Fiss,
That would be great if your daughter goes into that "caring" field!
NG,
Like Fiss says, never underestimate the power of the human spirit. One of my son's docs couldn't believe the progress my son had made many years after an original diagnosis that was so very gloomy. It's amazing how incorrect docs can be in predicting future outcomes. Just look at how many docs were wrong in diagnosing people on this board!! :roll:

Cheryl, nope there's no blood test to confirm the diagnosis, unfortunately. It's just a wait and see thing. But his main problems so far are with muscle tone and coordination so it's likely the athetoid type of CP. We see the neurologist again in a few months after my son's had his GI surgeries but the doc's about 99% certain of the diagnosis based on what he saw today.
You're right Fissy, seeing these kids really does put things into perspective. I complain a lot because I've got a lot of problems that are new to me, but really, I've already lived about 60 years worth of life in my 30 years before my weird health problems started. If it all ended for me today, I'd still have lived a much fuller life than many people ever get to. For my son I just hope he can enjoy even a fraction of what I've been able to experience in my lifetime. I've traveled all over the world and have seen and experience all kinds of things while he may never be able to sit or speak or even pick up a spoon.

I continue to believe that docs cannot always predict how a baby will progress during his or her lifetime!! Plus new medical developments continue to occur. Just this week there was a paper published about researchers recently discovering an entirely new set of genes that can contribute to autism. I'll post the link if anyone is interested!

Yes NG - but you misunderstood He is never going to have a life like you, his experience is going to be different but not less worthy than yours. He will enjoy things in his own way and at his own accord and seeing the butterflies fly in the meadow might give him more "high" than any of your overseas trips !!!!! That is what I was trying to convey

Yup I know what you mean Fissy. I get my thrills (or at least got them before life got weird!) from traveling, snowboarding, motorcycles, sports cars, etc. Because I was able to enjoy such things, I consider myself having lived a privileged life. But I'm sure to someone like Bill Gates they are very mundane activities since he's had access to so much more. What tickles one's fancy varies from person to person and is all relative to what else they've experienced.
You know, my main hope for my son is that his intellect is not severely damaged. If he never gets to visit Europe, ride down the mountain on a snowboard, or ride a bike, fine. Lots of people never do. I just hope he's able to understand the world around him and communicate with us.

Oh yeah please do post the link on autism Cheryl. I think we chatted about this a while ago but I was a chemist for a little bit after college (biochem/microbio in undergrad) and am still keenly interested in things like genetics even after years of soul-less computer work :)

NeuropathicGuy wrote: For my son I just hope he can enjoy even a fraction of what I've been able to experience in my lifetime. I've traveled all over the world and have seen and experience all kinds of things while he may never be able to sit or speak or even pick up a spoon.

Believe me when I say....I know first hand how difficult it is for you and your family to go through this. My sister, who is 44 and absolutely the most amazing person I have and will ever know is mentally challenged and has cerebral palsy. I would not trade her for anything. She can not hear, walk or talk, but she is very, very aware and knows alot more then what the doctors ever told my mom she would know. Actually, they told my mom to put my sister in a home and forget about her. My mom raised 4 of us by herself and we never treated my sister as though she was any different then the rest of us. She knows the family, the nieces and nephews, all of our pets. She loves parties and all the same things we enjoy. Honestly she has more of a social life then anyone I know. She is a very happy person...even with her disabilities. And, like I said...I know it will be difficult at times...but there will be things that your son will do that will be sooooooooooo amazing that you will forget about the difficult times.
Hugs to you and your son

Thanks Fire for posting your beautiful story !!!! I had a feeling that you must have been coming form a very loving and extraordinary family since you also have so much insight in life and life issues in general and are very giving and spiritual person

You know, my main hope for my son is that his intellect is not severely damaged. If he never gets to visit Europe, ride down the mountain on a snowboard, or ride a bike, fine. Lots of people never do. I just hope he's able to understand the world around him and communicate with us.

NG - that is part that you can actually work on and help him reach his full potential and even exceed it !!! As I already told you, my MIL's neighbor gave a birth to a baby-girl with Down Syndrome. She was advised that child will never be able to go to a regular school and would have trouble learning basic skills of everyday life and have trouble with coordination and such. She is now 7 years old and goes in REGULAR school and having Cs and Bs and some A's !!!! She is the most talkative and happy-go-lucky child and the whole city actually gave her a recognition for achieving so much, so young and with a disability !!!!
BUT- you know - her parents were working with her since DAY ONE !!!! Every physical therapy or mental exercise that existed was implemented and as well as nutritional aspects and she was pushed to be out and about EVERY DAY !!!! She was stimulated non-stop by family , neighbors, kids , her Sister - never isolated from every-day experiences !!!! : )))) She traveled with family anywhere they went - Italy, seaside, skiing trips !!!! I know that CP is much more severe condition than Down's , but I am sure that much can be done with proper therapies : ))) !!! Brain has such a wast possibilities and nobody can predict how far ahead he can go in that !!!
What is the most important fact, as Fire already stated, is that regardless of the level of intellect, he will be able to feel love, happiness and enjoy life .

[quote="Fissulyna"]Thanks Fire for posting your beautiful story !!!! I had a feeling that you must have been coming form a very loving and extraordinary family since you also have so much insight in life and life issues in general and are very giving and spiritual person

You know, my main hope for my son is that his intellect is not severely damaged. If he never gets to visit Europe, ride down the mountain on a snowboard, or ride a bike, fine. Lots of people never do. I just hope he's able to understand the world around him and communicate with us.

You are soooooooo welcome for my story!!!!
And Neuro....Your son will visit Europe...you will take him, he may not ride down a mountain on a snowboard...but you will set him on your lap and sit on a sled and go down a small snowy covered hill...as for bike riding that may suprise you....my sister, even though she has trouble using her arms now...it was much easier for her when she was a child...she had one of those things that was similar to a big wheel but she had to use her arms...and believe me she never wanted to get off of it. My sister also loved going on roller coasters at the amusement parks when we were kids. No...she did not get on the huge roller coasters...she got on the ones for kids....and she LOVED it. Your son will always amaze you with the things he can do!!!!

FireCracker, thanks so much for sharing your sister's story. She sounds like an incredible person and it's very encouraging to hear that she's lived such a full life! One of the things I was worried about was life expectancy. I saw literature suggesting that many cerebral palsy patients don't live past their teens. If your sister is 44 and going strong then that gives me a lot of hope. I'm only beginning to learn about cerebral palsy. Yesterday was the first day I've heard the words uttered in relation to my son's condition (before that it was simply "diffuse brain damage"). I did some reading and didn't realize there were various subsets of cerebral palsy. If you don't mind my asking, do you know which subset your sister's condition falls into? It looks like there is some overlap between subsets but most people are classified into a primary group based on symptoms and areas of the brain affected. My son's looks like athetoid, which supposedly doesn't impact cognition that much (I hope this is true) but does severely impact motor skills, especially the ability to sit or stand upright or pick things up. While the whole thing is obviously upsetting, I almost feel a slight sense of relief to have a name to go with it now. It feels like now I have a sense of what to deal with instead of some undefined beast.