to each and every one of their houses and scream at them. I was at that point that I realized Alexis needed a little more reassurance that she is beautiful no matter what anyone says about her. And not for nothing but Alexis is not even fat - she never has been. She isn't a skinny little twig, but she's no where close to overweight. My point being - if kids will make fun of her for something that is barely even true...what will they say when they really start noticing the blinking. With Alexis having such an obvious tic - I feel like she will be an easy target. The bottom line is that kids now-a-days are cruel, and there's nothing I can do about it. I just have to pray that this either goes away really soon or that I have raised Alexis to be strong and confident, no matter what other kids say.

Aside from the blinking, Alexis has been feeling pretty good the past couple days. She has made it through a few softball games with no pain at all and a bunch of school days. Her arm is almost completely healed from the PICC line now too. Although it's only been a couple days...it has been weeks since Alexis felt good for a couple days straight so what a relief this is. I'm praying that better days continue to come our way.