Well today was the much anticipated visit with Dr. Berger (head of Neurology at UK) to discuss my brain issues. I can honestly say it was a VERY good visit. I had been pretty anxious going into this because I am trying to decide whether to go to Cleveland or not. I have an appointment in a week or so but that is a LONG way to go plus the expense with it being out of network… I just don’t know if it is worth it at this point in the game. I still don’t know if anyone honestly KNOWS what is going on. After today my suspicions are confirmed. Dr. Berger is “intrigued” by my symptoms not only metaphysical but my anatomy. He pointed out several things that I have never thought added up to much before now.
- my jaws do not connect correctly and they pop every time I fully open my mouth
- my teeth / bite is off (not like overbite or underbite) where my teeth start and end…. mine done match
- my palette is mis-formed (we knew that from the days of braces and the palette expander)
- my ears are not normal… and likely the anatomy in the inner ear is not either which is why I have so much goo that comes out of them (yes… TMI but hey… its what I do… I thought I was leaking CSF for a while!) They are also not set correctly on my skull
- my toes. HAH! It has always been a big joke in my family that I had a “hammer toe” but in actuality Dr. Berger said he had never seen anything like my toes… it certainly is NOT hammer toe but it IS something.
- my butt … well really my sacral dimple. Yes I have one of those like Ky… didn’t realize it until just lately!
That combined with Chiari (which is a CONGENITAL anomaly… meaning I was born with it) add up to something. This is likely some underlying syndrome that has gone un-diagnosed for many years. Dr. Berger thinks it could possibly be some autosomally recessive thing but who knows. After his thorough exam he said we definitely need more testing and evaluation. He looked at my MRI and came back almost laughing. He said it was “VERY interesting”. He seemed anxious to keep the DVD to show to his colleagues… knowing what I know about Kyleigh’s experience…. this is actually a GOOD thing.
So, they sent me straight for another EEG today. I will be off to the specialists, one is a Neurologist who specializes in Epilepsy and another who is a Neurosurgeon. Now, here’s the kicker… the Neurosurgeon that Dr. Berger wants me to see because he thinks he is best suited for taking care of my particular issues… is Dr. Robert Owen!! (anyone remember him? Think back to 3/18/08…) He happens to be the same neurosurgeon who did Kyleigh’s Tethered Cord surgery. How funny is that? I know that NOTHING is ever a coincidence in my life. I remember when I came back from Chicago and Joe recommended Bob we immediately felt comfortable with him. Hopefully, knowing Kyleigh’s history, it will give him insight into my case.
Here is where the story gets even more interesting. The Neurologist who specializes in Epilepsy Dr. Meriem Bensalem. What I found out during my EEG is that she is really Dr. Meriem Bensalem-Owen… Bob’s wife. Small world eh?
So we are on our way. Tonight I am sporting my best “post EEG goopy” hairdo. I will be waiting on the results of that as well as proceeding with appointments for the two specialists. I don’t know if we really know anymore than we did before we went into today but at least we have people “interested” and that is a good thing!
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Well I hope they can figure out what is going on! I guess it is hard when the docs are still confused…but it sounds like you are in good hands! I will pray for the decision you have to make about Cleveland.
It always helps to have doctors on your side and the fact that you know him and he knows you has to be a good thing! Good luck and it sounds like you’re in good hands.
Don not worry you will not receive any emails after this.
Since you don’t answer your phone or won’t return calls I am writing you this brief letter. I have asked you several times if I could take the kids fishing or take them up to the dinosaur exhibit and you said no. I will ask no more. One day when they are older I will tell them you would not allow me to spend time with them.
Thanksgiving I ask you all over and you would not respond to the call or allow us to see the kids. Then Amber got sick and you call us for help. Although we were not good enough to talk to we still came over to help. Do you think we came over in the middle of the night to see the kids. Strange you trusted me with the kids when your wife sick but not before or after. You would have thought that us coming over to help would have improved the relationship. Then at John‘s you would not talk to me but allowed me to spend hour alone with the kids downstairs again seems strange that you would allow someone you don’t trust to be alone with your kids. At Christmas you did not even bother to come over . Two weeks later you brought the kids over for us to watch while you went and did something and pretended it was Christmas. Again strange you would leave your kids with someone you don’t trust. The next time I hear from you I given the ultimatum that if I want to see the kids I can watch them at McDonalds as a first step to prove ourselves. That was about the dumbest thing I ever heard in my life. I raised you and kept the kids for five years in which time they never were hurt or abused.. I spent 8 years doing virtually any thing you all wanted. We ran paper routes, cleaned screens, painted windows, and kept the kids with no notice all. Your answer to all this is you tell me that you do not trust me with the kids. I think you are two of the most ungrateful people that I have ever known.
Have you ever known me to hurt a kid or break the law? Have I ever not
brought the kids back when you told me to? You talk about trust but you tend to confuse it with power. Trust is gained by doing what you say and power is having people do what you say. I am not allowed to see the kids because Amber got her feelings hurt it has nothing to do with trust.. As far as I am concerned you are using the kids a weapons to punish us and try to get your way. You could have suggested counseling or setting down and talking but instead you brought the kids into the equation to use as leverage. You say I should apologize but the trouble with that is I given the circumstances I would do the same thing. I am not going to lie to see the kids. You are not a child and there are some decisions that an adult must make on his own. If I could tell you who to love I would tell you to love your mom and dad but I can’t and you don’t.
You will not let us see the kids which is your right but don’t expect us not to be bitter about it. You stick the knife in by telling us we cannot see the kids and then you twist it by sending us a picture reminding us what were missing.. That was about the most insensitive thing you could have done. I suppose next will get a recording of each kid telling us that we will never see us again.
One thing I have not figured out is why holidays are different than any other day.
If were not good enough to see them on a regular day were not good enough to see them on holidays.
I have talked to John and Missy and they have agreed to take care Sabrina when we die. I would not want her put in a home if she dared did something you disapproved of.
The above I wrote after mothers day but at the time not to send it. Now I will send it with a response to your email.
1. Troy when you came home that night YOU agreed that you would not see the other woman again till you settle with Amber. If you had not lied about that you would have come to the right decision on your own. As far as being a parent if you did not no cheating was wrong I will accept the blame however if you knew it was wrong then it was your fault.
Amber and you made a multitude of bad decisions that put you in a position to fail. Everybody make mistakes and sins you ask for forgiveness from god and move on.
You all put a severe stain on your marriage step up and take responsibility and don’t try to blame it on me. Grow up and take responsibility for your marriage.
2. I wont argue with the ten years . In ten years the only time you all called was if you wanted something . You yourself said you only used us. As far as Amber coming to me the only thing she ever asked for was money for Christmas present. Amber did not come for guidance she came asking your mother to tell you what to do. You don’t stay married because your mother says so you stay married because you believe it’s the right thing. A parent would like to keep their children from harm but its not possible. Only the two people involved in a marriage can keep it alive. As far as being hurt I going to give you a warning that my parents gave me nobody will hurt you as bad children do..
You told me I cant see my grandkids and I am a lousy parent. I have been angry and I am
still mad. When I am mad I say sometimes say things I don‘t I apologize for swearing
and name calling. Sue and my mother had differences of opinion and she told me that
She did not trust her to watch the you and Sabrina. I told her that we did not have to agree with my mother on everything but she was good enough to raise me she was good enough to keep my kids. I guess I hoped my son would have done the same.
Here some more advice. I assume you believe in god so I suggest you pray to have the hate removed from your hearts. You are so eat up with hatred that you can not even pick up the kids clothes. I assume that you think that the clothes have been contaminated with evil. What kind of twisted reasoning could there be for not wanting the kids clothes.
Your mother went in the hospital and you did even care enough to see if she was alive or dead. You would think that you could have put are differences aside for few minutes. I tried to see if she could see the kids for a few minutes before she went to have surgery but naturally you would not return my call and probably did not care.
I am not perfect I made my share of mistakes but I did the best I knew how. The person you have known for thirty years is the person I am. If you can not trust me after all those years I have not got enough years left to gain it.
I given all I have I have no more to give. You know for a few years I used to stay at home fathers day waiting for a call or visit. I gave up hope of that some years back.
I have missed so much being sick. I am finally better enough that I am trying to catch up on blogs one by one. I know this was several days ago, but I wanted to let you know I am praying for you. God bless.