H

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: 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. Superman Stevie is a big fan of Superman. Just like his Uncle Don (and as you'll see, his Aunt Lisa). 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. 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.

Jacob likes: 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. Sarah Jacob really likes his cousin Sarah. The feeling is mutual! 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! 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! 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

| Return to top |

Learning to Live with Down Syndrome

I

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").

T

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...