Tuesday, October 11, 2011

Winners of My First Raffle

Drum Roll

The raffle has come to an end and the culmination is the giveaway.  The number of entries is 129, the amount of money raised is $775.  I am thrilled with this number.  My fundraising continues until the day of the race, November 6th.  So while you may have missed out on the raffle prizes, it is not to late to donate to congenital heart disease research.

And the winners are

PF Changs : Adam

Starbucks: Geoff

Heart Bracelet: Sarin

Heart Pendant: Mildred

If I have not sent you a thank you email yet, I am working on it.  I am hoping to do more raffles in the future.  Thank you for your continued support on our family's journey.

Monday, October 10, 2011

24 Hours Until the Raffle

In 24 hours I am picking the 4 winners of the following prizes: $25 PF Changs Gift Card, $25 Starbucks Gift Card, heart bracelet, heart pendant.

If you want to be in on the raffle the minimum donation of $5 to my favorite charity will get you one entry, donate more get more entries.  There are only 108 entries so far.

See the rules and prizes here

Donate to help fund research for congenital heart disease here.  Your donation is tax deductible as well. And you will be entered to win one of those prizes I am talking about.

The walk is November 6th.  You can donate after today but you will not be eligible for any of the fun prizes.  And to all who have donated, I am so thankful.  This research could help save another child's life or find a new technology that makes open heart surgery obsolete in the future for some heart repairs. 

Sunday, October 9, 2011

It Takes a Village (of specialists that is)

David's doctor's
Pediatrician - regular visits
Cardiologist - once every two months
Pulmonologist - once a month in winter
GI- supposed to be every three months
Pediatric Surgeon - monitors g-tube every three months
ENT - annually or if ear tubes fall out
Audiologist - every 6 months for sedated hearing test
Opthamologist - annual
Hematologist- haven't used him since the NICU but he could come in handy some day
Compounding Pharmacy - every two weeks for meds

David's therapy
evaluations every 90 days
physical therapy - once a week
feeding therapy - once a week
speech therapy - once a week
developmental specialist - once a week
occupational therapy - approved for once a week but taking a break
in patient feeding evaluation coming November 18th with the horse whisperer of feeding Marsha Dunn Klein

Saturday, October 8, 2011

Community Down Syndrome

Every skin color.

Every nationality.

Every religion.

Pro choice.

Pro life.









College graduate.

High school drop out.

Doctors, lawyers



Big family.

Little family.

Adoptive parents.

Surprise pregnancy.

Planned pregnancy.

Pre-natal diagnosis.

At birth diagnosis.


All of us part of one online support group.

We disagree at times but all agree we love our children.

Friday, October 7, 2011

Only 4 More Days Until the Raffle: Great Prizes

David has congenital heart disease.  Approximately 30 to 50% of babies with Down syndrome also have a heart defect, about half of those babies will have open heart surgery.  There was a time, within the last 20 or 30 years when babies with down syndrome were not deemed worthy of heart surgery.  Many of those babies lost their lives.  There was a time when no child had open heart surgery.  Luckily there have been great advances in open heart surgery for infants but much more research is needed.  That is why I am participating in the congenital heart walk.  Donations go to the children's heart foundation for research in congenital heart disease.  I would like nothing better than to see advances in surgery during my lifetime. 

So you can donate as little as $5 and be entered to win the great prizes on my blog: $25 PF Changs gift certificate, $25 Starbucks gift certificate, a heart bracelet, or a heart necklace.

So check out our donation page here.

Check out the prizes here.

Thursday, October 6, 2011

Favorite Feature of Down Syndrome

I feared the features of Down syndrome when I was pregnant with David. When he was born with hydrops and gained 2 pounds of fluid in two days I couldn't tell what features were from the swelling and what was from the extra chromosome.

When the team came in on day two to tell me they weren't sure if he would survive they brought his footprint certificate; you know what stood out? The sandal gap big toes. He has the cutest feet with that extra special space between the toes. And what's cuter is he uses his feet like hands. We call him monkey feet. Who else do you know that can pick his nose with his toes or disconnect his feeding tube with his toes?

When he came home from the hospital I tried not to post or print pics where you saw the features of Down syndrome. Now it rarely bothers me. In fact sometimes I just find it enchanting. His almond eyes and tiny nose are so cute. Not to mention the smile with the tongue out. That is who he is and when I see pics of him I just see the baby I love.

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Wednesday, October 5, 2011

31 for 21

I am doing a challenge called 31 for 21. We are supposed to blog for the 31 days of October to bring awareness to Down syndrome (T21). To see a list of bloggers also attempting this challenge visit

So the basic info on Down syndrome is that people with Down syndrome have an extra chromosome. You and I have 46 chromosomes (2 copies of 23 chromosomes). People with Down syndrome have 47 chromosomes. They have 3 copies of the 21st chromosomes. I believe this is the smallest of the 23 chromosomes and is associated with 400 genes. That could help to explain why so many aspects of a person can be affected by this extra chromosome.

Enough education for one day. Hope to get some photos up tomorrow.
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Tuesday, October 4, 2011

First Buddy Walk

This year was our first Buddy Walk. Last year David was fresh off of oxygen and I had just returned to work. I was still consumed with worries and stress of when heart surgery would happen. I related much more to families facing heart surgeries and dealing with feeding tubes, I still do. I also wasn't ready to face my fears of older children and young adults with Down syndrome. This year it was too hot in AZ, over 100 degrees. But it was fine. We chatted with a family with a cute little 3 year old. My 5 year old was hot and bored but next year we will go again. Its not every day I get to hang out with a bunch of people celebrating Down syndrome.
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Monday, October 3, 2011

The Inside Story - Reflections Part 2

So if you read yesterdays post you know what was happening on the outside. What was the real story? You know the one inside my head.

We got pregnant right away after we decided to start trying for baby number two. I knew I was pregnant because I felt so sick at the time of implantation. It was so different from the first time. I kept taking pregnancy tests but it was too early. Finally the test showed what I already knew. By that time I felt awesome. I had a dentist appointment that day and my dental hygienist has a daughter with down syndrome. I told her I just found out that I was pregnant and I had a feeling with my old eggs that the baby had Down syndrome. She thought I was crazy. She had her daughter in her 20's and she knew old age didn't mean diagnosis.

At that first ultrasound they saw some signs of blood in the uterus. Odd but not unheard of; doesn't means anything to the perinatologist.

The second ultrasound was that fateful nt screening test. When I went in I knew an nt under 3 and a nasal bone present would be good. The nt was 2.3 which wasn't really good, according to the perinatologist it was high. But they had seen a nasal bone. So when he said be prepared for a high number when we call, I really thought 1 out of 25. When he called and said with your blood work your odds for Down syndrome is 1 in 6, I went into research mode. That is when my love affair with google (now I call it Dr. Google) began. My research focus was people with those odds that had a baby without Down syndrome. Sometimes I read stories of those that terminated the pregnancy after an amnio confirmed the diagnosis. We chose the next step to be a detailed ultrasound at 15 weeks. More research this time about amnio. What was it, how big was the needle, what were the miscarriage odds, how accurate were the results?

So 15 week ultrasound, I swear the tech took a thousand images. Result was absent nasal bone. What the hell one was there at 12 weeks. They must be wrong. Also a velemenious cord (cord not attached in the center), that must be monitored as well. Okay odds are going up fast it is the day before thanksgiving let's do the damn amnio. What the baby is in a bad position come back in a week. What am I supposed to be thankful for???

We changed that appointment twice to as soon as possible. Research was now what is Down syndrome? I really knew nothing about it what are the health issues, what is the intelligence possibility, what about siblings. All I could picture is a 40 year old man walking odd and hard to understand with ugly clothes and a bad hair cut. So I found an online support group where you could ask questions and see pictures of the babies. The babies were cute. Therapists for speaking and walking would come to your house or daycare. Average intelligence wasn't too scary some said like a 6 to 8 year old (not necessarily a fact but Dr Google said so), hell I could live with someone who had the intelligence of my 3 year old. He was smart and funny. Those termination stories were heart wrenching. The "what if" that they felt after. There was no happiness with that option. The moms of kids with down syndrome were joyful. They had challenges but they had love. I knew this child would bring me joy. The deciding factor after those fateful amnio results was when my husband said of course I will love him. I was worried about daddy accepting him, maybe I feared my own acceptance. We will have him and name him David just like David and Goliath from the bible.

The acceptance wasn't over at that moment just the decision to move forward. Dr. Google and I hung out daily; I learned so much. At times it was too much. Lots of people prayed that the amnio was wrong. I knew the research on that one 99.9% the amnio is right. He has Down syndrome, it is okay we are okay.

I thought we dodged a bullet when the echo said the heart was fine. We thought that would be too much to handle. In retrospect I guess I wasn't 100% in acceptance mode. There would come a time, birth, when I would learn more about acceptance. And I would quickly learn that we can handle far more than we can imagine.

We saw people with Down syndrome everywhere. Restaurants, Costco, Disneyland. Were they always there and I just looked right past them? Or was it a sign? A sign that we would do all the same things after having a baby with Down syndrome. Which is more or less true.

During this time we saw a family out for lunch with a very disruptive child. We were guessing he was autistic. I said to my hubby, you know some day people will be pointing and whispering about us, we will be that family . He said he could care less; he is awesome that way.

Our pregnancy continued. I went to work, I googled, I hung out with my son and husband. After about 6 weeks I was happy on the inside. I started to work out again I googled less. Life went on and I really hoped he would be a cute baby that I would instantly fall in love with.

You can follow the rest of the story here.
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Sunday, October 2, 2011

Heartbeat to Acceptance - Reflections Fall 2009

In September 2009 I found out I was pregnant at the age of 40 (almost 41) I was so excited another child to complete our family.  The first thing I wanted to do was our first professional family photo of our family at the time (see above).  Zac was already 3 and we had never had a family photo taken.  I didn't want the first one to be with a new baby nor did I want to be a big, fat pregnant cow in the picture.  So we went right out and had our pics done, they turned out awesome.  We also decided to go to Disneyland in December, we were going to go for Zac's 4th birthday but the baby was due in May same as Zac's birthday.

October came and we had our first ultrasound on October 1st, it was sooo not exciting.  We took my mom out to the same place where we told her we were expecting our first son, Benihana (where they cook on the tables).  It was my birthday dinner (same thing 4 years before) and the first time we had been back to Benihana since telling her I was pregnant with grandson number one.  She was so excited.  We knew it was early in the pregnancy but we were telling everyone.  I knew that at 41 my eggs were old, but I was advanced maternal age when I had Zac and that turned out fine.

On to the beginning of November, here is the first ultrasound that started to change our lives.  You will notice the NT measurement was 2.34, which is high.  The doctor told us combined with the blood results and my age we might have higher odds than normal for down syndrome.  I knew at my age the odds were about 1 out of 43, so I was guessing they would say 1 out of 25.  The phone call came and it was 1 in 6 odds for down syndrome.  Oh my, I was surprised.  Here is the email I sent out to my friends and family, with the subject News:

If I try to spin it into good news, there is an 84%chance that the baby is fine.
The news that I got is that there is a 1 in 6 odds that the baby would have downs.
We are going to go for another ultrasound in two weeks and meet with the genetic counselor to get more information. Then another ultrasound 5 weeks after that to see how the heart is doing.
Only time will tell. We are hoping that everything turns out okay......

So, it is now the day before Thanksgiving and we are back for our detailed scan. We get the very happy boy picture (they had guessed it at the ultrasound before) and we get the news that there is an absent nasal bone and coupled with our odds from before the doctor would say it is 9 out of 10 odds the baby has down syndrome.  He can only officially give us 1 out of 2 odds for down syndrome.  Here is the next email with the subject, Bad News:

Not to ruin your Thanksgiving but the news is not good.
The odds are now 1 in 2 for down syndrome (I think it is worse but that is the worst they will give you from an ultrasound). Next step amnio next Friday December 4th. Don't know what we will do from there.
Don't really want to talk about it yet so give me some time to digest everything.
Thanks for all your support and love

Next email is about 10 days later the beginning of December, the subject: Baby:

As of yesterday...
We are having a baby boy
We are leaning towards naming him David
And he will have down syndrome
We still reserve to change our minds in the next few weeks, but right now we think this will be the best decision for us

So mid-December we went to the happiest place on earth, and I was truly happy.  Here is the email I sent to a good friend before the trip:

Yes we are going to Disneyland. I think I finished with the tears over Thanksgiving, now I am just left worry over the baby's health. We are so appreciative of everything right now and are really enjoying Zac so we are looking forward to our getaway at the happiest place on earth.
Before Christmas, and the email read, Baby had his fetal echocardiagram:
Had ultrasound number 5 yesterday and they did all of the standard measurements for a 19 week appointment and they did a detailed heart exam. So far totally healthy and growing on track. No heart problems yet. Our first good appointment in weeks.
We are going to have ultrasounds every 4 weeks and then from 32 weeks on we will be doing stress tests 1 or 2 times a week.
As usual David was adorable, he kept putting his hands to his face as you can see in the attached picture.
Merry Christmas. -

I am glad to be able to read the emails from that time and to see that I wasn't too much of a mess.  I remember it being a difficult time but I also remember telling the doctor from the beginning that we were having our child.  Pretty strange from someone who is pro-choice.  I think it is the best choice I ever made in my life.
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Saturday, October 1, 2011

If People with Down Syndrome Ruled the World


I did not write the following article, but found it on the web.  I hope it brings a smile to someone's face today.  Today is the first day of Down Syndrome Awareness Month. 

If People with Down Syndrome Ruled the World

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.
If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

What would happen if people with DS ruled the world?

 If people with Down syndrome ruled the world:

Affection, hugging and caring for others would make a big comeback.
Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.
All people would be encouraged to develop and use their gifts for helping others.
In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.
People would be refreshingly honest and genuine.
People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”
We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.
However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and …can they dance! (and by the way, who needs a date… “Just dance”).
Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?
People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.
People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.
It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)
Order and Structure would rule
We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking…“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.
Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.
What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast … they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.
So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:
  • Schedules and calendars would be followed.
  • Trains & planes would run on time.
  • Lunch would be at 12:00. Dinner at 6:00.
  • Work time would be work time.
  • Vacation would be vacation.
At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.
But there is much, much more:
  • People would be expected to keep their promises.
  • Last minute changes would be strongly discouraged (if not considered rude and offensive).
  • Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
  • Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
  • The “grunge look” would be out, way out.
  • “Prep” (but not pretentious) would be very big.
In the world of Down Syndrome, there would be a great deal more tolerance for:
  • Repeating the same phrase or question
  • Use of the terms “fun” and “cleaning” in the same sentence
  • Closing doors or cabinets that are left ajar (even in someone else’s house)
  • Arranging things until they are “Just so.”
Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.
The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.
At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.
Therefore, in the world of Down Syndrome:
  • Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
  • Here and now would command a great deal more respect than it currently does.
  • Stopping to smell the roses would not be just a cliché.
  • Work would be revered, no matter what kind, from doing dishes to rocket science.
We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.
Therefore, if people with Down syndrome ran the world:
  • Speed would be far less important than doing the job right.
  • Work would be everyone’s right, not a privilege.
However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.
All instruction would include pictures to aid visual learners.
Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).
If people with Down syndrome ran the world:
  • School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
  • Counselors would be able to use visual mediums to help solve problems.
What About News?
If people with Down syndrome ran the world:
  • Weather would be the only essential news item
  • News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?
What About Bad News?
If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”
What About “Behaviors”…
…and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?
We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.
We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.
Therefore if people with DS ran the world:
  • Anger would only be allowed in special sound proof rooms.
  • Trained negotiators would be available to everyone to help deal with any conflicts.
  • The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”
What About Self Expression?
  • Art and music appreciation would be BIG.
  • People would have time to work on paintings and other art projects.
  • Acting and theatrical arts would be encouraged for all.
  • You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight … absolutely.”
  • The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
  • People would be encouraged to get married several times to have more weddings for more music and dancing.
  • Richard Simmons and John Travolta would be national heroes.
  • Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
  • Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
  • John Travolta would be the biggest star.
  • Classic TV hits would be very BIG and take up at least half the TV schedules.
  • “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
  • Wrestling would be very Big.
  • “Life Goes On” would also be very Big and replayed regularly.
  • There would be fewer movies, but they would be replayed over and over.
  • Movie theaters would allow people to talk out loud to tell what happens next.
No Secret Agents
  • People would not hurt the feelings of others and they would also not lie or keep secrets.
  • Therefore there probably would be no secret service agents, spies, or terrorists.
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