I have gotten so many questions, I do not have time to get back with everyone. Just so everyone understands, I want to provide this information and a update.
Wesley has Chiari Malformation. A rare brain disease. This is something we will have to watch with the kids and that scares me everyday. You can read more about it here, if you would like:
This has been going on for 18 months and if he would had went to a Chiari Dr. to begin with he probably would not had 4 surgeries and countless other tests. But we can not look back on that now.
Somedays Wesley can function. Other days he can not. (most days). He told me this morning he can not take this anymore.It breaks my heart and this is ripping me apart. I am getting to where I just can not handle anything anymore. I feel like I am failing at being a mother, because I am so overwhelmed with Wesley. We have decided we have got to try and get him into a specialist. He is never going to be able to live a normal life unless we get him the right help. His Dr.'s now are trying to chalk everything off as migraines now. They have him on medicine that is not doing nothing and they have even moved up the dose. There are two different Chiari Institute's. The one in NY I think is going to be the best for what Wesley has. Because he has the Pseudo Tumor(to much fluid on the brain) (also caused by Chiari). I am doing research and looking into both. I am also looking into our insurance to see what they will pay.
Of course CO is closer, but I am looking at both.
I never thought we would ever be in a situation like this. We know everyone is praying around the clock for Wesley, we really appreciate it. Right now he is on 6 medicines a day. Yes he is working. He has too. He makes himself. I honestly do not know how he makes it somedays. Somedays he ends up back at home.At home he can take pain pills and they help some. But, at work he can not take them. We are very worried about his job and how much longer they will put up with the situation. He loves his job. We need big things to happen. Please pray that we can get him into an institute. If we can get him in we will need great financial help. Please be praying about that as well. We are barely surviving. I will update as anything changes.
If anyone has any information or know anything on these Dr.'s ,please let me know. Pass the word and get everyone praying.