California Day 3

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 4th 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