Okay, here it goes. I am working on a new project Folks to help raise awareness and funds for the "Children's Tumor Foundation". I don't quite have all the particulars in order as of yet, but will shortly and I will be posting the project soon. I am going to be asking for your help and to work with me for the NF Cause. Be prepared.

Duane is doing so much better with the increase of his seizure medications as well as his mood stablizers. His last seiaure was about a month ago. We are so thankful for this. It is great to see him smiling and doing more things then just sleeping so much.

Thank you for your thoughts and prayers.
Marette

I will be hosting a "Virtual Tea Party" on May 6th, 2012 to help raise awarness and funds to "End The NF Puzzle"
Friends and Family, please help us support this cause and spread the word to your friends and their family. This disorder needs to end and with your support, we are making steps in the right direction.
Here is a link to the Children's Tumor Foundation web page and it links directly to my support/donation page. www.ctf.org/icalrepeat.detail/2012/05/06/903/wyoming-tea-for-nf.html
Please click on this page,  next:  click on make a donation line.
If you haven't read through all the pages on the blog, please do so. You will meet some special people and have an insight to what Neurofibromatosis Disorder is. Read our personal story as well.
Thank you so very much.


You may donate anytime you would like to. I will be online May 6th if anyone would like to leave comments.

Please help support our cause Folks.

The test results are in Folks. This is what Duane's neurologist reported. His CT scan for possible growth between his rib cage and heart wall, negative, no signs of any growth, however, he is having pains in his chest. His MRI on the brain, according to the Neurologist, states that Duane does not have any gliomas. Two years ago Duane had a MRI that showed a 7mm glioma. The MRI of his left knee shows again, no growth, why is he having pain and feeling of a half filled water ballon behind his knee. The EEG, normal. Why is he having seizures? The colonoscopy, (performed by surgeon) removing a bleeding polyp, was fine, and as far as the skin tumors that were removed, all biopsied fine, except one. This had a couple of black spots and it was tested as having abnormal cells. Duane will be going back next month for a follow up and to check any other tumors that may have these little black spots.

The neurologist wants Duane back to have more tests done, due to headaches and the lack of energy along with a few other symptoms.

I really want to have a second opinion. My Son is not well, his medication has been more then doubled by the neuologist, and he sleeps all the time, Duane feels very drained, lack of energy and is tired.

 Oh and by the way, the neurologist said to Duane, while he was getting set up for a EEG, I was in the room with Duane at the time. "Duane, tests are in, guess what? You aren't as sick as you may think you are!"

Are you kidding? What kind of a neurologist says that? I about came out of the chair,  he scoodadled into the next awaiting patient room.

Folks, your not alone, it is so frustrating, you can't take any of the pain from your child, spouse, grandchild, sibling, parent or friend. But you can be there for them, be strong, incourage, and love them.

Thank you all for your thoughts and prayers.

Marette

The month of January has been a trying time. Duane has had many appointments since seeing his new  Neurologist.
The amount of paper work that was filled out, first time new patient, to where is the pain, to list of medications. Wow!
He has had MRI's on his brain, to check for gliomas,  a MRI on his left knee due to a growth that Duane feels behind his left knee. He had lab work done, an EEG, checking brain waves, and a CT scan to check for a growth between his heart wall and rib cage. His last test was a colonoscopy and a few skin tumors removed.
I am so proud of Duane, he was a pro with all the tests and didn't complain once, okay he did once, it was the process of the night before the colonoscopy. The clean out process, yuck. And that he was extremely hungry.

If you have any questions about Duane's condition, please feel free to email or leave a comment.
Thank you folks for your prayers and wishes.
Marette