RAISING JOEY

Contest Time!

It’s been a while since I’ve posted a good contest… how about this AWESOME giveaway from the Pinks and Blues Girls?! Does a Phil and Teds Vibe Stroller sound good to you?? With a retail value of $599 + $110 for the double kit, this is something we could really use around here with Joey and Leah. Head on over to Pinks and Blues Girls for your chance to win!!

A Life Worth Living

A life worth living 

By Renate Lindeman, Citizen Special

Monday, January 28, 2008

I grew up with Corky in the late eighties and early nineties. Corky was the young man with Down syndrome, played by Chris Burke, in the hit TV-series Life Goes On. Corky was loved by his Hollywood family and audiences alike. It was hard not to sympathize with this caring, open minded, and outgoing teenager as he enters regular high school, tackles learning difficulties, turns enemies into friends and succeeds in finding his rightful place in the community.

This wonderful series taught me to see Corky, (and others), beyond their disabilities, and that was a lesson I will carry around in my heart forever. Having been exposed to positive role-models with a disability also made the conversation my husband and I had about pre-natal screening a lot easier, when I found myself pregnant at age 36. We both felt strongly that we would love this baby no matter what. It would not make a difference to us if our baby would be a boy, a girl, extremely smart, athletic, or have Down syndrome. Besides, what was the big deal?

A funny thing happened when we relayed our decision to decline pre-natal testing to the medical staff. The staff referred to my pregnancy as “in the hands of God.” Naive, I thought the staff at this hospital must be very religious. Today, I realize that the issue of pre-natal screening for many is seen as an anti-abortion issue. However for me and my husband, both pro-choice, it was more an issue of a woman’s rights, and of (dis)ability discrimination.

Our first baby was born with Down syndrome. Although we had discussed this possibility earlier, “the syndrome” still came as a shock. But we knew we could cope and quickly recovered. We started educating ourselves seriously about Down syndrome and bought the series Life Goes On on DVD and started an early intervention program.

A whole new way of life opened up for us. A life where everything happened at a slower pace, but with an intensity we could never have imagined. And, in the process we started meeting new people, a better class of people. Life went on.

Continue reading A Life Worth Living…

The shot of a lifetime

*Be sure you go on the website, there’s a nice video too

The Shot of a lifetime 

By Jamie Apody

CHERRY HILL, N.J. — A remarkable young athlete has developed a big following.

At first glance, it was just your run of the mill three-pointer in a high school hoops game.

“He comes down with three seconds to go and makes the final shot. It was an amazing shot,” said his dad, Bob Hennefer.

And then you notice, the coach on the opposing team came over to shake the Brad Hennefer’s hand.

“It was unbelievable. He got a standing ovation,” said John Valore, Cherry Hill East coach.

Continue reading The shot of a lifetime…

Getting crazy with the CheezWhiz!

Up until now, we couldn’t get Joey to put anything solid in his mouth besides his spoon, no biter biscuits, crackers, ect. That was until I tried CheezWhiz & a biter biscuit!! Another eating milestone! It may seem like nothing to most parents, but when you have a child who will barely put anything in his own mouth, it’s a lot and I’m so proud!!!

Photo and video editing at www.OneTrueMedia.com

Down Home Ranch

Down Home Ranch sprang from parents’ devotion to daughter

By Andrea Ball, AMERICAN-STATESMAN STAFF
Sunday, January 27, 2008

It is a cold day in Lee County; 33 degrees at last check.

But there is work to be done — work that doesn’t wait for sunny skies and warm temperatures. So the crew at Down Home Ranch forces itself into the bitter air and does what needs doing.

They feed the one longhorn, the nine horses, the dozen donkeys and the 12 Angus cattle. They muck stalls and clean equipment. They check fledgling plants in the greenhouses.

“These guys have worked hard,” says program assistant Debbie Cengel as the barn crew warms up in a heated office.

“I oiled the saddles,” says Liz Smith, 25, who has Asperger’s syndrome, lives on the ranch and loves horses.

“That’s great,” says Jerry Horton, co-founder of Down Home Ranch. “You know what happens when you work hard and impress your boss? You might get a raise.”

It’s a teaching moment. There are a lot of those here.

Down Home Ranch is a working farm for adults with disabilities. The ranch was inspired by Judy and Jerry Horton’s daughter, Kelly, who was born with Down syndrome in 1984. The Hortons soon realized that programs mostly catered to children. They wondered: What would Kelly do as an adult?

Continue reading Down Home Ranch…

A couple meme’s

I was tagged last week by Michelle to post about my loves and hates so here we go…

LOVES

• my husband
• Leah & Joey
• fleece PJ’s
• Dr. Pepper
• Leah’s chubby cheeks
• Joey’s crooked pinky fingers

HATES

• The R word
• seafood
• raw tomatoes
• people who are prejudice
• A sink full of dirty dishes
• Crazy, bad drivers

I was also tagged yesterday by Amy to share my Then & Nows.

Leah as a newborn

Joey as a newborn

Leah now

Joey now

I tag anyone who hasn’t done either of these yet!

Happy Friday!

TGIF, that’s all I can say! It’s been a long week and thankfully it’s over! And we’re even getting out again tonight! That’s two weekends in a row my husband and I have gotten out and boy, it feels good to say that!

Onto other news, thankfully my lip feels much better after Joey tried to take a chunk out of it. And yesterday we took Joey to the dentist for the first time. It went much better than what I was expecting. Joey got upset but not nearly as upset as I thought he would. And the staff was so nice! The dentist was very knowledgeable about Down syndrome and was very happy to see how well Joey’s teeth are actually doing. He just has to get in the other 3 canine teeth (one of which is getting ready to pop through) and he will have all of his teeth he should. I was very worried about how crooked his teeth are but mostly because his gums have been bleeding everytime we brush his teeth. Thankfully, the dentist said his gums are fine and gave us a softer toothbrush to use.

Well, I’d write more, but Leah is crying! Everybody enjoy your weekend!

Man! Them are some sharp teeth!

Wow… I’m on a roll posting these past 2 days! It’s been a while since I’ve posted this much! Anyways, have I ever mentioned how sharp Joey’s teeth really are? Let me tell you, those boogers are SHARP! Remind me to never again go to give Joey a kiss when he’s over tired and slap happy. I went to give him a kiss tonight before bed, and snap! He bit down on my lip like a little alligator and wouldn’t let go! How blood wasn’t drawn, I have no clue, thankfully there wasn’t but my lip and the skin around it is still red and very sore.

Speaking of his teeth, Joey has his first dentist appointment on Thursday. This is going to be interesting… wish us luck!

With some leftover Christmas money, I bought “Life Goes On” season 1 and finally got around to watching a couple episodes this evening. It was the first time since it was on TV that I’d actually seen it. I guess back then I didn’t realize how much of the show was actually centered around Corky having Down syndrome.

And, with that, I think I am off to bed. Both of the kiddos are in bed and ASLEEP so I should be too!

MayBell’s Soaps & Candles

Need some soap or candles? How about heading over to MayBell’s Soaps & Candles? Two young ladies whose sisters have Down syndrome have started their own business to raise money for Down syndrome. What a wonderful way to be advocates to their little sisters and raise money for such a good cause! Did I mention that the candles and soap are all natural and made from soy and natural oils?

New Blog!

How about a new blog to start off your week? Hidden Treasures is a wonderful blog made by parents whose children have Down syndrome to help share their stories of the joy their children can bring. Check it out!

Hidden Treasures

I can’t believe I forgot…

I completely and totally forgot that yesterday was Leah’s 4 month birthday! I can’t believe my baby girl is already 4 months old!!!

And poor Joey, he can’t catch a break these past 2 days. Yesterday after I posted about him falling and hitting his head, he fell again and hit the other side of his head (thankfully no goose egg). And then this morning while eating breakfast, he bit his lip so hard that it started bleeding. Again, I felt so bad. The poor thing looks like he’s been in the boxing ring, LOL!

Last night, Patrick and I went out to dinner and a movie with some friends. It’s been a while since we’ve done something like that. It was so nice to get out with other adults and no kids!! We saw “I am Legend” with Will Smith. It was a good movie, a little disturbing in parts but good.

After we got home and put the kids to bed, I had to put the Simpson’s Movie in so I wouldn’t go to bed and think of zombies jumping out of dark corners, lol!! I went to bed after watching “Alien” a couple weeks ago and laid awake in bed for about 2 hours. You would think being almost 27 that a person wouldn’t be scared after watching a movie but sometimes, one’s imagination can take over.

I just finished my latest project, a picture book for Joey. His therapist suggested that I make him a book with all of his favorite people, foods, toys, ect… so I finally got that done just before I started writing this. So as soon as he gets up from his nap, we’ll look at it together.

I guess that’s it for now! Enjoy the rest of your weekend!

Walking, eating, signing, growing & more!

Joey is walking up a storm. He pretty much walks everywhere now and only crawls when playing on the floor to get a toy that’s a few feet away. I’m so proud of him for how good he’d doing! Still about the same in eating solids. He won’t eat anything “hard”, cookies, crackers, toast, veggie sticks, ect… BUT, he’s a pro at eating pasta!  I swear, you would think the kid was Italian rather than Irish!! It’s not that he doesn’t know how to chew, he can chew his food, it’s the textures. He freaks out everytime anything hard touches his mouth. He is doing VERY well at feeding him with a spoon, still won’t use his fingers to eat, but will eat with a spoon. And minus the one bottle of milk he drinks before he goes to bed, he only using a cup with a straw to drink from now. My baby boy is growing up right before my eyes! I can’t believe in less than 2 months he will be 2 years old!

Still not much in the way of talking. He does babble a lot, mostly “dada” with the occasional “mama”. We have noticed since we got his ears cleaned out a couple weeks back that he is much more verbal. He’s starting to sign back to me whenever I sign something to him. The two signs he does use on his own is “all done” and “eat”.

His favorite thing is Elmo… whenever Elmo is on TV or his Tickle Me Elmo is laughing, he’s so into it. He cracks me up sometimes…

Nothing to report about potty training… we’ve been trying and he does very well sitting on the potty but still has yet to go potty on it.

In other Joey news, he fell and hit his head on our TV stand this morning. Lovely goose egg on his forehead and a small gash. If he would have hit any harder, we would probley be at the ER getting stitches. I felt so bad for him. It’s hard to see him hurt and crying like that, it about broke my heart. The picture doesn’t do justice on how bad his head really looks, he wouldn’t let me get a good picture of it, lol!

Onto Leah. She’s doing great! Getting bigger everyday. She wears mostly 3-6 month size clothes now, still a couple 0-3 month things but mostly 3-6. And it’s not going to be long until I have to buy the next size up in diapers!

 Both of my kids are getting so big!

I decided to get my Notary Public certification. Not really a lot of money in it but it will really help my husband out with his work whenever he does any home closings or writes a will or trust for someone. Not to mention, when/ if I ever go back to work, it will look good on my resume.

I also joined the CDSC’s board of directors. I’m one of 2 representatives for New Haven County. I started a monthly Parents Night Out/ support group for our area. We met last week for the first time. The turnout was small but a lot of fun getting out with the kids!

I just had to…

NDSC Press Release

*The following is an email I recieved from the National Down Syndrome Congress in response to the ACOG and their views on prenatal diagnosis of Down syndrome & abortion.

——————————————————————————————————–

Dear NDSC Members,

Last month, the American College of Obstetricians and Gynecologists (ACOG) released their Practice Bulletin 88, which expanded on their earlier Practice Bulletin 77 regarding prenatal screening and invasive diagnostic testing for Down syndrome. 

Below is the NDSC response, which was endorsed unanimously by your Board of Directors at their mid-year meeting in Boston last weekend.

The statement expresses the Board’s concerns with the Practice Bulletin, but also recognizes ACOG’s reference to referrals to parent groups when a diagnosis is made.  This is a positive step and we look forward to working with ACOG to ensuring that all patients are given accurate, up-to-date information.

This statement was released to the press January 15^th.

Thank you for your support of NDSC’s advocacy efforts. If you’d like an electronic copy of either of these Practice Bulletins, please contact sue@ndsccenter.org for a PDF copy. You can also read our January 2007 response to Practice Bulletin 77 on our website at this link: http://www.ndsccenter.org/news/pressRelease.doc

David Tolleson

Executive Director

National Down Syndrome Congress

FOR IMMEDIATE RELEASE

CONTACT:    DAVID TOLLESON

                        770/604-9500

ATLANTA (January 15, 2008) – In its December 2007 Practice Bulletin 88, the American College of Obstetricians and Gynecologists (ACOG) expands on its position regarding invasive prenatal diagnostic testing for Down syndrome, which was originally outlined in its January 2007 Practice Bulletin 77.  The main recommendation is “invasive diagnostic testing should be available to all women…Maternal age of 35 years alone should no longer be used as a threshold to determine who is offered screening versus who is offered invasive testing.”  Though the guideline states “prenatal diagnosis is not solely performed for assistance in the decision of pregnancy termination,” the implication is that a baby with Down syndrome is a bad outcome that should be avoided. 

Continue reading NDSC Press Release…

Wordless Wednesday

For more Wordless Wednedays, go here.

Under construction

Check back soon for Raising Joey’s new look!

It’s time…

I’ve decided it’s time to start potty training Joey. He’s going to be 2 in March so it’s time! Wish us luck! I’m sure there will be many posts on potty training to come! I will leave you today with a couple pictures my brother emailed me from Christmas and I just have to share…

Happy Birthday Joe!

Happy birthday to my father in law, Joe… I hope it’s a good one!!! Thank you for being such a great father, FIL & Grandfather!

Leah 3 1/2 month checkup

I just got back from Leah’s 3 1/2 month check up with her pediatrician. She now weighs 11 pounds, 14 ounces. That’s a 2 lb 7 oz gain since her last appointment! Also, now she’s 23 1/2 inches long, she’s grown 2 1/2 inches! Doc B had nothing but great things to say about Leah. He can’t believe how great she is doing!

And as for last night’s OSU game, I have no comment. I’m in a state of mourning…

Another milestone!

I’ve been meaning to post this video since we got home from Ohio but I keep forgeting until now… guess what Joey does now?!

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

In other news… being from Ohio and seeing that the National Championship College Football game is tonight… GO BUCKEYES! O-H-I-O!!!

Wordless Wednesday

For more Wordless Wednesdays, go here.

A year in review…

2007 started out saying goodbye to Joey’s helmet. After 18 weeks of him wearing it, we were ready to be rid of it. January ended by finding out that we were expecting our second child!

February had two wonderful milestones for Joey his first tooth, and he started going from laying to sitting all by himself! We also got our first look at Leah!

March was a very busy month. On the 14th, we celebrated Joey’s first birthday.  The 21st, DS parents around the world celebrated World Down Syndrome Day. We also went to Chicago for my brother in law’s wedding. The end of the month we celebrated my birthday.

We started out April in Ohio with my family for Easter and for a belated birthday party for Joey. In the midst of my frustrations with Joey and trying to get him to eat solid foods, he achieved another milestone… holding his own bottle! We also found out that we were expecting a baby girl!!!

May was a pretty calm month… we had another trip to Ohio and my hubby & I celebrated our second wedding aniversary

In June, Joey started pulling to stand & he discovered his love for the TV.

July was a long month full of new teeth and Senators Kennedy & Brownback’s bill being introduced back to Congress.

 We had another trip to Ohio in August. I also was started to get very uncomfortable and started nesting in preparation for Leah’s arrival!

September started out with a false labor and ended with a c-section and we welcomed our beautiful baby girl, Leah Rose into the world. Less than a week after giving birth to Leah, we went to our second Buddy Walk.

October was Down Syndrome Awareness month and along with other bloggers, I managed to post everyday (but one or two), mostly about Down syndrome & Joey.

November was such a crazy month, I didn’t get to post as much as I would have liked but one post that comes to mind was this one. We also celebrated Thanksgiving here in Connecticut with my in-laws and my parents who came up for a visit.

In December, Joey had his biggest and best milestone to date… he started walking! He also had one heck of a cold that he decided to share with Leah. My sister in law, Eileen and I took the kids to visit Santa. We took the kids to Ohio for Christmas to celebrate it with my family. It was also Leah’s first trip to Ohio to meet my family. We ended 2007 here at our house. Patrick and I fell asleep about 11:50 and woke up at 12:05

I can’t wait to see what 2008 has in store for us!!! Happy New Year everyone!