Saturday, December 10, 2011

Holiday Pics Professional

These are the pictures that didn't make the cut for the Holiday Cards this year.  So you can just imagine how cute those are.  I didn't want to ruin it for those that are getting cards the old fashion way.

Sunday, December 4, 2011

Holiday Spirit

David's heart appointment was amazing, 4 months post open heart surgery.  His heart is a perfect repair. We are stopping the heart medicines this month and our next follow up is in the Spring.  He will be on Viagra through the winter as a precaution due to his history of pulmonary hypertension.  At the last appointment his mitral valve had been leaking and there was a chance of medication for life, I guess it was just typical David needing more time to heal.

This afternoon, we are getting professional pics done.  These were the snaps I did at home and it confirmed my need for a professional.  Not so much for David's cooperation, but for Zachary's. 

Next Friday we are going to Tucson for the big appointment with the feeding therapist for our initial evaluation.  I am so hopeful.  I can't wait to give you that update next weekend. For those with feeding issues of your own you can check them out at or

Tuesday, November 29, 2011

Picture Time

Loving life. Thankful for my boys.

Praying for good news on Thursday from the cardiologist.

Looking forward to December 9 meeting with the food whisperer in Tucson to evaluate David's oral skills.

Hoping to schedule professional photos of the boys soon.
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Friday, November 18, 2011

I am Pro-Choice: Having a Baby with Down Syndrome was the Best Choice I Ever Made

I am pro-choice and I had a prenatal diagnosis that David would have down syndrome and I continued my pregnancy.  Because that is what pro-choice means. Pro-choice does not equal pro-termination.

I am bothered by the people that blame pro-choice people for the termination of babies with down syndrome.  Obviously not all of us make that choice (there really are others like me). There was a recent photo on facebook that just pissed me off (damn social media) a little boy with down syndrome holding a sign saying he is one of the 10% that survived Roe vs Wade.  Just because it is legal to terminate doesn't mean you should.  And even if it was illegal to terminate doesn't mean that people wouldn't.

How can the termination rate for a prenatal diagnosis of down syndrome be 90% if approximately 50% of people in the United States are pro-life, shouldn't the termination rate for pre-natal diagnosis be 50%. 

So what are the pro-life people who terminate saying about a person with down syndrome?  That is what I want to know.  Are they saying that the life of a person with down syndrome is not the same as a person with 46 chromosomes?    Are they saying their political and religious views apply to other people but not them? Are they so scared and misinformed that they think it is the right thing to do?  After someone like that terminates their pregnancy are they then pro-choice or just a hypocrite?

I am still pro-choice.  And selfishly, I wish everyone would continue a pregnancy with down syndrome so I wouldn't have to think about all of the people that think a life like David's isn't worth living. 

Sunday, November 13, 2011

Picture Update

Love Swinging

Hand Me Down Toys Rock

Pumpkin Patch at the Zoo

Too Cute at the Heart Walk

More Cuteness

Snug as a Bug

Mommy Loves Me

Presenting the Newborn King
Heart Walk was a Blast

Hanging on the Monkey Bars

First Time Ice Skating

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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