RAISING JOEY

February 2008
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DC pictures!

February 29, 2008 on 12:06 pm | In Photos, Joey, Montage, Vacations | 5 Comments

Sorry it’s taken me so long to upload more pictures from our trip… the past 5 days have been crazy between unpacking, getting caught up on laundry, Joey’s therapy, doctors appointments and Joey teething again (3 canines!).

One of the doctors appointments this week belonged to Joey. I took him for his yearly trip to the eye doctor. He does have an astigmatism (however it’s spelled) and is slightly far sighted but his eye doctor says that we can hold off getting him glasses until he starts school. Anyways, here are our DC pictures! I’ll try to post more of an update this weekend!

Make video montages at www.OneTrueMedia.com

Brownback bill update

February 28, 2008 on 11:48 pm | In Down syndrome, Articles, pre-natal testing | No Comments

Brownback Applauds Committee Passage of Pre-Natally and Post-Natally Diagnosed Conditions Awareness Act

Urges full Senate consideration for bill to help parents of disabled children

Wednesday, February 27, 2008

WASHINGTON - U.S. Senator Sam Brownback today applauded Senate Health, Education, Labor and Pensions Committee passage of the Pre-natally and Post-natally Diagnosed Conditions Awareness Act, legislation which would require that families who receive a diagnosis of Down syndrome or any other condition, pre-natally or up until a year after birth, will be given pertinent information about the condition and connection with support services and networks that could offer assistance.

“It is difficult, sometimes overwhelming, for expecting parents to receive news that their unborn child may be born with a disability,” said Brownback. “This legislation will help parents receiving such news by supplying them with current and reliable information about the many options available for caring for children with disabilities.”

The Pre-natally and Post-natally Diagnosed Conditions Awareness Act, sponsored by Senators Brownback and Edward Kennedy (D-MA), today by unanimous consent was passed by the Senate HELP Committee. The bill now moves to full Senate consideration.

Brownback continued, “I am hopeful this bill soon moves to consideration by the full Senate. The quicker my colleagues and I move to pass this bill, the more quickly we can help families across the nation.”

The Pre-natally and Post-natally Diagnosed Conditions Awareness Act would provide for the expansion and further development of a national clearinghouse on information for parents of children with disabilities to assist parents whose children have recently been pre- or post-natally diagnosed. The bill also provides for the expansion and further development of national and local peer-support programs. The bill also calls for the creation of a national registry of families willing to adopt children with pre- or post-natally diagnosed conditions.

Currently, 90 percent of children pre-natally diagnosed with Down syndrome are aborted. That percentage is similar for children pre-natally diagnosed with other conditions such as spina bifida, cystic fibrosis, and dwarfism.

We’re home!

February 25, 2008 on 11:05 pm | In Photos, Family, Joey, Montage, Videos, Leah, Vacations | 5 Comments

We had such a wonderful time, I didn’t want to come back! We saw a lot of sights around DC including the Smithsonian Natural History Museum, The Holocaust Museum, The National Aqaurium and from a distance The White House and all the monuments. Since it was a bit chilly outside we didn’t walk around too much since we had the kids with us.

My friend, Alicia and I went to The Holocaust Museum. Words cannot describe how I felt after being there. Having a child with Down syndrome and seeing first hand pictures and exhibits of what the Nazis did to people with disablities really hit home. I was sitting in from of an exhibit on people with disabilities during the Holocaust and was speechless. A lady came up next to me while I was sitting on a bench feeding Leah and I got choked up. She saw Joey sitting in his stroller and looked at me. The only thing I could say was, “he would have been killed by them.” She too got choked up and said, “I know, I have a sister with Down syndrome.” We both sat there for a minute before she got up and left.

Onto a better note… we stayed at Patrick’s brother’s & his wife’s apartment. Joey had a blast playing with their kittens!

Make an on-line slideshow at www.OneTrueMedia.com

We also got to spend some time with my best friend, Alicia, her husband and son. Their son was born 1 1/2 month before Leah so the two are the perfect match. It was love at first sight!

Make video montages at www.OneTrueMedia.com

More pictures to come tomorrow!!!

And we’re off!

February 19, 2008 on 11:38 am | In Vacations | 4 Comments

Be back in a week! We’re off for our first family vacation (besides Ohio) to Washington DC! I’ll be sure to take lots of pictures of the kiddos while we’re gone!

Happy Birthday Patrick!

February 18, 2008 on 2:01 pm | In Birthday Wishes | 4 Comments

Happy 30th birthday to my wonderful husband, Patrick! You’re the best husband and father anyone could ask for!

Wedding bells!

February 17, 2008 on 3:03 pm | In Down syndrome, Articles | No Comments

A Valentine’s Day wedding to remember

(be sure to also watch the video!)

By Joe Fryer, KARE 11 news

Excelsior, MN — Valentine’s Day isn’t for everyone, but even Cupid’s toughest critic would struggle to turn away from this love story.

Jim Lundquist and Sarah Stanchfield got engaged last Valentine’s Day, so it was only appropriate they got married on this Valentine’s Day.

“I’ll probably cry,” Sarah’s dad says before the wedding. “I’ve got Kleenex here.”

Sarah and Jim both have Down Syndrome. It took a lot of planning and paperwork to make the wedding possible. It also took a great deal of support from friends and family.

But finally after all that work, the big day was here. And when Jim saw his bride in her dress for the first time, the expression on his face was filled with more joy than anyone could imagine.

Continue reading Wedding bells!…

Happy Valentine’s Day!

February 14, 2008 on 10:44 am | In Uncategorized | No Comments

C is for cookie

February 13, 2008 on 4:08 pm | In Joey, Milestones- Joey, Eating Solids, Self Feeding | 8 Comments

Last night my knees were killing me. Why you may ask? Because Joey and I were playing peak-a-boo/ hide & seek. I would hide around a corner and Joey would come find me and I would jump out and scare him. Then he would turn around and go “hide” again for me to jump back out at. This went on for over 20 minutes.

Huge Joey milestone the other night… he ate graham cracker sticks for the first time! For those of you who read my blog often, you know that Joey will never put anything solid or hard in his mouth. He started putting biter biscuits in his mouth 2 weeks ago but they had to be dipped in cheez-whiz, so this really is big. It took 20 minutes of Patrick and I singing to him while I would touch the cookie to his mouth. Finally he tasted it and then started licking it. After a while a piece came off in his mouth but he spit it out so I shoved it back in his mouth with my fingers and wouldn’t you know, he ate it! This is a huge milestone if you think about the fact that he’s never really eaten a cookie or anything else before. Yeah, he puts a biter biscuit in his mouth but wouldn’t bite it just like it. Now he’s eating graham crackers! I never thought I would be so happy to see my child eat a cookie until now!

Speaking of Joey eating new foods, he’s also now eating canned corn, tuna fish, and ground beef! We’re finally making progress!!

Life With Anthony

February 13, 2008 on 3:04 pm | In Down syndrome, Articles | 1 Comment

CNN.com just released an article I thought worthy of sharing…

Life With Anthony

For parents with three small kids — Michael is 4, Jack’s 3, and Anthony is 2 — Lisa and Mike Spellman are surprisingly calm people. From the jumble of bright plastic toys, to the family pictures on every table, to the five baby gates in the downstairs alone, it’s obvious that they’ve happily surrendered to parenthood. Lisa (a former attorney, now an at-home mom) and Mike (a neuroradiologist) take it all in stride, even when the volume in their Nashville house approaches deafening.

In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, laughing whenever they do. He’s too young to get the joke, but he’s fully part of the gang.

So when Mike was at his high school reunion on Long Island a while back and going on a bit about the radical changes in his life since he became a dad, he was startled to hear an old friend say sympathetically, “I could never understand what you’re going through.” Mike just looked at him. “It took me a while to realize what he was talking about,” he says.

Devastating news

The friend was talking about Down syndrome, a diagnosis the Spellmans received in the delivery room when Anthony was born. The most common form — named for the British physician who first described its physical traits in 1866 — is trisomy 21; it’s a genetic anomaly in which a person has three copies of the 21st chromosome, instead of the standard two. The extra genetic material is believed to cause hearing loss, impaired vision, respiratory difficulty, and cardiac defects, among other health problems — as well as mild to moderate cognitive disability. For Mike’s friend, the idea of raising a child with so many problems must have seemed overwhelming.

One in every 733 babies (about 5,500 a year) in the U.S. is born with Down syndrome, according to the National Down Syndrome Society, most to parents, like the Spellmans, who had no special risk factors. Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren’t routinely tested in the first trimester. But now two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks’ gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but AND? this new test may raise that percentage.

Continue reading Life With Anthony…

Wordless Wednesday

February 13, 2008 on 11:49 am | In Joey, Videos, Leah, Wordless Wednesday | 5 Comments

Well… the video isn’t wordless, but the pictures afterwards are!

Make photo slide shows at www.OneTrueMedia.com

For more Wordless Wednesdays, go here.

My new hot mama do!

February 12, 2008 on 6:07 pm | In Hair | 14 Comments

I treated myself today to a haircut and eyebrow wax! I decided it was time to go shorter!!

Shake that booty!!

February 12, 2008 on 5:56 pm | In Joey, Videos | 7 Comments

Someone likes The Beatles as much as his daddy does!!

Photo and video editing at www.OneTrueMedia.com

Pretty boring week

February 10, 2008 on 4:05 pm | In Photos, Joey, Leah, Sports | 11 Comments

Not much has been happening, we’ve had a pretty boring week. Well… I take that back, THE GIANTS WON THE SUPER BOWL! I must say it’s the happiest I’ve seen my husband (besides our wedding and when Joey & Leah were born). I actually can’t think of anything to post about so I’ll leave you today with a couple new pictures…

“Pardon me while I drool.”

“Mmmmm, spagetti-o’s!”

“I didn’t do it… it was Leah!”

Mexican School of Down Art

February 10, 2008 on 2:17 pm | In Down syndrome, Articles | No Comments

Artists with Down syndrome win acclaim

By Jessica Bernstein-Wax, Associated Press

MEXICO CITY — Bending over detailed engravings and squinting at their canvases, art students in white smocks toil amid rows of easels. Their paintings tour fine art museums in the United States, Mexico and Europe, impressing connoisseurs.

Their work recalls paintings by expressionist masters, but these students have Down syndrome. Their accomplishments at the Mexican School of Down Art are shattering preconceptions about mentally disabled people — especially in the developing world where resources for the handicapped can be scarce, leaving many to struggle for dignity.

These students’ paintings and lithographs “shatter the stereotype that individuals with Down syndrome have no interior mental life of richness and complexity,” said Dr. David Braddock, who heads the University of Colorado’s cognitive disabilities institute and who helped bring their artwork to the Boulder Museum of Contemporary Art.

About one in 800 babies is born with Down syndrome, a genetic disorder that causes mental retardation, facial deformity and, often, serious heart defects.

And while not everyone with Down syndrome is artistic, art instructor Daniel Perez says his students’ disability helps them see the world more creatively. He sees them transform verbal shortcomings into symbolic art, with a fresh perspective that shines through in their paintings.

Continue reading Mexican School of Down Art…

New video

February 9, 2008 on 7:05 pm | In Down syndrome, Videos, Resources | No Comments

The Down Syndrome Association of Greater Cincinnati released a wonderful video that any new or expecting parent of a child with Down syndrome should see. Take the time to watch this wonderful video!

I wanna go!!!

February 7, 2008 on 7:26 pm | In Down syndrome, Vacations | 4 Comments

Buddy Cruise!!

Straight from their website… “Join us for this one of a kind adventure. The 3-night Bahamian cruise will depart Port Canaveral, FL on October 17, 2008. The event is designed to provide an opportunity for families from across America to come together and bring awareness to one of the most frequently occurring chromosomal deviations, as well as promote inclusion for individuals with Down syndrome.”

Flourish Network

February 4, 2008 on 3:58 pm | In Down syndrome, Internet Fun | 1 Comment

There is a new online network for parents who have children with special needs. It’s called Flourish. If you get a chance, head over and check it out. Once it gets more members and up and running, I think it’s going to be a great site for parents to connect and be able to chat.