Layla's Year

All year I have debated about blogging about what Layla has gone through this year. I would start to, and then I could never bring myself to post it. Now that we are at the end of this journey it is much easier to talk about. So here is the other reason why we have been so busy...

Layla turned two the middle of January. We went for her well check and everything was great, except for the usual concern over her growth rate. The concern the doctors had was not that she is small, but that her growth stops and when it starts again it is not a huge growth spurt. Her doctor made a growth chart for Layla to show the curve that she should be following. Instead of curving, Layla's growth just goes flat for up to six months at a time. Anyway, it was the usual "lets give her a little more time" thing.

About two weeks after that Layla started complaining that her left eye hurt. It was usually when she was tired, so I just kind of brushed it off as having tired eyes. Until it started waking her up at night. She would wake up screaming about her eye hurting. I took her to the doctor, where we discovered she had a massive ear infection on that side. The doctor thought that the ear infection might be causing the pain, so he prescribed antibiotics and sent her to an opthamologist. The opthamologist looked at her eye and said it was fine. She said it was not protruding so she didn't think there was reason to be concerned about tumors. She agreed with the doctor that it could just be from an ear infection.

Kelly and I felt much better, although there was this nagging worry in the back of my mind that I could not get rid of. Then a few days after the opthamolgist appointment we were all driving in the car. We turned a corner and the sun hit Layla right in her face. She freaked out like I have never seen anyone freak out. The pain was so apparent. It was beyond heartbreaking. Kelly and I immediately knew this was more than an ear ache.

We called the doctor right away and got her in the next day. Dr. A. looked at her ear and said the infection was gone. Dr. A. is a pretty mellow guy. He loves his job, and always seems to know the answer. I have never seen him as shaken up as I did at that appointment. Kelly and I were more worried about his reaction than what he was saying, because honestly it did not make sense to us. He was talking about imaging, and tumors, and pseudo tumors. I simply could not process it. There was no way he was talking about my daughter having a tumor.

We got a referral right away to a pediatric neurologist. We saw him that afternoon. He ordered an MRI and MRA and discussed various possibilities. We left thinking the tests would be done right away. Nope, they were scheduled for over a month later.

Meanwhile, the pain worsened and moved to both of her eyes. There were days were she would just lay in bed for four or more hours. Then one morning I went in to wake Layla up only to discover her left eye looked bruised. The only way to describe it was that there was a weird puddle of blue around her eye, like blood just kind of pooling around her eye. I felt like a horrible mom, because it was so awful looking that it made me gag. I woke her up and she sat on my lap while I frantically called Dr. A. His staff pulled him from the room he was in and put him on the phone with me. By the time he got on the phone her eye had went back to normal from her sitting up. I was told by Dr. A that if it came back and did not go away to take her to the pediatric er.

I also called the neurologist and was told by him to not let her lay down. This freaked me out. Why couldn't she lay down? And what the heck was going to happen if she did? The neurologist got her in for an appointment and could see some of the blue around her eye. We got a rush put on the imaging tests.

The day of the MRI was one of the hardest. Definitely not the hardest, but one of them. We dropped Cal off with my sister and headed out for the test. Because the machine is loud and scary they had to put Layla under so she would be still. She was so happy and loved all of the attention from the nurses. And then the anaesthesiologist came in. And I hated him. I know that is unfair. I know he was just doing his job. But I despised him. He tried for at least fifteen minutes to stab an IV needle in my daughter's foot. And I had to help hold her down the whole time. At first she was kicking and screaming and yelling. It took so long that she finally gave up and just cried and asked me to make it stop and take her home. And then he finally got it and she was out.

And they took her. I thought I would get to go with her but they didn't let me. I knew she was under and had no clue what was going on, but I was so scared for her. So scared she would wake up in the middle of the test and I wouldn't be there for her.

The nurse was really nice and updated us every fifteen minutes. They did an MRI with and without contrast and a partial MRA. They couldn't do the full MRA because she was too little to be out that long. She woke up a little before we left. When we got home she slept for maybe a half an hour, then woke up and was her normal self. Thank goodness.

The results from that came back fine, which was wonderful news. I was still celebrating that when the neurologist then mentioned neuroblastoma. This is a childhood cancer that she had many symptoms for. The tumor is typically found in the abdomen and chest so the MRI would not have shown it. So we made an appointment with a pediatric oncologist.

That was the hardest day. Not even the hardest day of the year, but the hardest day of my life. No matter how hard I try that day is etched in my mind and I cannot erase it. I was not prepared. I had been so consumed with my worry for Layla that I did not think about what this visit would be like. There was my sweet little girl with her wild, curly, uncontrollable hair in the middle of these beautiful bald children. They were so young and they were so sick. And their parents, I cannot begin to imagine their grief, sorrow, and hope. Their strength, their weakness, and their fears. And on the wall in big vinyl letters was this beautiful and terrible quote by A.A. Milne, from Christopher Robin to Pooh, "Promise me you'll always remember you're braver than you believe, and stronger than you seem, and smarter than you think." I am not stronger than I seem. I am so thankful that was the only visit we ever had at that office. I am not as strong as the parents that were there.

They did blood work at the office and it came back great. They sent us to a lab for blood work and a urine test, which also came back great. I am so grateful that my daughter is sitting on the floor teasing and laughing with her younger brother right now.

So we were back at the neurologist who told us to do Motrin around the clock for three days to get rid of the blue around her eyes. Easy enough. Then he sent us to a pediatric cardiologist. And new fears and worries kept popping up.

The Motrin worked. The blue went away and never came back. We still have no clue what it was. The cardiologist was amazing. He even gave me his email address so I could keep him updated on Layla. After their tests we were told her heart was fine, again thank goodness. Layla loved the tests done there. She loved being able to see her heart on the screen and look at the different colors.

So back at the neurologists office again, he sent us for an ultrasound of her neck to check on a bruit. I guess a bruit is a sound heard in the arteries which indicates a problem. We scheduled the test and unfortunately Kelly could not go with me because he had a huge meeting at work that day. My sister went and waited in the waiting room with Calvin. The tech took Layla and I back and expressed concern several times on doing a test on someone so young without sedation. I had no clue until he told me, but this ultrasound takes 45 minutes and the person needs to lay absolutely still. Well, I know my daughter and insisted to the technician that he do the test without putting her under. I had faith in her and there was no way I wanted her sedated again.

He did the test and told me about twenty times that Layla was the youngest person he had ever done the test on. This test was in April or May, so she was two and a few months. And she was awesome. I was so proud of her. She was scared, but they let me lay on the bed with her. She did it. She laid perfectly still for 45 minutes so the technician could get good pictures of her neck. After we finished the test the technician said he had not done the test on anyone younger than 40.

Those results came back good as well. I was so relieved that all these tests were coming back good, and I was so frustrated that we were putting her through all of this for nothing. And she was still screaming in pain about her eyes several times a day. She hated to go to Target because of the fluorescent lights, they made her eyes hurt. She refused to take her sunglasses off inside. She rode in the car with a towel over her head. It was maddening.

The neurologist decided it was migraines and put her on migraine medicine. We tried that and it really did not help. I had agreed that it was migraines, but it still bothered me. I found myself typing in all of her symptoms into countless search engines. And then I came across something called Sensory Processing Disorder, SPD. It sounded just like my daughter. I brought it up to the neurologist at the next appointment. He said it was worth a shot and sent her to an occupational therapist. At this appointment he noticed that she "W" sits. I had mentioned this to her pediatrician because I knew it wasn't good. He wasn't too concerned thinking she would just grow out of it. Well, the neurologist was extremely concerned. He said it can do a lot of damage to her hips. So he wanted her seen by a physical therapist as well.

We made appointments for PT and OT at Children's Therapy Center. The PT appointment was first. The therapist sent us to a pediatric bone surgeon for x-rays of her hips. Her hips are fine, but her thigh bones are both rotated in 20 degrees, which is why she sits in the "W" position. He said this was not too uncommon and that she should outgrow it by the time she is eight. If not she will have to have surgery. She also has poor muscle tone, which is causing the arches of her feet and her heels to collapse. We need to get inserts for her shoes and that will help with that. As her muscle tone increases this will get better. If she were to be put in braces she would end up pigeon toed because of her legs. This is totally unrelated to her eyes, but nice to know. The arches and heels are not really that big of a deal. If she plays sports in school she will just get tired of running faster than the other kids, but the inserts will help with that.

So, back to OT. She has been going for about two months now and...her eyes have only hurt twice! What a simple problem with an easy solution. She does not process sensory input the same as other kids, so light makes her eyes hurt as well as too much visual stimulation. This center does not do vision therapy. My sister-in-law told me that there is not anyone in Nevada that does vision therapy (she is going to school to be a physical therapist and she works for a therapist). The OT that Layla is seeing, Dee, is amazing. She said that working with Layla on her other senses would improve how she processes all of her senses, including visual processing. At it is! Dee has a few other things that she is working with Layla on, and Layla adores her. And Dee loves Layla too. I am excited about the changes I can see in my daughter and I know that things are only going to continue to improve.

I am so grateful. So grateful that my daughter is healthy. So thankful that she is feeling better and back to driving me insane! I am so happy that she is a part of my family. She is so sweet and spunky. I wouldn't trade her for the world (although some days I may threaten to).