Wednesday's Words

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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.

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. 

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

Community Down Syndrome

Every skin color.

Every nationality.

Every religion.

Pro choice.

Pro life.

Gay.

Straight.

Married.

Single.

Old.

Young.

Rich.

Poor.

College graduate.

High school drop out.

Doctors, lawyers

Students

Unemployed.

Big family.

Little family.

Adoptive parents.

Surprise pregnancy.

Planned pregnancy.

Pre-natal diagnosis.

At birth diagnosis.

ALL PARENTS OF CHILDREN WITH DOWN SYNDROME.

All of us part of one online support group.

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

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.

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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