Wordless Wednesday/ Special Exposure Wednesday

July 29, 2009 on 8:54 am | In Photos, Joey, Wordless Wednesday, Special Exposure Wednesday | 5 Comments

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For more Wordless Wednesdays, go visit 5 Minutes For Mom.

For more Special Exposure Wednesdays, go visit 5 Minutes For Special Needs.

Weekend of fun!

July 28, 2009 on 3:41 pm | In Down syndrome, Friends, Charity, CDSC | No Comments

For me anyways, we decided to keep the kids home since Joey is being taken off his stomach medication, we didn’t know what kind of “surprises” we may get, along with the fact that lately, we just don’t know how Joey’s is going to behave. So I went out and volunteered my time for my favorite non-profit organization, The Connecticut Down Syndrome Congress.

Anyways, Saturday was the CDSC’s Summer Picnic and being on the board of directors, I thought it was important that I be there to help out in any way that I could. I had a great time, I ran the registration table and was able to sit under a nice shady tent all day out in the beautiful weather! I also got to put more faces with the names of CDSC families!

Holly, Sam and I at the registration tent!
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And of course, I got to see two of my favorite people, Melissa and Dillon!
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Sunday was the 2nd Annual Benefit Ride and Concert for Corey where all the proceeds went to the CDSC. Again, I was able to sit under a nice shady tent out in the beautiful weather and this time, listen to awesome music by The Whiskey River Band!

Me, Corey and his mommy, Cecily!
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Bikers have the biggest hearts!!!
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And I got to see Melissa and Dillon 2 days in a row!
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The Whiskey River Band who generously donated their talent for such an awesome cause!
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new book!

July 27, 2009 on 12:42 pm | In Down syndrome, Books | No Comments

Author inspired by special needs child
Sunday, July 26, 2009
By LESLEY FARREY PACEY

PASCAGOULA Hurricanes, hardship and the death of son couldn’t stop Mike Gilly from sharing his story of a special needs stepson who brings him joy.

Against all odds, the Pascagoula man’s first book, “Best Friends, The story of Derek,” published by Bezalel Books, was released this month four years after Hurricane Katrina destroyed virtually all of the copies of the original version.

“My intent was to self publish the book,” said Gilly (pronounced Jilly). “We went to a local printer and made 500 copies in 2005. About a month later, guess who shows up? Katrina.”

The books were in three stores. One store was flooded. Another storeowner put the books in his car, which was swept away by floodwaters. The other store was vandalized.

But that didn’t discourage Gilly, whose home was devastated by water damage during the hurricane.

After picking up the pieces of his life, he picked up where he left off in the book.

A labor of love honoring best friends, the newly expanded book that now also includes stories from 2005 through 2009 is a tribute to Gilly’s stepson Derek Medjesky, who has Down Syndrome, and his friendships with Pat McIlwain and Matt Deason.

Gilly’s book is available on the Internet at amazon.com or barnesandnobles.com or locally at Bayou Rentals on Ingalls Avenue in Pascagoula.

“I wanted everybody to know the story about Derek and Pat,” Gilly said, adding that McIlwain also has Down syndrome. “They have been big buddies since they met at the Jackson County Exceptional School and they are still big buddies. Throughout their friendship, these two guys have done some funny, funny stuff.”

The father of six and grandfather of seven had been collecting heartwarming and humorous stories about Derek since 1988, when the boy was in junior high school. The book also includes Derek’s exploits on the Pascagoula High School football team.

“The hero of the book is Coach Dan Bland,” said Gilly. “Coach Bland was wonderful to Derek.”

The former Pascagoula High School football coach included Derek on the football team after Derek’s mother Karen asked if he could play.

“We expected Derek to be a water boy or something,” Gilly said. “But Derek put on pads and played in the junior varsity games. He ended up getting 15 career touchdowns.” Continue reading new book!…

Prenatal Diagnosis Article

July 27, 2009 on 12:36 pm | In Down syndrome, Articles, pre-natal testing | No Comments

A recent article about prenatal testing and how doctors are handling the results.

Part I: Diagnosis: Down Syndrome——————————————————————————–
By AMY NEFF ROTH
Healthy Living
Posted Jul 27, 2009 @ 06:00 AM

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CONSTABLEVILLE — Genetic testing can tell pregnant women whether their baby has Down syndrome.

It doesn’t tell them what to do about it.

Basically, women have three options: keep the baby, put the baby up for adoption or abort.
Pre-natal testing can give families more time to prepare for a child with special needs or to arrange for an adoption. (There’s a six-month waiting list to adopt babies with Down syndrome.)
But most women choose abortion.

“Most recent studies suggest 80 to 90 percent of mothers with definitive diagnoses will choose to terminate,” said Dr. Brian Skotko, a resident at Children’s Hospital Boston and Boston Medical Center, who has researched how doctors deliver the Downs diagnosis and has written two books about Down syndrome.

The way doctors tell expectant mothers about the diagnosis probably contributes to the high abortion rate, Skotko said.

Skotko, who has a sister with Down syndrome, surveyed mothers of children with Down syndrome who said that their doctors offered inaccurate, incomplete and even “offensive” information.

“So the provocative question is – are mothers making an informed decision?” Skotko asked.
Skotko and Dr. Fred Hirschenfang, medical director for the JUDY Center for Down Syndrome in Hackensack, NJ, spoke on presenting and understanding a prenatal diagnosis of Down syndrome at a conference in May at the Otesaga Resort Hotel in Cooperstown. The conference was sponsored by the Kennedy-Willis Center on Down Syndrome at Pathfinder Village in Edmeston, a residential village and school for people with Down syndrome.

Down syndrome is a genetic disorder in which babies are born with an extra 21st chromosome. It generally causes mild to moderate retardation, distinctive facial features and a higher risk of a host of health problems.

The number of families facing a prenatal diagnosis of Down syndrome will probably increase in the near future.

Two reasons, first, the American College of Obstetrics and Gynecology changed its guidelines in 2007 to recommend that genetic screening be offered to all women, and recommends diagnostic testing for those found to be at high risk.

In the past, the testing was generally only offered to women ages 35 and older because diagnostic testing – amniocentesis and chorionic villus sampling – carry a slight risk of miscarriage and older women face a higher risk of having a baby with Down syndrome.

And researchers are testing a new, risk-free blood test that, according to preliminary results, can diagnose Down syndrome during the first trimester without the risk of miscarriage, presumably convincing more women to undergo testing and allowing for earlier abortions.

No one knows if the test, which could become available over the next several years, would actually lead to more abortions, but Edward Shafer, Pathfinder’s CEO, is worried.

“Over time, we (could) lose a whole element of human diversity,” he said.

For now, advocates say, doctors need to get better at breaking the news to parents.

Rosanne Pesola, director of the Kennedy-Willis Center, recounted the story of a pregnant woman who recently received a prenatal diagnosis of Down syndrome and called the center for information. She said her doctor had, after delivering the diagnosis, asked her when she wanted to schedule an abortion, said.

“And this happens all the time,” Pesola said. “It’s the lack of sensitivity of the message coming across.”

“Let’s be factual, let’s be gentle and let’s be sensitive when we deliver this message to people,” Pesola added.

To do that, Hirschenfang said, doctors must be educated about Down syndrome themselves. They need to talk about the positive aspects as well as the challenges of raising a child with Down syndrome. Continue reading Prenatal Diagnosis Article…

Huh???

July 24, 2009 on 2:55 pm | In Joey, Joey GI, Lymphocytic Colitis, Sensory Processing Disorder, Celiac Disease, Gluten Free Diet | 2 Comments

Joey finally had his appointment this morning with his GI doctor. I’m so grateful that we went and got the answers I did!

I mentioned Joey’s changes in his behavior to Dr. Z and she was VERY concerned and is wondering if it’s the stomach medication (Pentasa) he’s been put on. She looked back into his chart and the time he was put on the medication is just about the same time his behavior started changing.

I mean, he’s always been a sensory kiddo but even with the sensory issues, his personality has definetly changed along with being more sensitive to his surroundings.

So, we’re taking Joey off his medication cold turkey for 2-3 weeks to see if there’s any improvement in his behavior. In the mean time, we’re going to be giving him Immodium to try to help to keep his BM blow outs at a minimum.

If there is no change in his behavior, he’ll go back on the Pentasa and we’re going to try a Glutein free diet.

Even though Joey was tested for Celiac Disease in April when he had the colonoscopy done, he may still have it. Apparently, Celiac Disease and Lymphocytic Coloitis come together a lot.

So, keep your fingers crossed that we get a good answer and the old Joey comes back to us!

I also spoke to Joey’s genetic doctor, Dr. Bob, and he is also concerned and wants Joey to go see a neurologist. I’m maybe wondering if we should hold off long enough to see if this change in medication works….

We are still going to go through with having the Sensory Processing Disorder evaluation done next week by an occupational therapist to see what she has to say.

So, did ya catch all of that??

Where’d my little boy go???

July 20, 2009 on 12:26 pm | In Joey, Sensory Processing Disorder | 3 Comments

Over the past few months, we’ve been noticing a change in Joey’s behavior. He’s become a very unhappy little boy that we can barely keep satisfied. He’s become more sensitive to certain sounds, he’s been having more mood swings.

I often wonder if it’s because I’m pregnant and he know’s there’s about to be a change??

Could it be related to his stomach problems caused by his colitis???

Or is there something else??

I’ve been reading more and more about Sensory Processing Disorder/ Sensory Intergration Dysfunction and the more I read, the more I wonder if that’s what Joey has.

Joey has obviously always been a sensory kiddo. He’s still has yet to eat anything more solid than pasta, oatmeal, ground beef, ect… He HATES having his teeth brushed, we actually can’t even get a tooth brush in his mouth anymore…

Although he’s become even more obsessive with licking anything he can get his hands on minus food…

He doesn’t do well around people he’s not familiar with, most of the time, he flips out…

I can’t wipe his nose or mouth without him having a fit….

If Leah lets out one of her little girly girl squeels, the sound of it makes Joey scream and cry…

I could go on and on……

Thankfully his school is on board with my thoughts and we’re in the process of having a professional come in and evaulate Joey and see what we can do to help him out.

It kills to me see him like this. The past two weeks have been VERY tough, our typical, happy Joey is gone and has been replaced by this whiny, cranky little boy.

I miss my old Joey, and I’d like to have him back.

Happy Saturday!

July 18, 2009 on 12:44 pm | In Joey, New Blog, Joey GI, Lymphocytic Colitis | No Comments

Just enjoying a nice quiet afternoon and wanted to post a quick update, still waiting to see if there’s a change with Joey’s tummy since we increased his medication, but thankfully he has an appointment on Friday! Phew!

Also, mental note to self, don’t give Leah chocolate pudding unless it’s directly before a bath!

I also wanted to share a friend of mine’s blog who also has a little boy with a little something extra, My Monkey Doodles!

more meds…

July 15, 2009 on 2:56 pm | In Joey, Joey GI, Lymphocytic Colitis | 1 Comment

I just heard back from Dr. Z, she’s increasing Joey’s Pentasa (stomach med) to 2 pills in the morning and one in the evening. She also wants to add immodium one to two times a day depending on how well it works.

We also go in to see Dr. Z next Friday so hopefully we’ll have some results by then!

Tummy woes…

July 15, 2009 on 11:46 am | In Joey, Joey GI, Lymphocytic Colitis | No Comments

Thankfully Joey finally got over whatever that nasty little bug was that he had. It took a good week but he’s finally back to his old self again!

Unfortunatly, he’s having a colitis flair-up and is tummy isn’t doing so hot. I just made a call into his GI doc to see if we can have his medication increased. He already has an appointment for next Friday but I don’t want to wait a little over a week to attempt to get this under control.

The poor kiddo’s rear end is raw and sore and I feel so bad for him. Even with diaper rash ointments and keeping him clean and dry, it’s still not enough.

Let’s hope that the GI doc calls me back soon…

What an evening!

July 6, 2009 on 11:42 am | In Joey, Joey's ENT, Craziness of our lives | 3 Comments

Poor Joey just wasn’t himself at all again yesterday. Refusing to eat or drink, spitting his medicine out, very lethargic. About 7pm, I got fed up and paged his ENT’s office. I told them the scoop and they suggested taking him to the ER.

I decided to also call his pediatrician’s office to see what they thought too. The doctor on call said the same thing.

After calling the doctors, the poor little guy was just laying in the middle of the floor not doing much of anything so off to CCMC we went.

While waiting in the waiting room to be called back, Joey drank almost 5 oz of milk to my surprise which helped to perk him up a little. We finally got called back and while waiting for someone to come in our room, wouldn’t you know it but Joey decided he was thirsty again! So he drank 6 oz of juice!

So thankfully he wasn’t dehydrated by the time the doctor came in so they didn’t want to do an IV for fluids, but the doctor said he has a really bad sinus infection so they gave him a shot of antibodics and sent us home.

We got home about 10:00pm and I was so exhausted, I went straight to bed! Leah was kind enough to sleep until almost 8:00 so at least I got to sleep more than usual since Joey slept in this morning until 11:15 when he typically wakes up at 6-7:00!

Poor kiddo woke up with an eye swollen shut and still not himself, but he’s eating oatmeal as I type, so hopefully he’s on the road to recovery and will be a little better this afternoon!

Hippotherapy article

July 5, 2009 on 12:29 pm | In Down syndrome, Articles, Hippotherapy | 1 Comment

For love of Lindsey
Sunday, July 5, 2009

By MELISSA BROOKS
Times Herald Staff

Since the time her daughter, Lindsey was two, Chris Hanebury knew there was something special about the 27 acres of land tucked away in Evansburg State Park, a place gentle horses call their home and families gather.

Nearly five years since Lindsey passed away from leukemia, just before her 20th birthday, Hanebury continues to serve the organization her daughter gained so much from for most of her short life.

Lindsey was born with Down syndrome in 1984. Her grandfather, Hanebury’s dad, had grown up with a horse and encouraged the family to check into hippotherapy as a way to help improve Lindsey’s low muscle tone.

Sebastian Riding Associates, a nonprofit organization operating from Evansburg State Park in Collegeville that specializes in therapeutic horseback riding, provides equine therapy to children and adults with a variety of physical, mental and emotional disabilities.

At age 2 Lindsey began hippotherapy, which Hanebury explained “doesn’t actually teach riding skills.

“It’s a therapy session,” she said. “The therapist is manipulating the student all while the horse is moving, to work on balance, core strength.

“This was great for her, because she loved the horses … so she was receiving the benefit of the therapy, and she didn’t even know she was having therapy because it was enjoyable for her.”

Hanebury, who grew up in Jenkintown and lives in North Wales with her husband, Steve, and their two grown children, knew from the start that Sebastian was a place where a child born with limitations could feel confident, unstoppable.

She attended functions over the years and donated items for fundraisers. But it wasn’t until Lindsey was about 15 and horse crazy when Hanebury became more “present” at Sebastian.

Lindsey had transitioned from a hippotherapy student to a therapeutic riding student with an instructor to teach her riding skills. Hanebury supported her daughter’s passion, volunteering more and more, helping out with shows Sebastian’s 4-H Club put on.

“With (Lindsey) riding and my other kids coming with us to take her (to lessons), it awakened the inner horse lover in all of us,” she said. “Everyone started developing an interest in it. Continue reading Hippotherapy article…

SEC probes Sequenom test

July 5, 2009 on 12:25 pm | In Down syndrome, Articles, pre-natal testing, Sequenom | No Comments

Again, I have mixed feelings about this new prenatal test and it appears to not be as accurate as first thought.

Sequenom says SEC probes Down Syndrome test
Tue Jun 30, 2009 5:36pm EDT

(Reuters) - Sequenom Inc said the U.S. Securities and Exchange Commission has initiated an investigation related to the company’s Down Syndrome test SEQureDx, sending its shares down 8 percent.

In April, the San Diego-based company had delayed launch of the test, citing mishandling of research and development test data and results by an employee.

Sequenom said the company intends to cooperate completely with the regulator’s investigation and the company’s internal investigation was ongoing.

Shares of Sequenom were down 8 percent at $3.60 after the bell. They closed at $3.91 Tuesday on Nasdaq.

(Reporting by Vidya L Nathan in Bangalore; Editing by Vinu Pilakkott)

Poor Joe-Joe

July 5, 2009 on 10:36 am | In Medical, Joey, Joey's ENT, Craziness of our lives | 1 Comment

He’s sick again… actually he’s been sick for almost the past week. I took him to the pediatrician Wednesday or Thursday (can’t remember which) and Dr. B said he had a very red throat. He did a strep culture but it came up negative (thank goodness). Joey kept spiking fevers of at least 102, he did great Friday afternoon and most of the day yesterday but is awful today.

His ears were clear at the pedi and I hope and pray they stay that way. Hopefully his new tubes will help!

This whole time, he’s pretty much refused most food and liquids but I’ve gotten enough in him to keep him from getting dehydrated. Everytime we go to give him his antibodics, tylenol or cold medicine, so flips out and spits it out everywhere. Thankfully I was able to get tylenol supositories from the pharmacy so at least I’m able to keep his temp down (most of the time).

Now he has nasty colored snot coming from his nose but thankfully his lungs still sound good. No rattling…

He’s been going into fits where he’s halfway fine one minute then screaming and slamming his head onto the floor the next. This is so mentally exhausting…

27 MONTHS!

July 3, 2009 on 12:03 pm | In Pregnancy- Aiden | 1 Comment

Wow, have I been pregnant A LOT in the past 4 years…

9 months with Joey
2 months with Kiera
9 months with Leah
7 months with Aiden (so far)

Which adds up to a grand total of 27 out of the past 48 months that I’ve been pregnant! That’s a lot of stretch marks, trips to the bathroom, kicks from all of my little baby beans, back pain, just a lot of pregnancy!

2 more months to go!!!

Chuck E Cheese playdate!

July 2, 2009 on 1:48 pm | In Photos, Joey, Playdates | 3 Comments

On Monday, Joey and I had a mommy-son trip to Chuck E Cheese to see Joey’s buddy Jake and his brother. Joey had a blast mostly running around, but he did have fun playing Skee-Ball although he learned from another little boy how to cheat!

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New do!

July 2, 2009 on 1:30 pm | In Photos, Hair, Pregnancy- Aiden | 1 Comment

A few weeks ago, I went to a cut-a-thon at a local hair salon where the proceeds went to the CDSC. So with the hot summer approaching very fast, I cut my hair even shorter! So here’s my new “do” and my latest tummy shot!

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Fun with fingerpaint!

July 2, 2009 on 1:27 pm | In Photos, Crafts, Leah | No Comments

The other day, I pulled out the fingerpaint and Leah had a BLAST!

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Giveaways Galore!

July 2, 2009 on 1:15 pm | In Contests | No Comments

5 Minutes For Mom is giving away a Dyson DC25 Vaccum Cleaner! Do you know how much I could use that thing?! Currently, I have a little Dirt Devil that does fairly good cleaning the floors but I could really use something with a little more power!

AND I know the kiddos (especially Joey) would really like a Step 2 Sand and Water Table Giveaway from the lovely ladies at 5 Minutes For Special Needs! Joey’s teacher has something similar to this in her classroom and he LOVES it!

Leah would love for me to paint her fingernails with Piggy Paint! A safe nail polish for kiddos! Over at 5 Minutes for Giveaways, they’re giving away a $20 gift certificate!

Another great giveaway from 5 Minutes for Giveaways, the folks behind Beef. It’s What’s For Dinner, are here to offer you the perfect backyard grilling package worth over $250.00!

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