Thursday, September 29, 2011

Forget Me Not Friday: Josiah & Other Children

Did you remember?  Did you remember that this is the day we focus on the orphans overseas who are forced to live out their days in an institution all because they are deemed "less than worthy"? All because they have something that makes them "different" such as Down syndrome, cerebral palsy, Apert's syndrome, etc?

September is drawing to a close, which means I will soon be turning my change into a dollars for Francine.

October's Change-For-A-Change will be Josiah.



Here is a bit of background on little Josiah:





Boy, Born June 22, 2004
I HAVE BEEN SENT TO THE INSTITUTION!

Josiah is SO handsome!   Olive skin, and dark hair with beautiful deep brown eyes.
Josiah is all boy!   Very active and doing well. He was born with an additional chord to the left ventricle, and has a functional systolic murmur.   But you'd never know it!  
From an adoptive family who visited with him in May 2010: "This cutie pie had just woken up from his nap, so he was not feeling over smiley.  He was very pleasant and followed the commands of his caretaker.  He appropriately pointed to his ears, eyes, nose, bottom and hands after she asked him to show her where each part was.  He loves to throw the ball back and forth with someone. He is well developed and proportional.  He is a big boy."
From an adoptive family who visited with him in April 2011:    "Josiah was transferred to his current place in October, 2010.  He has lost a noticeable amount of weight. He is desperate for personal attention and stimulation.  The caretakers at the orphanage really do not know what to do with him. He is very outgoing and has a huge smile for anyone that is willing to give him the time of day. He gets along well with the other children in the group and listens well to his caretakers.  He walks and runs, and plays, and feeds himself, but he seems to have slipped into survival mode here and is regressing fast.  I feel VERY STRONGLY that he needs out of this place!"



How can your heart not break into pieces when you see his sweet face and know of the horrors he must face?  He is already in an institution!  An institution where he may be medicated and tied to the crib.  An institution where only basic needs such as small amounts of food are provided.  He needs care.  He needs love.  He needs a family! 

Guess what? He does have a family, but they have not been revealed yet.  Once I am able to release the information, I will be sure to share it with you.  Until then, only a little over $1,700 is in his grant. So much more is needed.  So please, consider donating your extra change towards this little boy's adoption.

You can make a difference!  If all of my followers donated $10 during the month of October, $1,130 would be raised.  That is a huge chunk of change!  If you cannot donate, then please spread the word.  

For more background info on these children and orphanages, click here.

Ellie says, "please see what these other families are up to!".


Other updates:
The Smith Family has traveled to Eastern Europe [EE] and met their little girls Phoebe and Daria.
The Taylor Family arrived in EE earlier this week and are waiting to meet Andriy (Jadon).

The Eubanks family still need significant funds to bring home Shawna and Lindsey.
The Keizer Family is raising funds to bring home Mary (Rush).
The Quinn family is sponsoring an iPad give away for Donna (Autumn)
The Sphak family is still selling "orphan bracelets" to raise money for the adoption of Shannon.


Finally, a dear wonderful of follower (Thanks Sue!) brought the following blog to my attention.  If you look at the banner at the top of the blog. . .all the way to the left--TABITHA!!!!!  No, she does not have a family.  Yes, she is still available.  Yes, she is the most beautiful child ever next to my darling Ellie. This fabulous group of young woman and striving to make a change.




If you would like to have a child featured on Forget-Me-Not Fridays, please contact me at thechroniclesofelliebelliebear@yahoo.com



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Wednesday, September 28, 2011

Wordless Wednesday: My Other Babies

Tama: I'm Ready for Halloween

The Alpha


The Princess Puppy Paw-Paws



Don't forget the DSACT Buddy Walk is on Sunday October 23, 2011.  We will be walking as Ellie Bear's Entourage.  More details here.
















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Tuesday, September 27, 2011

Zoom Zoom Beep Beep!-A New Sign

One of the interesting aspects about Ellie's communication with ASL [American Sign Language] is that she will mimic signs, but she may not use them appropriately.  What I mean is that she will sit at the dinner table and sign every single sign she knows until she gets what she wants.  She is clever in that she knows that if she signs, she gets something.  However, she may sign cracker and get angry when I give her a cracker.  She may sign berry and get frustrated when I give her a strawberry or raspberry.  Yes, she knows signs, but she does not always associate the sign with the correct word.

It is a process that is at times very challenging and nerve wracking.  It is learning new 2nd language for both of us. Communication is both receptive and expressive. Receptive = understanding what is said and expressive = saying what she means.

When Ellie "connects-the-dots" there is a huge celebration.  It is a huge triumph and there is a big happy dance.  Until two days ago, the only signs that Ellie would use consistently without prompting and for the correct object were "Daddy", "dog", and "book".  Yes, daddy trumps me.

As Ellie and I walked outside from an indoor play scape (hey, we are still in the triple digits so outdoors is hot hot hot!), she signed CAR and made the motor noise.  This is a HUGE HUGE HUGE step in communication.


Sign for Car:  Courtesy of www.babysignlanguage.com
Visit the link for more signs, flashcards, and charts


1. Car is a new sign
2. Ellie used the sign appropriately, unprompted
3. The Bear-Bear made a noise, a sound to go with her sign

Which leave me to say: " Super Bear!  Ta-da dadada!  Super Bear!  Ta-da dada! "

Here is Andrew making the car noise.  Of course Sophie Dog must be involved as well.

Ellie's Car uses MegaBlocks for fuel


The above photo has nothing to do with this post. . . Sleeping baby-toddlers are precious and I would LOVE to sleep this good.


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Sunday, September 25, 2011

A Blue Rose Behind Blue Eyes

I once read this poem on another wonderful woman's blog (I cannot recall which blog right now, but I remember the story well).  It brought tears to my eyes and I would like to share it with you.

Behind These Blue Eyes I See: Curiosity



A Blue Rose 
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

Behind These Blue Eyes I See: Mischief


It was obvious now, he was mentally challenged [intellectual disability] and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

Behind These Blue Eyes I See: Concentration and Great Determination


I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.



Behind These Blue Eyes I See: Facing Challenges Head On and Motivation

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

Behind These Blue Eyes I See: Innocence Coupled With Spunk


She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

Behind These Blue Eyes I See: Pure Love and Pure Joy
May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

Ellie is My Blue Rose.  Who is yours?

Note: The Blue Rose is also an old Chinese Folktale.



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Friday, September 23, 2011

A Burden to Marriages, Siblings, and Society

I have read in response to various articles and on social forums that having a child with Down syndrome [Ds] is a burden to society.  That is causes a strain and increased divorce rate on marriages.  That is negatively impacts the quality of life for current children and places a burden on them.  That these people with Ds are a burden to society.  A strain.  That they are unworthy.

I love.  I am loved.  I am good.  I am valued.  I have worth.  I have Down syndrome.


In light of the new, earlier prenatal blood test for Down syndrome these three studies were not published a moment too soon. (please refer to Defective: Designer Genes and Designer Babies)  I have taken the liberty of summarizing each of them for you so that you do not need to sift through the mambo jambo of Likert scales and statistical significance.

The American Journal of Medical Genetics released the results of 3 studies (cross-cultural qualitative and quantitative studies across six states in various regions of the Unites States).

I improve and strengthen marriages.  I am love and make my parents proud.


Mother & Father Perceptions on Raising a Child with Ds

  • Most parents express their love and pride for their child with Ds' accomplishments
  • Parents report that they are more tolerant, patient, accepting, kind, appreciative, and empathetic
  • Parents report that their other children  (the siblings) are more caring and sensitive
  • Parents report a positive change in their attitudes towards life and what is really important in life
  • Laughter, joy, and celebration are a huge part of their family experience
  • Parents possess new found acceptance and respect for people
  • Parents are LESS likely to get divorced than their counterparts who do NOT have a child with Ds (also documented in 2007 by Urbano and Hodapp)
  • Only a measly 11% reported increased marital discord due to Ds
  • Only 4 % express regret in having the child.  Of that 4%, the majority had older children with Ds.  It is hypothesized in the study that the regret could be due to the lack of social, education, and supportive services back then.
  • About 50% of parents found help and support from their local Ds Associations




I teach acceptance and patience.  I am love and joy.

Sibling Perceptions of Having a Brother or Sister with Ds


  • Majority of sibling of all ages expressed profound love and pride for their brother or sister with Ds.
  • Most of the sibling believed that they are better people because of their brother or sister with Ds.
  • As the participants matured into the teenage years, they reported feeling better able to identify themselves specifically because their sibling has Ds in that they have learned important life lessons.
  • They report feeling that they have a deeper appreciation of all people.
  • Most siblings are very comfortable with their brother or sister with Ds while only a few are said to be embarrassed in public.
  • Many siblings enjoy helping their brother or sister with Ds learn new things & achieve new tasks.
  • A small minority of siblings expressed feeling sorry for the sibling with Ds-especially those who had complex health issues.
  • A minority of siblings report feeling as though their parents gave them more choirs or responsibilities than the sibling with Ds.  Yet the majority felt comfortable with increased responsibilities and intend to stay involved in their siblings life as they both age.
  • A minority of sibling report that they did not get enough or disproportionate amount of attention from their parents.  That was mostly seen among those who were older than the sibling with Ds and those who were not yet in their teenage years.



I contribute to society. I am valuable. I am worthy..  I am LIFE.

Self-Perceptions on Having Ds (participates are 12+ years-old with Ds, mean age of 23.4 years)

  • ". . . these finding [previous studies] suggest that with regard to the domains of academic competence, physical abilities, and social acceptance, young persons with DS have very positive views of themselves, which became even more positive with age..." (pg. 2360).
  • Majority of participants states that they are happy with their lives, their appearance, and who they are (WOW! How many of you are happy with all of those aspects?)
  • Their functional skills are NOT related to the participant's happiness or sense of fulfillment.
  • They report that they love their family including siblings.
  • In response to what they want health care providers to know:
    • They have good lives and are proud of who they are.
    • They ask to be valued: "do not label us. People with DS do lots of things."; "I would like parents to value a person with Ds"
    • They have hopes and dreams: getting married, living in an apartment, playing sports.
    • Other participants talked about their close friendships.
    • A few wanted to "get rid of the extra chromosome" and states that they did not like Down syndrome.
  • In response on what to tell new parents: 
    • there will be love between the baby and the parents and that their own lives are good
    • That the baby will love them. 
    • Also that the parents do not need to worry.  
    • Responses such as "If everyone was as happy as me, that would be great"; "I am have friends who care about and love me"; "It is okay to have special needs"
    • treat the child like a 'normal child'. As well as the baby might be sick a lot and need a doctor.
    • Many want parents to have patience because some areas are harder for them to learn.
    • Some pointed out the similarities between those who have Ds and those who are "typical".
    • Some expressed feeling sad or wanting to be more like their siblings--this small percentage was seen among those just out of high school.

I am a future friend, classmate, co-worker, wife, daughter-in-law.
Life is precious.

It is my hope that health care providers use this information to provide accurate and up-to-date information about not only Down syndrome itself, but also about family dynamics when working with expectant families or with a family who has an infant that is newly diagnosed.


This is Part 1 of a 2 or 3 part series.
Part 2 will be a personal interview with my Dad who has a sister with Ds.  I have not mentioned this to or cleared this with my father yet. . . Dad, would you mind helping your daughter out with a future blog post?


References:
Skotko B., Levine S., and Goldstein R. Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers (2011, Oct). American Journal of Medical Genetics. vol 155, issue 10, 2335-2347


Skotko B., Levine S., and Goldstein R. Having a Brother or Sister With Down Syndrome: Perspective From Siblings (2011, Oct). American Journal of Medical Genetics. vol 155, issue 10, 2348-2359


Skotko B., Levine S., and Goldstein R. Self-Perceptions from People with Down Syndrome (2011, Oct). American Journal of Medical Genetics. vol 155, issue 10, 2360-2369

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Wednesday, September 21, 2011

The Orphan Bracelet

**Since I writing this post yesterday, the Sphak blog has gone private and requires an invitation to join.  There are many people in this world who do not support the adoption of children with special needs. It is sad, but true.  Many of my friends' blogs have gone private due to horrendous, harassing comments and due to photo stealing for nefarious purposes.  This saddens me greatly and I fear that little Shannon's adoption blog has gone private for the reasons listed above.  I have changed all links in this blog to go directly to Shannon's Reese's Rainbow page.  If you have donated $10 or more, (by clicking on Shannon's name to go to the Reese's Rainbow website ), please let me know via email at ***

anna (dot) theurer (at) gmail (dot) com

Please include your name, mailing address, and the number of bracelets and I will then forward this information to the Sphak family.


Yes, I know.  I know. I completely missed last week and I apologize for that.  Yet, I am back this week in full force.  Forget-Me-Not Fridays!

The Orphan Bracelets


I have recently come to the conclusion that many of my dear readers share an interest in Reece's Rainbow and in many of the blogs that I follow.  This is both fabulous and problematic.  Why, you ask?   Many of us have a bleeding heart for these children living suffering in these orphanages over in Eastern Europe where children with Ds, CP, Aperts, etc. are deemed as "less than worthy". All of us are doing our best to help support these forever families, but we are all tapped out financially.    I get it. We need fresh meat.  This is why it is important to spread the word and share blog posts and whatnot.  We need more traffic.  New readers who need to be introduced to the horrifying conditions that many of these children are surviving in.  New reader, you can more about the ugly truth in the following video:



There is a family that has really been tugging forcefully on my mama heart strings for the past few months and fundraising has been extremely difficult for this family.  They raffle off high ticket items and only a handful of people donate.  As their dossier is nearing completion and almost ready for submission, the FSP is seriously lacking.  Seriously, they only have a little over $1,160 in her grant fund. Soon, they will travel to rescue Shannon, their daughter across the seas.  I worry.  Oh how I worry about them getting to E.E. and coming home with their littler girl.

Did I mention that because Shannon is older, she is already in a mental institution all because she is over the age of 5 years-old and all because she has Down syndrome. This little child is in an institution.  How long can she survive there with out proper care, without proper nutrition, without a loving parent?

Did I mention that sometime back a family committed to sweet Shannon and that the adoption fell through?  This little girl lost TWO parent her biological parents and then her potential adoption parents.  Please do not left her go through this a 3rd.

Shannon


Do you see this fantastic bracelet?  It compliments every single outfit.  It is that versatile.  Ellie likes this fashionable jewelry as well and she has excellent taste.




It is hand-made and one of a kind.  Are you jealous?  Do you want one?  What if I told you that  you could get your own hand-made, unique bracelet for just $10 and that all the proceeds help the Sphak Family bring little Shannon home?

That's right!  Just $10 and you help a little girl unite with her forever family.  Unique bracelets that also make great Christmas, Chanukah, and birthday gifts.


These bracelets were lovingly made by the Sphak family who so much want their sister to be home with them.  They used "orphan" glass beads which are beads left over from various projects.



Autumn for the Quinn Family

Finally, there is a family in desperate need of funds as well.  Patti from A Perfect Lily is hosting an iPad2 giveaway to raise money for the Quinn family who is adopting Autumn (Donna on RR).  Learn more about this family's journey and the big iPad2 giveaway here.  



-Anna



Developmental Update: Brought To You Buy the Letter "O"

In the past two months, Ellie has blossomed and so much so that many people have commented on the progress she has made.  I wish that I could take credit, but it truly is all Ellie Bear.

She looks all sweet and innocent, but she has spunk.


Just think of everything I could get done or create if I had one quarter of Ellie's motivation, energy, and drive to explore new ideas & activities.

Stats:

Length 32.25 inches
Weight 22 pounds

Ellie grew ~ 3 inches in the past 6 months (75-90% Ds, 15% typical chart)
Ellie gained 2 pounds in the past 6 months (50% Ds, 3-5% typical chart)

Spit up down to twice a day :)  No dietary or medication changes.  We theorize that her huge growth spurt greater more room and therefore less pressure in her digestive tract.  

Speech/Communication:  
Ellie has new words!  "Oooh" or "Eww" for shoes & go.  "O" (long O" for go).   She is also now trying to sign "water" and "sandwich".  Although it all looks like a slight variation of "eat' to me!

My little Elles Belles has started to complete my sentences with a sign.  Every night as a part of our routine we read a bedtime story.  I say "Ellie, let's go read a book.". Lately, I say "Ellie, let's go read____" and she signs book!  

The chunky chicken talks up a storm. No lie.  She talks A LOT.  Like her mother!  However, I have no clue what she is saying.  It is full on jargon (is that the correct word my dear speech pathology friends???).  She rattles off a bunch of words that are unique to the language of Ellie-ville.  There is intonation in her string of babble as though though she is carrying on this great conversation.  It is especially evident when she "speaks" to herself in the mirror.

See the Social Interaction for giving commands to Ellie so that she understands what is expected.

Sometime you just have to kiss yourself.
Mirror: Ugly, but non-breakable from IKEA


Social Interaction /  Play:
Pretend play is starting to emerge.  All of her animals are "fed" using one of her square nesting cubes.  Did you know the nesting cups are drinking cups?  She also has conversations with her stuffed puppy (Build A Bear).

Conversations with a Puppy: Huh? Woof-Woof, you look just like Sophie Dog.


For the longest time, Ellie would sit quietly or go quickly to and fro like a ball in a pin-ball machine.  She would rarely acknowledge that other children were around her.  She would ignore them when a toy is stolen from her.  Now we have an assertive little bearity-bear.  If a child is just sitting on the steps to a slide, she maneuvers her way past them so that she may go down the slide.  

Parallel play is still seen and is developmentally appropriate at this stage.  She also seems to think it is great fun to put the spaghetti strainer on my Godson's head.  It is a hat!


Here Grant.  Put this strainer on your head.  You will be so handsome and all of the ladies will flock to you.


Ellie now shows interest in what other children are playing with and she tries to play next to them. The other day, she tried to take turns with 2 year-old Grace in places the rings on a stacker.  Whoot whoot!






Finally, my daughter eats off of a plate.  Most of the time.  Make that, some of the time.  In the land-of-Ellie not throwing and flinging is a big milestone.  We say "Ellie sit in chair", "Ellie, food on plate.", and "plate on table".  Notice that each command is 1. short and 2. specific.  What I mean is, I do not just say "come here", "sit here" or "set plate down" because that is too abstract for her.  Where is here?  What is down?  It has taken me 2 years to figure this out, but I figure better late than never.  Keep it simple.  Keep it specific.




Gross & Fine Motor:
The Chunky Chicken climbs and with reckless abandon.  She climbs and crashes objects.  Some of this is typical toddler behavior and some of it is motor seeking.  That is another post related to SPD.

Yes. Yes.  It is a good idea to balance myself on this shaky, wheeled-toy to get onto the swirly, wheeled chair.


Her little fingers can manipulate the small on-off buttons on many toys and she can practically open doors.  We had to get door locks to keep Ellie inside and to prevent the furbabies from escaping.  Ellie is also excellent at removing those pesky outlet covers (all brands too as we have tried many).  




She still is not pointing which I believe it holding back some of her signing, but she is taping at objects purposefully--ie pointing with all fingers minus the thumb.  This is BIG progress from throwing or grabbing.  

I am so proud of my Ellie Bear. 

I just love Signing Time! and my blocks.  In fact, I want to sleep with my blocks, bringing carry them around the house, and go to the store with them.  (Kohl's Nesting Cups  = the best $5 ever spent)


Monday, September 19, 2011

Defective: Designer Genes and Designer Babies

I try not to write about my political views or religious beliefs and yet I feel that I can no longer keep my thoughts quiet. This is not a discussion about being pro-life or pro-choice so please do not use my comments section as a means to argue such an explosive topic. This is a post about fear.  Pure, unadulterated fear for the future treatment of my child.  My daughter.  My Ellie.  Plus all of the other people who are deemed by some as "less than worthy".

Approximately 1 out of 700 infants are born with Down syndrome.  That means there are several individuals gracing our world with that extra special 21st chromosome and that is not just in the United States.  Down syndrome unites us in that it crosses all cultural boundaries and ethnicities.

Some infants are diagnosed* within the womb and some babies post-natally.  Some mothers had genetic testing and others did not.  Approximately 3 in 100 pregnant women are told that they are at a higher risk in carrying a child with Ds.  These woman are then told to have more extensive and riskier testing that results in 1 to 2 miscarriages per 100 women.  Yet with the 1 in 700 people statistic, that is more than 400,000 people in the United States alone!

Testing is never 100% accurate and the same goes for this new blood test that looks for Down syndrome and Down syndrome only.  True, it is more accurate.  True, it is safer.  True, it can determine if a baby has Ds early on--at ~98% accuracy.  Or more importantly, that it is 2% incorrect or in terms of people-2 infants out of 100 do not have Trisomy 21 even though they were prenatally diagnosed as potentially having Ds.  TWO infants out of 100.  I fully recognize that not every mother carrying a child with Ds will abort.  I recognize that many parents just want to be informed and "know ahead of time" to prepare.  I also fully recognize that abortion is a legal choice in the United States.  I also know that many families do decide to abort fetuses who have a high risk for chromosomal abnormalities.   I also know that many studies show that parents are not given enough support or correct, up-to-date information to make an informed decision about possibly raising a child with Ds.

I have been trying to tell myself that this test is not about "making a perfect race".  Although in the very first paragraph of the Contra Costa Times article, the author refers to this new test as  "raising the prospect, and perhaps peril, of a world with fewer imperfections."  Does that sound familiar?  Like Hitler.  I want to know where the line is drawn.  I want to know why all of this money is going into more and more testing rather than into social programs, medical care, and education.

This test targets Ds specifically.  What about other disorders?  What about other syndromes? What about braces?  What about personality traits?   What about having curly red hair? What about the possibility of maybe, possibly, perhaps, plausibly, likely, feasibly having depression later in life (I might not be here!)?

Is this genocide?  The definition of genocide according to google.com  & Wikipedia is "The deliberate killing of a large group of people, especially those of a particular ethnic group or nation"or "the systematic killing of substantial numbers of people on the basis of ethnicity, religious, political opinion, social status, or other particularity; Acts committed with the intent to destroy, in whole or in part."

I am scared.

I am scared that Ellie will be one of a few instead of the one in 700 hundred.

I am scared that less funds and less research will go towards programs for people with different abilities, and not just those with Ds.

I am scared that many woman will not receive proper counseling and will therefore make uninformed decisions about such a monumental part of their lives.

I am scared that insurance companies might have greater control over our medical decisions and life decisions especially when it comes to bringing in children who are "defective" into this world.

I am scared that we have crossed that ethical line of tinkering with humans.


My blond hair, blue-eyed daughter.  Would Hitler have approved?  No, for she has 47 chromosomes.


*I use the word "diagnose" loosely here since the current tests discuss the results in terms of "risk ratios".  Such as you have a 1 in 20 risk of carrying a child with Down syndrome.  A true diagnosis comes after birth when the child's blood is drawn, sent to a special lab, and a karotype performed to map out the infant's chromosomes.


References:
Chiu, R., Akolekar, R, Zheng, Y, et al. (2011) Non-invasive Prenatal Assessment of Trisomy 21 by Multiplexed Maternal Plasma DNA Sequencing.  British Medical Journal 2011; 342

National Down Syndrome Association of Central Texas. (2011) viewed at http://www.ndss.org/

Krieger, L. (September 2011). New Prenatal Blood Tests Developed at Stanford Can Check Fetal DNA, Raising Ethical Questions. Contra Costa Times. viewed at http://www.contracostatimes.com/news/ci_18868877 on 9/19/2011

Simpson, Barabara. (September 2011). Hitler Would Love It. WorldNetDaily. viewd at http://www.wnd.com/index.php?fa=PAGE.view&pageId=346093 on 9/19/2011
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Sunday, September 18, 2011

Retarded.



Warning: Have your tissues handy. Seriously, I almost could not compose myself when this sweet, proactive, loving sister started to crumble and then when she was with her little brother. Actually, I am sobbing as I type this.

Let us "break the walls down". Let us take a stand!


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Making A Lady Bug Cake


I have to confess that I reviewed multiple websites and "borrowed" their ideas when making this cake.

Now, I cheated and used a store-bought cake mix--Butter Yellow Cake Recipe by Betty Crocker.  I also did not buy the dome-shaped pan that many people swore I needed.  Instead, for the body of the lady bug, I used a clear, glass pyrex bowel (1 Qt, but you can go bigger) and poured in the entire batch of batter.  For the head, I used a chocolate cupcake that I made for Ellie's playdate party a few days ago (nope, it wasn't stale!) for the ladybug's head.   I imagine you could set aside enough batter to make 1 dome cake and 1 cupcake.





Cake Decorating Ingredients:
1. Box of cake mix (plus ingredients listed on back of the box--ie eggs, water, etc)
2. Icing (see below if you want to make your own) 3-4 cups
3. Junior Mints
4. Black Liquorice
5. White Gum Drops
6. Coconut
7. Black, Red, & Green food coloring.
6. Icing tips or ziplock bag

Cake:
Preheat your oven to 350 degrees.
Mix together batter and pour into pyrex bowl.
Bake for 50-55 minutes or until an inserted toothpick comes out clean
Allow to completely cool


Icing:
Mix together 1 stick (1/2 cup) of butter and 2 teaspoons of Vanilla extract.
Alternate adding in 4 cups of powdered sugar and 3-4 tablespoons of milk.
Consider sifting the powder sugar to eliminate clumps.


Decorate:
Set aside a small amount of the icing.  Add in red dye to the mixing bowl whip in until desired color is achieved.  I do not use icing bags but rather ziplock bags with the corner snipped off.  You can still use the cake decorating tips if you want stars and whatnot or you can use the ziplock bag's open-tip to create simple lines or dots.  After icing most of the lady bug cake in red, I then added in a few drops of black dye to the bowl.  The remaining icing will cover the head, make a line down the center of the bug's body, and fill in the back end (this is where I used a star-shaped icing tip).

Use Junior Mints for the spots on the ladybug's wing.  Use two white gumdrops to form the eyes or use the plain icing icing to form eyes.  Break the piece of black liquorice in half to form antennas.
(Note: I went to bulk candy section at the Super Target and bought only 2 pieces of gum drops and only 1 piece of liquorice--this saved me from eating a tons of left over candy!)

Use half a bag of coconut and mix with a few drops of green dye.  This will be the grass that your lady bug sits on.

Enjoy!





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Many Faces of Ellie: Birthday Style!

One of the ladies in my mother's club once said "a birthday is a day to be completely dedicated to her.  It is the one day of the year that is her day and is all about her".  I really took this to heart and hence, the week-long celebrating. A Birthday is a Day of Fun, Family, Friends, and Celebrating Life!  Read about a year in review here.




Yesterday, we celebrated Ellie's 2nd birthday lady-bug style.


Easy Peasy Lady Bug Cake

This was not a typical large party with tons of energetic toddlers running around as I hosted a playdate earlier this week with all of her friends.  Our celebration was fabulous as Papa Charles & Grandma Dunja drove down from Plano and Ellie's Godparents with their 2 kidlets joined in the fun.




BeepBeep!

Andrew and I purchased the Step-2 Buggy for her birthday due to an incident at the mall.  Our mall has a fantastic, free, indoor playscape that we tend to frequent.  One time, there was a pink and purple Step-2 Buggy parked just outside the playscape.  Toddler Bear was adamant that this buggy was hers.  She kept leaving the playscape to climb into this other child's buggy.  Hence, the idea for her birthday present.  




I think Ellie needs a bigger teddy bear.


It completely escaped Andrew's memory that we were going to purchase this wagon of happiness for Ellie as he also bought Ellie a gift. At Costco, there are these gigantic and I mean HUGE teddy bears.  Of course the Bear-Bear needed a ginormous teddy bear.  The Bear is larger than her!  Andrew claims that the teddy bear is from him and the buggy wagon is from me.  Hum. . . apparently we each got her a large present.


I think she wants more cake icing.


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Cecostomy Tubes R Us

Here we are - two posts in 30 days! It's scandalous, I tell you!  Seriously though, I bet you all thought that I abandoned ship and woul...