NG and family,

How are you feeling by the way??? Hope everyday is getting easier for you.

NeuropathicGuy wrote: If you don't mind my asking,

I definately don't mind you asking!!! I love to brag about my big sis all the time!!! Anytime you have a question....ask away!!!
My mother never told me which type of CP my sister has, but from what I just read about the different types it looks to me as though she has "Spastic CP". I remember when we were kids that she had to have surgery on both of her legs. I will have to check with my mom, but I am 99% it was because muscles in my sisters legs were so stiff/contracted. Even as an adult her legs, arms and fingers are very stiff. She does get Physical Therapy and has certain exercises that she has to do daily.
About the life expectancy....I think it's awesome that my sister is 44. I remember learning about the life expectancy for someone with CP when I was young and I worried all the time, and of course I still worry, but that is one thing that I have put in the back of my mind as her and I got older...because things can happen to any of us at anytime.
I have noticed, within the past few years a decline of sorts. For a while it seemed as though she was stiffer than usual and she was constantly moving her tongue around...but it turned out to be a side effect from one of her medications. I think that it may have been a medication that she takes for epilepsy....so that was switched. Also within the past few years...I have noticed that she has a very hard time holding her fork or spoon while eating, but that's ok...whenever it's time to eat Mom or I will help my sister while we eat. She also loves to color, but has a hard time holding crayons...so I normally buy her the big fat markers...they are much easier for her to hold.
I know I did not mention this before, but my sister does not live at home. She lived at home until she was 22. As I mentioned before my Mom raised us on her own...the "donor" left her with 4 children with ages from 4 down to 2 weeks. Thankfully my grandparents (my moms parents) were very involved with helping. As we were getting older Mom started worrying about what would happen to my sister once she is gone. The day program that my sister went to while growing up gave her info. on a home for people with special needs. I was sooooo against it and fought with my Mom over that constantly. I thought that I would grow up and take care of her. But with all of us my sister was getting bigger, Mom was getting older and it was just getting harder and harder to carry my sister upstairs to bed and to care for her period...she can never be left alone. So my sister moved into her home along with 7 other residents with severe disabilities....and she loves it. She has 24 hour care of course....they are always out shopping, getting their hair done, different sporting events....honestly she is always on the go. She only lives 15 minutes from me...actually from the whole family...and we are can go and visit her whenever we want (we call first because like I said the girl is always going somewhere), and we can bring her home as much as we want. We have never excluded my sister from any parties, cookouts or any holidays. Every year we have a big birthday party for her, and believe me she knows when it's her b-day and she expects lots of gifts, lol, which she does get. One of the things that I just love, love, love is that she still believes in Santa and the Easter Bunny. I absolutey love the look in her eyes when it's time to go to sleep for santa to come, and just like any kid she has a hard time sleeping because of the excitement.
OMG....I am so sorry I just wrote a book. Like I said before Neuro...if you have any questions for me...ask away.

Fire,
So wonderful for your sis to have been born into such a loving, caring, and supportive family!!

Thanks FireCracker, I appreciate the "book" I'll let my wife know about your sister, we don't know anyone else who has a child or family member with cerebral palsy so we're trying to suck in as much info about it as possible. I'll write more later, thanks again!

NG,
I think it's doubly hard for males to get such a diagnosis about a son. One of the few times I've seen my husband get emotional since I've known him was when the doc delivered grim news to us about our son's future. I think oftentimes the docs try to paint the gloomiest of pictures in order to prepare the parents emotionally. :roll:
BUT sometimes the future turns out much better than the docs predict as I've stated numerous times! I read books stating half of persons with autism never speak, half end up institutionalized, etc., etc. I knew I had to push that out of my mind and try whatever I could--total communication, etc. You might want to read less after a point because the stats aren't always correct!! BTW our son is staying in a college dorm this weekend participating in Special Olympics!
One last thing--one of my son's housemates has CP, and he smokes (cigarettes), which I consider to be a rather high functioning skill!! And possibly your doc might know of a parent group. Our group helped me a lot during our son's early years.

That is excellent point Cheryl !!!!
Finding a parent group or any other support group in the area and joining would be the best thing one can do.
That way one gets the info about local programs and best doctors and physiotherapists and such! Beside that, one gets to see first-hand what kind of care those kids need and what can be accomplished and also one does not feel isolated !!!!
NG- I found astounding statistic done in GB that CP in some form is present is one child in 400 !!!!!!!!! I was shocked with that high rate !!!! And look at this % www.cdc.gov/ncbddd/dd/cp3.htm
So , there must be very high number of children in our area with that condition and probably a LOT of support groups !
Best of luck finding the perfect one for you guys !!!!

http://agile-uk.org/director/members/newsandanalysis/frontlinemagazine/archiveissues.cfm?ITEM_ID=A6050FD79F601F68D73DF29DBBEB1397&article=
Please read what a child with CP can achieve with proper therapy : ))))

NG,
There is a young gal who has CP that participates in our Saturday aerobic classes. She doesn't always get all of the moves in at the right time, but many abled body ones in our class don't either. I always try to speak to her, and yesterday she wished me a good day!
Also, in our local area the male member of a set of quints has CP and attends college: http://www.pjstar.com/features/x11205908/Peoria-quints-growing-up-giving-back-to-Children-s-Miracle-Network

Thanks guys. Yeah actually since my wife takes my son to PT and OT several times a week (mostly free social programs), she's told me a lot about the other kids she sees there. Apparently children with serious problems are (unfortunately) not very rare at all.
We're not big support group types, at least not the in-person kind. But we have found some online forums recently where lots of parents of children with similar disabilities hang out, so those look promising.
Kid was throwing up all day yesterday and running a high fever, so he's back in the hospital today. I've still got that same ass pain and some discharge so I'm riding the Vicodin train today. Week's definitely getting off to a wee bit of a rocky start.

Oh, NG, sorry to read about all of that. And my son had to be taken to Prompt Care today for an infected finger.