My experience of tragedy, trials, and triumphs!
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Wednesday, February 23, 2011

Cameron's Story

Cameron was born on July 2, 2008. He was a beautiful happy baby. Cam is the ninth boy in our family, but the first born to his parents Curtis and Julie. We were so happy to add the "ours" to our "yours, mine and ours family". We blended families in 2006 both having 4 sons. All of the boys were so excited to have a new little brother in the family.
I delivered Cameron after a 13 hour (natural) labor at 2:07 weighing in at 7 lbs 2 oz. on 7-2-08. I thought he must be a very lucky baby to have that many 7's. Everything went great. Cam was darling. We had a normal 3 day stay at the hospital and came home to love our little one. Cam was my 5th baby so I figured I knew what I was doing. He had a very hard time nursing though. My milk wasn't letting down for him and he had a very hard time latching on and sucking. I took a lot of supplements to enhance my milk but he wasn't gaining weight. I was determined to nurse so my Doctor allowed me to continue to try everything before we went to bottles. There were times I sat and expressed milk into his mouth trying to get him to nurse better. When he was about 3 weeks old he started fussing. Up until this point he had been very calm and easy. I knew he was starving and I gave in and gave him a bottle of formula. I have never been able to pump so I knew that wasn't an option. It took Cam about 1 week to completely refuse to try to nurse anymore. I accepted my fate of bottle feeding and we moved on. (I have to admit it was so nice to bottle feed a baby!) At the time we didn't think much of this problem. I figured it was either me, or maybe he was just a little lazy.
Cam didn't smile as soon as my other boys and not as often but he eventually did. He was the best sleeper I had. Very content and quiet little boy. I figured he accepted his fate of having a lot of brothers and was happy to be along for the ride. He was a little late with some of his mile stones but soon would get to them. The first five months his head would always flop to one side and the back of his head was a little flat on that side. It was very difficult for him to move it to the other side. But this too soon corrected itself.
Cameron was a little clumsy...well very clumsy. When he began to crawl he would very often fall forward and hit his head on the floor. He rarely cried or even noticed it, even when bumps and bruises were left. He would just pick himself up and continue on his way. I remember my brother commenting on how he was the toughest little kid and that he knew all his boys would be that tough. He fell all the time and would run into things that were right in front of him. This bugged me but the Doctor felt like he may just have low tone and would grow out of it. When he started to walk it was much different than my other boys. His first steps were on Halloween. He was 16 months old. Usually after the first steps it is only about a week or so and they are all over the place. Cam stayed with his 2-3 steps for 2 months. It was around Christmas that he started putting several steps together. He was 18 months old. I was concerned again but, he was walking so there was no real reason for alarm. I knew at 18 months he should have several words and maybe even be putting 2 words together. He wasn't, but he had been focusing so much on walking. The Doctor and I figured he would start picking up words now that he had the walking down. He stayed VERY clumsy. Falling all the time, walking into walls, falling off of everything. We made a few trips to the Doctor thinking he broke his neck or had a concussion. Everything was always fine. He didn't start talking. I was always worried about him becoming the spoiled youngest child that didn't need to talk because his brothers did it for him. I tried to avoid letting him grunt and point. I taught him a few signs like please, thank you, food, and drink so that he at least had to ask. He got very good at getting what he needed on his own. He would pull the stool over to the cupboard, climb as high as he needed and get down what he wanted. He would bring me boxes of cracker or his sippy cup so I knew what he wanted. I would try to have him say the first sound of the things he wanted as well. With all our efforts he didn't talk.
When he turned 2 he only had a couple words and never used them on his own. He could say mama, but only when prompted to. I hadn't ever thought about the fact that he never really even babbled like a normal baby would. I always just enjoyed how sweet and silent he was. At his 2 year old well child I lost it in the Doctor's office. I cried and cried that I knew something was wrong I just didn't know what. I had had a bad feeling since I knew that I was pregnant with him and it never went away. I knew I was probably just looking for my next trial and was always worried about something bad happening. (My first husband died and after something that traumatic you tend to get a little paranoid.) The Doctor reassured me that we wouldn't miss anything and that he was just fine. We decided to start Cam in the early intervention program and get him some speech therapy. They tested Cam for several things including his hearing. He scored high in everything except his expressive language. His hearing was perfect. They did notice a tongue forward motion and said that his speech delay was most likely from low tone in his mouth. I now knew that was the reason he couldn't breastfeed. Cam had his tongue sticking out all the time. I just thought it was a cute habit, he had done it his whole life.
At first speech therapy was 2 times a month. Cam enjoyed it and would occasionally even get a simple word like "up" out. Usually he didn't get the word we were looking for, but he always tried. We tried strengthening his tongue with hard licorice and beef jerky. I took away his binki and switched from regular sippy cups to straws. After about 4 months I was in his nursery class with him at church. We were sitting down in a circle with the other kids. There was a little boy that is 4 months younger than Cameron and was premature and has several delays look up and say, "I want mama". Well, that was it. I knew something had to be going on with Cam. He had been in speech for 4 months and had not progressed at all. I talked to the speech therapist and told her I was getting very concerned. She agreed and expressed that she was concerned as well. She did some research and some testing and decided that he most likely had Speech Apraxia. I took him to another speech therapist and she confirmed the diagnosis. Speech Apraxia is similar to an adult who has had a stoke. He understands everything and knows what he wants to say but can't get his mouth to say it. They also noted that he had overall low tone in his body, especially in his mouth.
I called my Doctor with the information and diagnosis and he wanted to see us immediately. He was concerned with the diagnosis saying, "it is very rare and a brain issue". I said I know that, but told him I had a second opinion and it was really the only thing fitting. He decided to order an MRI immediately to rule any brain issues out. Apraxia would not be picked up on an MRI but other things would be. We did the MRI 3 days later. I got the phone call from my Doctor Dec. 21. "The MRI came back abnormal" he said. My head started spinning. "The neurologist thinks he may have a seizure disorder and we need to do an EEG. Call Primary Children's hospital tomorrow and set it up." I called the next day and we set it up for the week after Christmas. It took 1 week to get the results back. They were normal. We got an appointment with the neurologist 2 days later.
I went in assuming he was going to inform me of the many months of tests we would do on Cameron to figure out what was wrong. The Doctor came in and pulled up Cam's MRI. He said, "do you see these two spots right here in his brain?" We could see them, they were very obvious. "Well they shouldn't be there. Your son has Periventricular Nodular Heterotopia." He went through what that meant. Apparently when Cameron's little brain was developing in the first weeks of the pregnancy there was pieces of grey brain matter that didn't migrate to where it was supposed to go. It stayed in the center of his brain connected to the ventricle.The noduals of brain matter highjack electrical information. They can highjack anything and everything. His is highjacking the information his brain is sending to his speech center. The bad news...well, they have no cure. There is absolutely nothing they can do for it. No medicine, no surgery. He told us to do intense speech therapy, as often as we can handle and teach him sign language. There is no way of knowing if he will have 10 words, 100, 1000 or be able to eventually speak normally. He may need to use sign his whole life and he may need to use it just for a few years until we can build up his vocabulary. The good news...70% of the time kids with PVNH are mildly to severely mentally disabled...Cam is not!!! 82% of the time kids with PVNH have a seizure disorder that is not very treatable...Cam does not have one, (at this point). The nodules not only highjack information but they also send out misfires of electrical waves causing seizures. Cameron could eventually develop them in the future. The neurologist said to contact him if that happens. We will only see him a couple times a year until then, because he can't treat anything but the seizure disorder.
The future. We have no way of knowing what else his PVNH will block. We won't know until we get to new levels of development. It could cause problems with reading, math, comprehension, or any number of other things. We will have to find out as we go what we are dealing with. Right now it's just his speech. Cam can sort shapes and colors. He loves to look at books. He comprehends everything we say and follows directions better than most little ones. He is learning sign language very well. It is darling to see him sign. He has about 8 words that he uses on his own now. He tries everyday to communicate with everyone around him. He is in speech therapy once a week and has a toddler class once a week as well. I am starting a new program that helps train parents to communicate more effectively with their delayed children. I will do everything in my power to Break his Silence! This is Cameron's story.

2 comments:

  1. Julie, you are an amazing person and an awesome mother. Cameron is adorable. He is lucky to have a wonderful family to help him through this.

    ReplyDelete
  2. Julie, my heart goes out to you, Curtis, Cam and the rest of your family. Please let Merrill and I know how we can best support you. All our love and prayers,

    Merrill & Holly White

    ReplyDelete

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