Today was an emotional roller coaster. It was just an amazing experience to be here, that in itself was emotional. It seemed as if we all grew to be a "special family" experiencing the same things in life. Classes were given this day, and at different times, and you got to choose what you wanted to attend, because Saturday there were the same classes also, so if you didn't get to attend the ones you wanted, you could go on Saturday. Our first class we went to was about speech pathology. It was good, but had to leave during it because we had our Dr.
Appt. They were having clinics on the 4
th floor of the Hotel, where doctors would meet with you. I had sent in doctors notes and more importantly the MRI I had taken of
Damons Brain about a month prior. That would be an answer to something we never saw coming. We always knew Damon had a smaller head, known as
Microcephaly, also we knew he had Cerebral Palsy. What we thought was Damon's main diagnosis
microcephaly, was really not that at all. He has what is know as bilateral
perisylvian Polymicrogyria (
PMG) meaning he has an
abnormally and excessively
infolded cerebral cortex. "
Perisylvian " implies a specific area called the
Sylvian fissure. This area
od the brain is involved in the control of the muscles of the face, tongue, and mouth. This explains
alot about
Damons mouth where he is always drooling, and cannot eat too many solid foods, because he chokes on them. The other thing what was pointed out to us, is its not a matter or
IF, its a matter of
WHEN he will have seizures. Such a sad thing to see your kids go through. But just as all that we have been through with him, it is just something we will learn to live with, and to be honest, I just call it another trophy on his wall making Damon the special little boy that he is. It is just a little frustrating knowing that no doctor has ever gone over a MRI with us explaining anything, and were never diagnosed with this. But looking back, now I understand. It was such a blessing to be diagnosed when and where we were, because their were so many kids there with the same diagnoses as Damon, and lots of info was presented at the convention presented. This is a rare disorder, and not as common as the
microcephaly or Cerebral Palsy. So it was so important for us to be there at the convention when we were. We are advised to have
genetic testing done, checking for chromosomal abnormality associated with
PMG.
"We are Not Alone" Conference held in Costa Mesa California at the Hilton Convention center
This is a little girl with
PMG, and her dad who
wrote a book about his daughter. He also gave a talk here which was really good, and they were giving away copies.
After the day way over, we ventured to Newport Beach which was about a 15 minute drive from the hotel. It was way too cold to be out, so we were there to snap some shots, and then go back for a dinner buffet at a local
restaurant near the Hotel, called
Scotts.
These were just some beach front houses that I thought looked cool
A BEAUTIFUL View
Some of the kids singing head shoulders knees and toes
We went to dinner with two other couples at the Newport Pier out on the ocean! This random guy was dressed up like Jack Sparrow, and we had to get a picture with him!
Here is our group that we went to dinner with. Good times!
Downstairs of the Hilton Hotel, where the Convention was, they had a 
They had a guy come and sing to the kids, and let them dance Damon and Keenan absolutely loved it! 
The "meet and greet" dinner. The convention this year doubled in size!
Flying above the clouds!
Where all the magic happens, before entering fantasy land!
