RAISING JOEY

31 for 21, October 31st!

Well, it’s been a long month, but I’ve managed to post everyday! At first my goal was to post something Down syndrome related each and everyday, unfortunatly that didn’t happen but I managed to post something everyday at least!

To end my 31 for 21 posts, how about a very interesting article?

Treadmill training helps Down syndrome babies walk earlier

CHICAGO (AFP) - Treadmills can help infants with Down syndrome learn how to walk months earlier than traditional therapies, a new study has found.

Parents of 30 babies with Down syndrome were asked to help their children walk on the treadmills for eight minutes a day, five days a week.

They sat on a bench which straddled the machine and held their babies as the treadmill belt encouraged them to take steps.

This exercise helped the babies learn to walk up to four or five months earlier than traditional physical therapy alone, the study found.

More intensive training helped the babies to walk even sooner, the study found.

The intensity of the training for half the babies was increased gradually after the infant could take 10, 20, and 30 steps per minute.

The speed of the treadmill was increased, as was the length of training. Some children were also given light weights on their ankles.

Children with Down syndrome generally don’t learn to walk until 24-28 months, about a year after children without developmental disabilities.

Getting them walking sooner can help improve their social skills, motor skills, perception and spatial cognition, said study author Dale Ulrich of the University of Michigan’s Division of Kinesiology.

“The key is if we can get them to walk earlier and better then they can explore their environment earlier and when you start to explore, you learn about the world around you,” Ulrich said. “Walking is a critical factor in development in every other domain.”

Down syndrome occurs in about one out of every 700 births.

Ulrich said he hopes hospitals and support organizations will rent the treadmills — which cost about 1,200 dollars — to parents of children with Down syndrome.

The study was published in the October issue of journal of the American Physical Therapy Association.

**I just found the study. It was actually done in 2001 but it still seems interesting. I’m going to show it to Joey’s PT today and see what she says. Here’s the link to the actual study.

31 for 21, October 30th

I took Leah for her 6 week checkup this morning and boy I was surprised! She’s gained 2lbs, 5 oz and has grown 1 inch! I can’t believe she now weighs 9 lbs, 7 oz!!! That’s my girl!

I talked to the doctor about her colic. The poor thing is still screaming her head off and passes so much gas. And her gas smells AWFUL! I’ve cut most of the dairy out of my diet and it’s done no good. I’m not eating onions, garlic, broccoli, cabbage, nothing! And the milocon gas drops DON’T WORK! I just don’t think I have the frame of mind to cut the rest of the dairy out of my diet… I feel so selfish for saying that. I’ve been trying to list in my mind the pros and cons of breastfeeding verses formula…

BREASTFEEDING PROS

1. Breastmilk is better for her immune system
2. Breastfeeding will help me lose weight
3. Breastfeeding it cheaper than formula
4. It’s a special time for me and Leah

BREASTFEEDING CONS

1. Leah’s colic will most likely continue
2. My hubby can’t feed her unless I pump or we give her formula

FORMULA PROS

1. Leah’s colic might stop
2. My hubby can feed her anytime

FORMULA CONS

1. Formula costs so much money
2. It won’t help her immune system as much

I just don’t know what to do! I’ll update my lists to figure out what I’m going to do as I think of things…

How about a little update on Joey. He has been a tad bit cranky the past couple days. He has another tooth coming in. He hasn’t walked much since I last updated. He’s done it a total of 4 or 5 times now…

Not much else to post on today. I’m actually very tired and both kids are sleeping, I think I might try to go get a power nap! Toodles!

31 for 21, October 29th

Ok moms… don’t you just hate it when you go to get out all your pre-pregnancy clothes and none of your jeans fit?! Guess this means I need to go buy a couple pair to get me by until my old ones fit again. At least it’s chilly now and I can wear sweaters to hide the fat buldge

Article Time!

Mom: Don’t be so quick to disregard Downs child
By Monica Graham, Nova Scotia News

Screening pregnant women for Down syndrome could be a mistake, says the president of a provincial support group.

Most parents who find out their baby will be born with the condition choose to have an abortion, but they frequently act with inadequate and biased information, Renate Lindeman of the Nova Scotia Down Syndrome Society said Saturday.

“It’s a shock to find out your baby will have Down syndrome,” the Dartmouth woman said. “But health professionals give just a one-sided view — the medical view.”

That means parents mostly get a summary of health problems and developmental delays experienced by people with Down syndrome, Ms. Lindeman said, but they rarely hear from families with first-hand involvement so they don’t learn the positive side.

If parents do receive prenatal counselling, she said, it’s often from someone with no experience of Down syndrome, she said.

“The family life of a child with Down syndrome is not all that different” from the experience of other children, she said.

Continue reading Article Time!…

31 for 21, October 28th

We finally had a day nice enough to take Joey and Leah to the pumpkin patch to get their pumpkins. Of course, Leah slept through the whole thing so I don’t have any pictures of her actually at the pumpkin patch, I took some of her afterwards. But I got pictures of Joey!!!

Just look at this smile!!!

Also, how about a Leah video?

Make an on-line slide show at www.OneTrueMedia.com

Sweet Treat!

Jennifer from Pinwheels awarded me with the “This Blogger is one sweet treat to read” award yesterday. It made my day yesterday, thank you Jennifer!

I have decided to give this award to…

1. Shannon from Gabi’s World

2. Michelle from Elliot’s Expeditions

31 for 21, October 27th

Since I’m on a roll posting information about DS like I was earlier in the month, how about common traits & their descriptions that people with Down syndrome may or may not have (again thanks to the NDSS).

• Muscle hypotonia- low muscle tone
• Flat facial profile- a somewhat depressed nasal bridge and a small nose
• Oblique palpebral fissures- an upward slant to the eyes
• Dysplastic ear- an abnormal shape of the ear
• Single palmar crease- a single deep crease along the center of the palm
• Hyper-flexibility- an excessive ability to extend joints
• Curvature of the 5th finger, caused by under development of the middle phalanx (bone)
• Epicanthal folds- small skin folds on the inner corner of the eyes
• Excessive space between first and second toe
• Large tongue in relation to size of mouth

Newborn Needed for Filming of “Memory Keeper’s Daughter

*I just recieved this through the CDSC message board and wanted to pass it on to everyone incase anyone knows a newborn baby girl for this!!  

We have an assignment! Please help me out and forward this email to anyone you know anywhere in the US and Canada that might have contact with a brand new
Caucasian baby girl who has Down syndrome. Forward this to any list-serve you may be on for DS.The book “The Memory Keeper’s Daughter” is being made into a film for the Lifetime Channel. It is shooting in Nova Scotia in November.

They are looking for a baby girl born in October 2007 to appear in the film as the new born Phoebe. They only found one baby with DS born in 2007 and she is 6 months old. In Canada it is a law to screen every expectant mother for DS not just a guideline, scary isn’t it?I need to hear from any parent of a newborn who might want the opportunity for their little one to work in Nova Scotia in November 2007. I would also consider older babies weighing under 8 lbs. I know from my son Blair being a preemie he didn’t hit 8 lbs until he was about 4 months old. I have an agent that would negotiate all the details making sure to get appropriate pay and travel for the family. Please have anyone interested contact me at the DSALA office at 818-242-7871 or they can reach me by email at gail@dsala.org. Thank you for helping me with this search, and watch for the film on Lifetime next spring.

Gail Williamson
Executive Director
Down Syndrome Association of Los Angeles, Inc.
315 Arden Avenue, Suite 25
Glendale, CA 91304
818-242-7871 voice
818-242-7819 fax
gail@dsala.org
www.dsala.org

31 for 21, October 26th

A comment/ question people have for me when they find out that Joey has Down syndrome is about my age since I was 24 when I had Joey. I get the “But you’re so young to have a child with DS!” and the ever so popular “I only thought older women can have babies with DS.” So, thanks to a chart I found yesterday while thumbing through a pamphlet from the NDSS, I found this…

*thank you Steph for pointing out… there is a typo, the correct incidence of DS at age 27 is actually 1 in 1050

31 for 21, October 25th

Sorry about the lack of real posts lately, I’ve been pretty busy, lol! We’re all doing very well and I have wonderful news (no I’m not pregnant again!)… Joey took 2 steps unassisted and he’s done it 3 times now!! And of course, each time he’s done it, I’ve not had my camera near by. I’ll catch him one of these days!!!  Leah has also reached her first milestone, she’s already smiling! And I’m not talking about when she passes gas or is falling asleep, I mean when someone is holding her and talking. And again, I haven’t gotten a picture of it yet…

Today I volunteered for the CDSC manning their booth at a physicians’ conference. It was nice being able to share a parents’ view of DS with medical professionals (although many walked by without even stopping at our booth). It’s not often we get to do so outside a doctor’s office or hospital. While sitting there, I got to read through some of the literature that we were handing out and found the chart posted at the bottom of this post.

Occasionally a friend or family member asks me when Joey might reach a certain milestone and like any typical child, children with DS are all so different there is no set time period, although I did find this chart today and wanted to share it.

31 for 21, October 24th & Wordless Wednesday

For more Wordless Wednesdays, go here.

31 for 21, October 23rd

Somebody has learned how to turn on the TV by himself (and he thinks it’s funny)… need I say more? I think I will be making a trip to the store to buy one of these today. Oh the joys of a very soon upcoming toddlerhood!

In other news, Michelle from Big Blueberry Eyes awarded me with The Community Blogger Award! (The Community Blogger Award celebrates people who reach out and makes the blogger community a better one.) Thank you Michelle!!

And I’m giving this award out to:

1. Nicole from All 4 My Gals
2. Tricia from Unringing The Bell (thank you so much from hosting 31 For 21! )

31 for 21, October 22nd

And an added bonus today for your viewing pleasure… how about Joey having fun playing with his leftover spaghetti sauce from the other night?!

Make an on-line slide show at www.OneTrueMedia.com

Leah’s Baptism

Yesterday was Leah’s baptism and we couldn’t have had a more beautiful day! She slept through the first part of the baptism only to wake up as the deacon poured the Holy water over her head (which of course made her cry). Afterwards we had a party at my in-laws house and had a blast, good times were had by all!

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

31 for 21, October 21st

How about 21 things you might or might not know about me?!

1. I grew up in a small town between Dayton and Cincinnati, Ohio
2. I love watching NASCAR… Dale Jr is my favorite!
3. Toby Keith is my favorite music artist
4. I collect turtles
5. In college I took over 3 years of sign language
6. I also majored in Occupational Therapy for a short time
7. I don’t eat fish or any seafood
8. My favorite color is purple
9. I grew up an only child…my half brother is 16 years older than me
10. In junior high and high school I played the clarinet, bass clarinet and tenor saxaphone
11. I’ve worked as or at a florist, pie bakery, 3 nursing homes, temp agency, nanny, Disney Store, garden center, and a farm market (just to name a few)
12. I’m a better baker than a cook
13. I love scrapbooking!
14. I met my hubby at a nursing home
15. My favorite vacation spot is Disney World
16. Although I do love to go to my family’s place in West Virginia!
17. I’m an awful ironer. I can’t iron a shirt to save my life!!
18. I shake my leg constantly… it drives my family insane!
19. I love to sew but like scrapbooking, it’s so hard to find the time anymore!
20. My favorite meal is my mom’s meatloaf, scaloped potatoes and baked beans
21. I’ve seen Lynyrd Skynyrd in concert 7 times

31 for 21, October 20th

Victoria’s Day By Maria de Fatima Campos

“Like any other preschooler, Victoria is engaged by the world around her, excited to play with her friends, sometimes happy, and sometimes not. But unlike her peers she has Down’s Syndrome. This thoughtful book follows Victoria on her typical day as she integrates into a mainstream nursery school. Young readers can compare and contrast their own experiences with Victoria’s as she reads a book, paints, bakes biscuits, and plays games. Though she may look a little different, the book shows that Victoria is really not so different after all.”

Reading level: Ages 4-8

Hardcover: 32 pages

31 for 21 Secret Blogger Gift Exchange

For those of you who have been participating in the 31 for 21 posts on your blogs and are interested, Tricia is hosting a secret blogger gift exchange, head on over to Unringing the Bell for more details!!

A Father’s Love

A wonderful tribute to a young lady (who happens to have DS) for her 18th birthday from her father. Don’t know if it’s my hormones still all crazy from giving birth a month ago but this one brought tears to my eyes!

Time changes everything

Age leads to new beat in life’s dance

By Paul Daugherty

Jillian turned 18 Wednesday, youth-to-woman, some secret threshold crossed, no turning back. I saw her differently.

She got a necklace for her birthday, a couple pairs of shoes and $70 cash. She liked the cash. “Seventy bucks!” she said. “Big money.” Children will always be children in their parents’ eyes. But the young lady before me bears no resemblance to the girl I saw yesterday.

Yesterday. . .

I grabbed her up from her spot in the hospital crib. She was no larger than a thought. Six pounds and some, six weeks old. I hummed her an old standard from the early ’60s. The Spaniels, I believe. “Goodnight, My Love.”

” … Pleasant dreams, sleep tight my love.

“May tomorrow be sunny and bright.”

We danced. After a few minutes, she was asleep. The doctors at Children’s took her from me and reconnected the tubes that kept her hydrated. Jillian had bronchiolitis. She was dying to breathe.

And then she wasn’t. After a week or so, not long after the doctors said we might need to put Jillian on a respirator, a nurse stuck a needle in her heel. That ticked off my daughter sufficiently enough, she screamed aggravated homicide. The yowling dislodged enough gunk from her lungs, she started to breathe normally.

She gets her temper from her mother.

Yesterday, Jillian was 6 and playing soccer. Very hard, and well enough for a kid with a disability. Then she was 10 and 12 and 14 and acting in the middle school play. She was 15 and managing the high school volleyball team and 16 and dancing on the JV dance team and … dating.

Continue reading A Father’s Love…

31 for 21, October 19th

Wow, it’s hard to believe a month has come and gone… LEAH IS ALREADY ONE MONTH OLD!!! Can you believe it? It just seems like last week that I was pregnant and miserable!

And I can’t leave out Joey!!

Another chance to win!

If you entered Christina’s contest to win a copy of Cony Wenk’s book, Three Little Butterflies and want to double your chance to win, Cony is also giving away 3 copies of her book on her blog! Head on over to enter for a chance to win!!

31 for 21, October 18th

Cottondale farm provides employment for people with disabilities

By Peggy Ussery, dothaneagle.com

Christal Thompson liked the horses, cows and pigs the best at Majestic Oak Farm.

But it wasn’t the first time the 5-year-old, a recent Miami, Fla., transplant, had seen such livestock. Christal recently joined her kindergarten class from Kate M. Smith Elementary in Chipley on a tour of the 40-acre farm in northwest Florida.

“I seen horses and cows when I went riding with my grandma in the country,” she said.

Christal and her classmates got a brief look at the easier side of farm life during their visit to Majestic Oak — petting hens, feeding fish, lunching in the shade.

Majestic Oak Farm, however, is no ordinary farm. With rows of blueberry bushes, blackberry vines, vegetables, mayhaws and peach and nectarine trees, the farm’s main purpose is to offer seasonal employment to people with developmental disabilities.

Glenda and Christopher Hutzel, who grew up on an Ohio fruit farm, bought the property on Palmview Road on the outskirts of Cottondale in 1997. It wasn’t their intent to farm the land. But when their son, who has Down syndrome, got ready to graduate from high school, the Hutzels were inspired because they saw a need for employment opportunities for those with developmental disabilities.

In 2002, the non-profit organization I Can Grow Inc. was born.

Continue reading 31 for 21, October 18th…

Wordless Wednesday

For more Wordless Wednesdays, go here.

31 for 21, October 17th

How about an article this morning to get us started?

Woman with Down syndrome loves independence By Patti Zarling, Green Bay Press

 Instead of recommending institutionalization for children with Down syndrome, doctors are now talking to parents about programs available for their young ones.

In Brown County, ASPIRO is one of four agencies that provides services for people with Down syndrome. Formerly the Brown County Association for Retarded Citizens, ASPIRO started in 1957. It serves 1,800 individuals and families through nine different programs.

Contract agencies in the community provide services to children between birth and age 3.

Eligibility for services is determined by looking at different areas of development. Services are offered in the home and or the community.

Services are provided at home because family members are a child’s first teachers and spend the most time with the child.

When services end at age 3, a child is referred to the school system for Early Childhood. Children with special needs are served in the school system until 21. Between 18 and 21 a transition specialist from ASPIRO works with the students and their families to prepare them for work or day programs after graduation.

Case worker Ann Bruss said a philosophical shift came in therapy about eight years ago. In the past, clients were brought to clinics for therapy. Now therapists come to the home.

“We figure parents work with them all the time, so we should come to their settings and work with them there,” Bruss said. “Parents are kids’ first teachers. Now we have a family connection.”

Katy Landwehr, a 29-year-old who has Down syndrome, learned to live independently at Syble Hopp School in De Pere.

Now she usually takes the city bus to her job at Fazoli’s Restaurant on West Mason Street, where she’s worked for eight years. She does a bit of everything at the restaurant — make and serve breadsticks, serve as hostess, wash dishes, clean and take out the garbage.

“I help keep up with everything that needs to get done,” she said.

And at the end of the day, like many other 29-year-olds, Katy comes home to her own apartment, where she cleans, cooks, watches movies, takes walks, or hangs out with friends or her roommate.

“I love it,” she said.

Continue reading 31 for 21, October 17th…

Time Travel Tuesday- Most Adventurous Thing!

This week for Time Travel Tuesday we travel back to…

“Tell us the most adventurous thing you have ever done! What gave you the courage to do it or try it and how did you feel afterwards?”

I’m not really an adventurous person. I don’t skydive or scuba dive. Heck, I don’t even go snow skiing! I have a pretty boring life, lol!

For me, the most adventurous thing I’ve ever done was actually moving away from home (15 hours away at that!). I lived with my parents until the day I got married. I never went away to college, I lived at home while I went to school. And having a brother who is 16 years older than me, I grew up an only child so being away from my parents really has been an adventure! I always had them to lean on whenever I needed anything!

For me, one huge part of my adventure was driving on the roads here in Connecticut compared to driving in Ohio. Let me tell you, there’s one HECK of a difference. Anyone who lives on the East Coast can tell you how crazy driving on I-95 can be!! I was so used to driving on the slow paced farm roads in Ohio and suddenly it was like kill or be killed on the highway!

Another big part of my adventure was getting pregnant not even 2 months after our wedding and not having my mom there in person to help and guide me. My mother in law is close by, but like I’ve said in the past, there’s nothing like your own mom! Thank goodness for unlimited long distance phone calls!!!

For more Time Travel Tuesdays, go visit My Life As Annie!

31 for 21, October 16th

The day my son was born the sun shone in the sky
My life would change forever and here’s the reason why
You see my son is different, things did not go as we planned
For my son was born with a line across his hand

A line across his hand
A line across his hand
Things did not go as we planned
Because of the line across his hand.

They said that he would be slow too learn and never read or write.
But when he took his first steps it was a special night.
They said he’d never be a man and always be a burden
But he’d show them wrong, it was the one thing I was certain

A line across his hand
A line across his hand
When his hand’s held in mine
I can’t see that line across his hand

Oh how very hard it was to learn to tie his shoe
There were days we thought it was something he’d never ever do
But then one day he made the bow up right and neat
Oh, his life ain’t always easy but his victories are sweet

A line across his hand
A line across his hand
That shoe lace didn’t care
there was a line across his hand

I always dreamed we’d play with a baseball and a bat
but in our life together we jog the High School track.
There are many things that he can do and things that he can not.
He’s much more than the sum total of the syndrome that he’s got.

A line across his hand
A line across his hand
Don’t judge who he is by
that line across his hand.
If I had the power to change his life I’m not sure what I’d do
But his life has been a blessing ‘tho I’ve shed a tear or two
I love my son more then I believed all those years ago
I guess in this life we do reap what we do sow

A line across his hand
A line across his hand
Doesn’t change the love you feel in side
that line across his hand

Now my son is grown and holds a job and has a lady friend
He is proud and kind this message I will send

A line across his hand
A line across his hand
They were wrong, I know that now
this boy of mine’s a man

By Deborah L. Sardone