To catch you up....

In January 2008 my husband and I sat in front of a doctor that gave us news, changing our lives forever. We were told that our son (12 years old at the time) had a brain injury and had regressed to apprx age 6/8.  We were told it was the left side of his brain and that chances were, he was and would stay "stuck in time".  There was no answer as to why or how this happened.  Being that it is 2011 and I am just starting this blog, I won't be giving you all of the details as to what we went through but after the numerous changes since that day; I am choosing now to document our lives.  We call it "Leckieville".

Our hopes are to encourage, inspire, and educate.  Before I get too far ahead of myself, here is a journal entry from November 8th, 2009....
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I decided to post an update since so many of you have been such a huge part of helping us get to where we are today. After our recent diagnosis, we spent the summer at Duke University receiving a second opinion.  With our permission our information was shared with Yale University.  One day we got a call that they wanted us to come and visit.  And it went like this....

Channer loved the plane ride up to Hartford, CT. I cannot say the same for the trip back to SC, LOL. Apparently, when your child doesn't like change very much, you better know what you are doing when you introduce something new (like a plane ride!). On our way up, we sat on the right side, next to a window and we could see the wing right from our window. The plane was very nice, it even had headrest tv sets in every seat throughout the plane. On our way home, we sat in the front of the plane on the left side. He couldn't see the wing and the front of the plane is much louder. Plus it got dark by the time we got to our connecting flight. This time, no headrest tv's. Needless to say, Channer didn't understand why things were different and insisted that we change seats. The plane was packed and that wasn't an option. We toughed it out and so did everyone else around us.

The people at Yale were so generous and kind. They treated us like royalty. Basically after hours and hours of testing we were told that several things would happen.

1. Our blood work would be examined and they should be done reviewing it in a couple of months. They will stay in close contact with us.

2. Channer was the first to receive this new type of MRI. They said for us to be patient since they have a team of people that will gather to do the readings. The pictures are to be much more precise than any other MRI before. The machine was delivered a month ago at Yale. They were excited to use it as we were to be in it.

3. Channer will officially be labeled PDD - NOS (not otherwise specified). "The essential features of PDD-NOS are severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills; and stereotyped behaviors, interests, and activities". It is on the spectrum of Austism.

4. Channer still remains with the diagnosis of "Organic Brain Syndrome". This is a general term that means he has some sort of injury to his brain and they don't know how or why. Thiey are closing in on the fact that this injury has affected Channer's memory.

5. We talked about strategies and therapies that we are doing or could be doing. They all agreed that we are on the right track.

Overall, I am very happy about the trip. The evaulation doesn't stop here. They still have lots of studies to do with all of the test they took and will continue to look for others like Channer. Of course, once again.....I heard the words "Wow, we have never seen this before". Yale will be apart of us forever. Channer has been assigned a number for research purposes and we have given permission to keep on looking.

I posted on facebook a comment that said "Having a child with disabilities is like a diet, there is no rule book or special pill that gets you where you want to be. It's a lifestyle change. Then your eyes are open to a whole new world.

For many months, I have been knee deep in "investigating". I needed to go through that to get where I am today. I love Channer so much, I want him to have all of the same opportunities that we all have. Now I know that he will. The sky is the limit for him, no matter what doctors want to call it. No diagnosis, no label, no one person will keep him from reaching the stars.

Now, time to write my book. Seriously.

Signed,
"Only in Leckiville" :)