Gobble! Gobble! Gobble!

I hope that everyone had a nice holiday!
In preparation for Thanksgiving, Isabella and I made sugar cookies.

We wore our matching aprons.  I think I'm going to have to make Isabella a new apron because this one is getting a little small.

 

We used food coloring and made the cookie dough different colors then rolled them together.

 

We cut out turkeys, acorns and leaves.

 

 

Isabella was excited for Thanksgiving.  She was happy that Mommy, Daddy and Grammy would all be home together for the day.  I made raspberry & cheese danishes for breakfast.  They are yummy!

 

 

On Friday, I took Isabella to a tea house for her birthday.  It was so much fun!  She and I both really enjoyed ourselves.

 

 

The ladies that work there gave Isabella a fancy hat to wear.  She, of coarse, loved it. 

 

I wasn't sure if Isabella would drink tea or not.  She ordered mint tea (yuck!!!) and had one cup.  I had the house blend and it was very good.  Isabella has found a new appreciation for sugar cubes.

 

 

 

 

When our main plates were brought out, all the ladies there, including the other customers, all sang happy birthday to Isabella.  She was thrilled to tell them all she was 6.

 

 

We will definitely be going back.  It was wonderful!

When we got home, Isabella was allowed to open her gifts from Grammy a day early.

 

 

 

Lily helped.

 

On Tuesday we went to Longwood Gardens.  They now have the Christmas lights up.

 

 

This year's theme is stars.  Last year it was gingerbread.

 

My Sweet Babies!!!

 

 

Isabella and I likes the red lily's.

 

Lily thought this big Christmas tree was amazing!

 

We are so busy next week!  We have 4 appointments, Raymond's regular 5 therapy sessions and Lily's 1 therapy session.  Also, Monday night I will be the Barnes & Noble in Lancaster at the gift wrapping table.  I am volunteering for the group Celebrate Down Syndrome.  Hopefully it brings a lot of awareness to them.  The following Monday is Raymond's surgery.  They've added tubes, ear cleaning and tissue removal from his ears to Raymond's surgery that day.  Busy!  Busy!  Busy!

 

I'm not going to put up any therapy updates from this week.  Truthfully, I just don't feel like it.  Raymond had good sessions with everyone except his physical therapist.  I think he just needs to get to know her a little better.  I'll make sure I put something specific up next week.  

 

Until Next Time!

Lots of Love, 

Tammy Duckworth

Unless you live in or around Illinois, you may never have heard the name Tammy Duckworth.

This year, she ran for congress to represent Illinois' 8th district.

She and I don't necessarily share all the same political views.  However, I do think she is truly inspirational.  Here is a full length picture of Congress Woman Duckworth -

 

 

Duckworth is an Iraq War veteran, who served in the U.S. Army as a helicopter pilot.  She suffered severe combat wounds, loosing both her legs and damaging her right arm.  Despite that, look at what's she's done with her life.  Instead of sitting around feeling sorry for herself, she has charged full speed ahead, showing the world her ability, not her disability.  That's pretty amazing.  Tammy Duckworth is also the first disabled woman to be elected to the House of Representatives and the first congress member born in Thailand.  I think she is an INCREDIBLE role model to both girls and boys.  She also does wonderful things for our active serve men and vetrans.  That's why I decided to share some information about her on this blog.

You can learn more about her by visiting http://www.tammyduckworth.com/.

 

Until Next Time!

Lots of Love, 

DS Article

This is fascinating!  It could lead to some amazing things!

Extra Chromosome 21 Removed From Down Syndrome Cell Line

November 9, 2012

University of Washington scientists have succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down's syndrome. In Down syndrome, the body's cells contain three copies of chromosome 21, rather than the usual pair.

A triplicate of any chromosome is a serious genetic abnormality called a trisomy. Trisomies account for almost one-quarter of pregnancy loss from spontaneous miscarriages, according to the research team. Besides Down syndrome (trisomy 21), some other human trisomies are extra Y or X chromosomes, and Edwards syndrome (trisomy 18) and Patau syndrome (trisomy 13), both of which have extremely high newborn fatality rates.

In their report appearing in the Nov. 2 edition of Cell Stem Cell, a team led by Dr. Li B. Li of the UW Department of Medicine described how they corrected trisomy 21 in human cell lines they grew in the lab. The senior scientists on the project were gene therapy researchers Dr. David W. Russell, professor of medicine and biochemistry, and Dr. Thalia Papayannopoulou, professor of medicine.

The targeted removal of a human trisomy, they noted, could have both clinical and research applications. In live births, Down syndrome is the most frequent trisomy. The condition has characteristic eye, facial and hand features, and can cause many medical problems, including heart defects, impaired intellect, premature aging and dementia, and certain forms of leukemia, a type of blood cancer.

This is Dr. David Russell, University of Washington hematology and genetics researcher.

(Photo Credit: University of Washington )

 

"We are certainly not proposing that the method we describe would lead to a treatment for Down syndrome," Russell said. "What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders that accompany Down syndrome."

For example, he said, someday Down syndrome leukemia patients might have stem cells derived their own cells, and have the trisomy corrected in these lab-cultured cells. They could then receive a transplant of their own stem cells – minus the extra chromosome – or healthy blood cells created from their fixed stem cells and that therefore don't promote leukemia, as part of their cancer care.

He added that the ability to generate stem cells with and without trisomy 21 from the same person could lead to better understanding of how problems tied to Down's syndrome originate. The cell lines would be genetically identical, except for the extra chromosome. Researcher could contrast, for example how the two cell lines formed brain nerve cells, to learn the effects of trisomy 21 on neuron development, which might offer insights into the lifelong cognitive impairments and adulthood mental decline of Down syndrome.

Similar comparative approaches could seek the underpinnings of untimely aging or defective heart tissue in this genetic condition.

The formation of trisomies is also a problem in regenerative medicine research using stem cells. Russell and his team observed that their approach could also be used to revert the unwanted trisomies that often arise in creating stem cell cultures.

Figuring out the exact techniques for removing the extra chromosome was tricky, Russell said, but his colleague Li worked hard to solve several challenges during his first attempts at deriving the engineered cell lines. "Dr. Li's achievement was a tour de force," Russell said.

The researchers used an adeno-associated virus as a vehicle to deliver a foreign gene called TKNEO into a particular spot on chromosome 21, precisely within a gene called APP, which sits on the long arm of the chromosome. The TKNEO transgene was chosen because of its predicted response to positive and negative selection in specific laboratory growth mediums. When grown in conditions that selected against TKNEO, the most common reason for cells to survive was the spontaneous loss of the chromosome 21 harboring the transferred gene.

Other survival tactics were point mutations, which are single, tiny alterations in DNA base pairs; gene silencing, which meant TKNEO was "turned off" by the cell; or deletion of the TKNEO.

Russell explained a key advantage of this technique for getting rid of the entire extra chromosome: Once it was gone, nothing was left behind. "Gene therapy researchers have to be careful that their approaches do not cause gene toxicity," he said.

This means, for example, that removal of a chromosome must not break or rearrange the remaining genetic code. This method shouldn't do that."

Dr. Li Li at the University of Washington developed methods for removing the extra chromosome from cultured cells with the Down syndrome mutation.

(Photo Credit: University of Washington )

 

Until Next Time!

Lots of Love,

HAPPY BIRTHDAY!!!

HAPPY 6th BIRTHDAY ISABELLA!!!

MOMMY, DADDY, RAYMOND AND LILY LOVE YOU SOOOO MUCH!!!

 

We bought Isabella an Ice Cream Cake but I saw these Muppet Cupcakes and knew Isabella would love them!

 

I LOVE THESE!!!

Until Next Time!

Lots of Love,

Princeton Down Syndrome Conference

On Sunday, I attended the 6th Annual Down Syndrome Conference at Princeton University.

This was the first time I had ever been to the campus.

 

 

There was a lot of beautiful architecture.

 

The one thing about this conference that's great in my opinion, is that Princeton puts on a carnival for the kids with Down Syndrome.  The parent must pre-register the child and once that is finalized, each child is assigned a "buddy".  Princeton's Rugby team and other students volunteer their time to be buddies for the day.  Three days before the conference, the buddy calls the home of the child with Down Syndrome to talk to the parents to learn a little bit more about the child.  They then have the opportunity to speak with the child on the phone if possible.  The day of the conference there is a 30 minute drop-off time where the child and buddy get to know each other in person with the child's parents before heading off.  Each child wears a name tag on the front and back of their shirt, that says (for example), "Sarah with Buddy Michelle", so everyone knows which buddy belongs to which child.  It's nice that parents can bring their children.  This allows many more couples to come as opposed to one parent being at home watching the children.  

 

****

 

The opening speaker at the conference was Brad Hennefer and his family.  Brad is a 23 year old young man (24 next month as he pointed out) that happens to also have Down Syndrome.  Brad grew up in Cherry Hill, New Jersey.  Brad was a member of his high school varsity basketball and golf teams.  With the support of friends, family and community members, The Brad Hennefer Golf For Life Foundation was born.  The goal of the foundation is to facilitate a network of regional and national golf instruction programs, clinics and competitions exclusively for individuals who have Down Syndrome.  They are collaborating with the National Down Syndrome Congress (NDSC) and the Philadelphia Section of the Professional Golfers' Association of America (PGA) to make this possible.

 

 

This is a great video to watch were Brad was featured as Comcast Sports MVP of the month.  His parents actually showed this video to introduce Brad to people attending the conference that might not have known who Brad was beforehand. One of Brad's friends and teammates featured in this video, Drew Berlinsky, actually spoke this year at the National Down Syndrome Conference.  Think about how incredible that is.  Here is a young man, no other connections to Down Syndrome other then his high school friend, Brad.  They graduated together almost 6 years ago, still remain friends, and he traveled to a Down Syndrome Conference to speak about his friend.  That is an amazing impact from one child playing on a basketball team! 

Brad still has many of his varsity basketball and golf teammates as friends. 

 

Brad's parents spoke about what it was like for their family raising a child with Down Syndrome.  Brad has one older brother, Bobby, who is a PGA Golf Professional.  The Hennefer's gave their top 10 pieces of advice for raising a child with Down Syndrome.  They feel that sports and inclusive education really made Brad the young man he is today.  Brad's mother said they tried many sports before they were able to find one that worked for him but they never gave up.  Being apart of a team was something that was not only beneficial for Brad but his teammates as well.  Brad's father spoke with Cherry Hill's basketball coach to see if Brad could be team manager or participate during practices.  Normally there are only 14 spots available for a varsity basketball team.  Brad's father didn't want a deserving player to be denied access to the team because of the "kid with Down Syndrome" and have animosity.  So he, along with support of the basketball coach, petitioned the school district to allot a special 15th spot just for Brad.  The district allowed the addition of the 15th spot.  However, during practice, the coach saw just how good Brad was at 3-point shots.  Brad, and Brad alone, earned his place along side his teammates in actual varsity basketball games.  

****
The first session that I attended had three different speakers/organizations.  The first was GiGi's Playhouse.  As many of you know, I have been a huge supporter of GiGi's Playhouse ever since I first found out about them.  I must have told Chris 1,000 times how I would love to open one in Pennsylvania.  (I found out you only need to raise $10,000 to get started...hmmm...project???)  Something new that GiGi's Playhouse in New York is working on is it's literacy program.  Click here to learn a little more about that.  The program sounds amazing and they have excellent people working on it.  Britt Sady, Executive Director of GiGi's Playhouse in NYC and Jordana Mendelson, Education Director of GiGi's Playhouse in NYC were both in attendance.
 I was happy to see GiGi's Playhouse there and to get on the mailing list.

The second speaker, Troy Memis, was with the organization TOPSoccer.  TOPSoccer is a community-based training and team placement program for young athletes with special needs.  The TOPSoccer program is designed and administered by US Youth Soccer and its volunteer TOPSoccer committee provides meaningful learning, development and physical participation opportunities to these young athletes through the game of soccer.  It really seems like a great program.  They are looking for people to start news leagues as well.

The third and final speaker was Terri Wilson, Camp Director of Camp Sun N' Fun.  This is a camp for children and adults with disabilities based in Williamstown, New Jersey.  They offer a one week camp, two week camp and day camp.  It seems like a place where kids can have a really great, judgement-free time.

****
The final session I attended was about inclusive education.  Inclusive education and mainstreaming are NOT the same thing.

Inclusive Education - Inclusion is an educational process by which all students, including those with disabilities, are educated together for the majority of the school day.  The practice of welcoming, valuing, empowering and supporting diverse academic and social learning among students of all abilities is called inclusive education.

Mainstreaming is an educational practice where a student from a separate special education class visits the regular classroom for specific, usually non-academic, subjects.

Definitions from thinkquest.org

 

This session also had three speakers.  All three speakers were good, but one in particular was very impressive.  Her name is Paula Lieb, Esq.  She is the President and CEO of the New Jersey Coalition for Inclusive Education.  She was such a wealth of knowledge.  She is the person that when Raymond is older, I want to pick her brain.  She was awesome!  I received a lot of good information about IEP's (Individualized Education Plan's) and making the most of them.  The third speaker, Hillary Freeman, Esq., spoke about some "red flags" to identify from school districts, as well as, the IEP's.  Freeman's brother has a severe form of Autism.  Her law firm specializes in and advocates for people with disabilities across the lifespan.  I skipped over the first speaker, Lin Rubright.  She is the mother of 6 girls.  Her oldest and youngest daughters both have Down Syndrome.  She is the Executive Director of the Anna Foundation for Inclusive Education.  She was very knowledgeable also.  I wanted to ask her if her youngest daughter was biological or if she was adopted.  Considering that it's really none of my business, I didn't ask, but I was curious. 

 

All in all, I really enjoyed the conference and I will go back next year if it is offered.

Thank you so much to Princeton University for hosting this event!!!

 

Until Next Time!

Lots of Love,

Mark and Spencer's 2012 Christmas Ad

Courtesy of TheHuffingtonPost.com

Four-year-old Seb White from the U.K. debuted as the first model with Down syndrome in a British television commercial for a major brand on Wednesday. He appears in Marks and Spencer's 2012 Christmas ad -- a highly anticipated annual campaign.



 



According to The Sun, Seb's mother Caroline had noticed a lack of commercial models with disabilities and wanted their family to remedy that situation. After a number of "brutal knockbacks," White posted a photo of her son on Marks and Spencer's Facebook page requesting that the department store consider him as a potential model.

"Almost instantly there were comments from complete strangers saying they thought using Seb as a model was a brilliant idea," White told The Sun.

Marks and Spencer contacted the family to book Seb as a model in their Christmas catalogue. After a job well done, they asked Seb to participate in their TV commercial too.
 

 

“Our initial involvement with Seb was due to the overwhelming response to Caroline’s post on our Facebook page... However, he won his place in our TV ad thanks to the natural charm and magical personality he showed on set at our magazine shoot," Steve Sharp, executive director of marketing of Marks and Spencer told This Is Bath.

Seb is thrilled to see himself on TV, the Daily Mail reports, and his mom hopes his presence will also help normalize his disability. "If Seb appearing in a TV campaign raises awareness of Down's, ­challenges stereotypes and helps other parents feel better about ­having a child with it, I will be very happy," she told the Mail.

Seb is at the end of the commercial running and jumping.
Very exciting!

Until Next Time!
Lots of Love,

 



World Prematurity Day

This post is to honor the more than 1 million babies worldwide who died this year because they were born too soon, and the 14 million more who struggle to survive. Today is World Prematurity Day and The March of Dimes is trying focus everyone’s attention on the serious problem of premature birth.

 

Premature birth kills 1 baby every 30 seconds.

 

I thank God everyday that Raymond was not part of that statistic.

 

 

Until Next Time!

Lots of Love,

Weekly Therapy Update & More

"Raymond needed some verbal prompting in order to follow directions.  Raymond needed some prompting in order to attend to and participate in teacher directed activity."

-Beth, Special Instruction Therapist

11/13/2012

"Raymond had a good session with good attention, following directions, and cooperation.  He used a spoon to scoop beans to dump/fill for pronation/supination as well as pincer grasp to pick them up.  Raymond picked out socks and used both hands to put them on.  He stacked and nested blocks several times."

-Becky, Occupational Therapist

11/14/2012

 

 

 " Raymond verbalized "open" two times today.  He was able to select named items from 2 with more consistency.  Raymond filled in some actions - sit - drive.  Words to songs verbally continued to be practiced today.  Practiced answering yes/no to questions.  "M" sound appears to be developing.  Raymond can make the sound - attempted to say moo - me - today.  Raymond had an excellent session!  We played in his bedroom.  He attended to activities for 45 minutes with intermittent prompts."

-Allison, Speech Therapist

11/15/2012

 

 

Lily's Update:

"We had a snowman themed day.  Lily started by reading Frosty.  When prompted, Lily was able to point out common objects on the pages.  Lily completed arts and crafts to target requesting and imitating.  Lily only required 1-2 models before consistently using target words."

-Tara, Speech Therapist

11/14/2012

 

 

Raymond had his appointment with the surgeon on Wednesday about having his gallbladder removed.  I had never met this surgeon before but I really liked her and she was good with Raymond.  She agreed 100% that Raymond's gallbladder coming out is the best thing for him.  So after almost a year of pushing for this, Raymond will have his gallbladder removed on December 10.  So everyone pray that he stays healthy and can have it done as scheduled.  It will be tough for him but we know he'll be brave like every other time he's had surgery.

Last night we had a parent-teacher conference with Isabella's kindergarten teacher.  Isabella really likes her and it's easy to see why.  She's a very nice woman.  Some of the things she told us about Isabella is that she is kind, well-liked, has an eye for detail and extremely bright.  Mrs. Hodik said she was reading a book to the class, that she has used for years, and Isabella pointed something out in the book that she had never noticed and that none of her other students have ever noticed.  She was very impressed.  Mrs. Hodnik also said that she is looking forward to following Isabella's academic future because she is just "so bright".  As we suspected, she's a genius! : )

Until Next Time!

Lots of Love,



Children's Grief Awareness Day

The website for Children's Grief Awareness Day has an abundance of resources for families that are going through the devastation of a death.  Today, November 15, 2012, is Children's Grief Awareness Day.  If you know a family that is experiencing a loss, please refer them to this website - you can click on the picture below to go right to there.

Taken from www.childrensgriefawarenessday.org:

 

Children and teens who have had a loved one die often feel alone in their grief, like nobody understands what they're going through. Experiencing a death can be overwhelming for anyone, but it is especially difficult for those so young.

 

Grieving children need support. And the first step in that support is for the rest of us to become more aware of what these kids are going through.

 

Children's Grief Awareness Day is designed to help us all become more aware of the needs of grieving children and of the benefits that they obtain through the support of others.

 

Observed on the third Thursday of every November (one week before the U.S. holiday of Thanksgiving), Children's Grief Awareness Day is intentionally set in the holiday season, often a particularly difficult time for those grieving the loss of a loved one.

 

In 2012, Children's Grief Awareness Day is November 15.

 

Children's Grief Awareness Day is an opportunity for all of us to raise awareness of the painful impact that the death of a loved one has in the life of a child. An opportunity for all of us to recognize and support the millions of grieving children across the nation — the thousands of grieving children right in our own communities — the grieving children we know and see in our daily lives.

Children's Grief Awareness Day is an opportunity to make sure that grieving children receive the support they need.

 

Until Next Time!

Lots of Love,