Stevie & Jacob's Page
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Stevie & Jacob's Page

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i. Uncle Don here. Being a proud uncle, I'd like to share a little bit about my two nephews, Stevie and Jacob, a couple of pretty neat kids.

Stevie likes:
pooh image His new iMac
Stevie got hooked on Nanosaur before his Mom and Dad's new iMac even arrived. He learned how to play the game on an iMac on display at our local ComputerWare.
pooh image Superman
Stevie is a big fan of Superman. Just like his Uncle Don (and as you'll see, his Aunt Lisa).
pooh image Movies
He's also quite a movie buff. I think he gets it from his "Uncle Joe" (actually first-cousin, once removed), who used to work at Walt Disney Imagineering.
pooh image Jacob
Like any 5-year-old, Stevie was really excited about having a baby brother. When Jacob actually came along, he was a little less excited. But Jacob is a pretty special guy, and he won Stevie over pretty quickly. Now that he's ten, Stevie is a very attentive older brother.
Stevie picture
Jacob picture Jacob likes:
pooh image Stevie
Jacob is pretty nuts about his big brother. He's also really partial to his Mommy and Grandma. Daddy and Grandpa are cool, and as he's gotten older (he's now over 2! Where does the time go?!), he's decided his Uncle Don, Aunt Lisa, Uncle Dave, and Aunt Jean are all okay, too.
pooh image Sarah
Jacob really likes his cousin Sarah. The feeling is mutual!
pooh image Pooh Bear
Actually, Mommy's the one who likes Winnie the Pooh, but Jacob doesn't seem to mind all the Pooh Bear decorations and clothes!aliens image
pooh image Stevie's Toy Story Alien
Jake loves to push on the alien's tummy and make it go "Ooooh." Then he makes the sound, too!
pooh image His Bouncing Tigger
A miracle of computer design, when you press down on Tigger, he jumps up and down. Without falling over! Jake loves him.

Some pictures of the boys

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Learning to Live with Down Syndrome

Finding out your baby has DS.

n the fall of 1996, my brother Steve (29) and sister-in-law Deanna (26) had no idea that their second child would have Down Syndrome until he was born. Deanna had taken the standard blood test that can sometimes identify DS, but in her case, as in many others, the test gave a false-negative.

Deanna's pregnancy went pretty normally until about the last week before Jacob was born. She then began to notice that the baby wasn't as active as he had been up to that point. She noticed that she was leaking some fluid. She spoke to her doctor about it, but she was told it wasn't serious and was sent home. When she finally went into labor several days later, Jacob was in a fair amount of distress: Deanna's water had broken days before, and Jacob had become badly dehydrated.

Jacob came into the world with a severe lung infection and a heart murmer. His right arm didn't seem to be moving, but the doctors told us that it might just be a result of how he had arranged himself in the womb. It would take time to know for certain. He was air-ambulanced from Central Oregon to Portland and placed in neo-natal intensive care. For the first couple of days we were really worried that we might lose him. At about the same time, because some of the problems he was having are common to kids with Down Syndrome, the doctors told us that might be a possibility. He didn't *look* like he had Down Syndrome (except for some thickness at the back of the neck), but we all had "a feeling" (I suspect it was a combination of the available evidence, no previous family history of difficult deliveries, and preparing for "the worst").

he most immediate problem was the hole the doctors detected in Jacob's heart. Given the additional stress of the lung infection, we were very concerned that he might not make it, or that he might need surgery. Fortunately, he was eating well and regained strength quickly. The heart problem cleared up by itself.

By this time, the result of the chromosome test came back positive. I think by then, everyone was pretty well prepared for that outcome, but it was a pretty big thing to try to understand nevertheless. My wife (then finacee) Lisa and I gathered a lot of information from the web (see some of my Down Syndrome related links below). Being able to find out about other's experiences helped a lot.

Jacob was put into an early intervention program at 3 weeks of age. It's been a tremendous help. The therapists worked with him, helping to strengthen his weak right arm (it's perfectly fine, now). As he's grown older, they've worked with him on motor control, sitting up, walking. Around Christmas 1998 (at age 26 months), he started to get the hang of walking. There's no stopping him now!

To be continued...

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Down Syndrome Resources

pooh image Down Syndrome League of the Greater Bay Area (new item image URL)
The Down Syndrome support organization for the San Francisco Bay Area.

pooh image People with DS on the World Wide Web
Check out the web pages of people with DS on the Web, including the star of "Life Goes On," Chris Burke.

pooh image National Down Syndrome Society
The NDSS seeks to increase public awareness of issues related to Down Syndrome. NDSS also supports research into the causes of, and answers to, the problems associated with Down Syndrome.

pooh image National Down Syndrome Congress
The NDSC serves as an advocate for people with Down Syndrome, acting as a national voice for state and local organizations.

pooh image Down Syndrome WWW Page
Check out this page, compiled by the members of the Down Syndrome Listserv.

pooh image Special Olympics
Check out the home page for Special Olympics International. From there, you can jump to pages for local Special Olympics organizations. Don't forget to check out the Special Olympics store!

For Information on Special Olympics in Northern California, check out the Special Olympics Northern California page.

pooh image What's Up with Downs?
Michele Kehler has put together a terrific resource for families.

pooh image Down Syndrome Sites on the Internet
Dr. Len Leshin's comprehensive list of Down Syndrome links.

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