Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Wednesday, October 27, 2010

Halloween Cupcake Night!

It's official! It was Halloween cupcake night in the Terry house! We listened to Halloween music on Pandora and decorated one of the best cupcakes I've ever eaten! And, that says a lot because I'm not really a cupcake fan. I was fortunate enough to be given a fabulous cupcake recipe yesterday, and an icing recipe today from a local cake shop. Just in time to add our pumpkins, witches and head stones!
It's so much work putting these fun projects together, but worth every minute! I went to three different stores today looking for cupcake decorations, before I finally found some at a specialty candy/cake store near my house. Apparently, I'm a little behind the 8-ball with buying simple Halloween "edible" decorations ~ the stores were cleaned out!
I wouldn't call the first batch of cupcakes prize winning. This recipe isn't like any other I've come across, so I was a little out of my comfort zone and had to wing it. Round one went into the trash! I filled the cupcake liners with way too much batter and cooked them about one minute too long. No problem ~ I've made lots of batter! The second batch were heavenly! These cupcakes are as delicious as they are adorable. Nathan and Emily really did a great job with them and had a lot of fun in the process. We even tried our hand at a little edible spray painting for effect! It was really cool!

Emily is wearing Nathan's hat in this picture. He refused to wear it, so she did! It looked so adorable on her. After she went home, Nathan found the hat and kept putting it on! I wasn't able to snap a picture (imagine that) but I will!

I love these moments.

Monday, October 25, 2010

Down Syndrome Awareness Month (Part I)

October is Down syndrome awareness month and many in the Ds community are blogging about it everyday, in a campaign called 31 for 21 (31 days for triosomy 21, the medical term for Ds). I'm not one of them. However, I didn't want the month to go by without acknowledging it's importance in our life.

When Nathan was born, it was my experience that all the available literature either painted a rosy picture of having a child with Ds, or provided us with a "worst case scenario" glimpse into his world and ours. I've come to learn that ~ there is no substitute for personal experience and like every other child, each is a joy and each presents their own challenges. Our life isn't easy ~ my schedule is insane but how's your life going? Is it easy? Are you busy? We all have a choice ~ to look at it through rose colored glasses and make the best of it, or be consumed by the worst case scenario.

With this said, there is a reality that a family and a child with Ds must confront ~ the possibilities. The good and the bad. I'd like to give you a glimpse of what that may be ~ a glimpse into our journey. Some bridges we've crossed ~ others are yet to come.

Individuals with Down syndrome may have a few or all of the following characteristics:

Flattened nose / flat facial profile (90%)
Upward slanting, almond-shaped eyes (80%)
Low muscle tone / hypotonia (80%)
Increased flexibility (80%)
Excess skin on back of neck (80%)
Small, simple ears (60%)
Poorly developed 5th finger (60%)
Small head
Brushfield spots on the iris of the eye
Skin folds of upper eyelid covering inner corner of the eye / epicanthal folds
Short, broad hands with short fingers
5th finger curves inward
Single crease on the palm of the hand
Wide gap between 1st & 2nd toes / sandal gap
Short stature
Fusion / syndactyly of 2nd and 3rd toes

Medical Complications Associated with Down syndrome
Early-Onset Alzheimer Disease (11% by age 50; 77% by age 70)
Dry, Hardened, Flaky Skin (75%)
One or More Abnormalities Present at Birth (50%)
Heart Defect Possibly Requiring Open Heart Surgery (40-60%)
Thyroid Disorders (up to 50%)
Obstructive Sleep Apnea / Pauses in Breathing During Sleep (33%)
Atlantoaxial and/or Atlanto-occipital Instability (10-30%)
Blockage in Stomach or Intestines Possibly Requiring Surgery (12%)
Autistic Disorder (5- 11%)
Seizures / Epilepsy (10%)
Increased Risk of Childhood Leukemia (2%)
Cataracts ~ Vision Problems
Hearing Loss ~ Ear Problems
Breathing Problems
Increased Susceptibility to Infection
Increased Susceptibility to Dental Problems
Increased Risk of Autoimmune Disease
Problems with Muscles & Skeletal System
Tendency for Obesity / Weight Gain
Males are Unable to Reproduce (this is debatable)
Increased Risk of Testicular Cancer in Males
Intellectual Disability & Developmental Delay for Individuals with Down syndrome
Variable Range of Mental Disabilities can range from Mild to Moderate
Mean (Average) IQ of 42 Range of IQ from 8 to 67
Developmental Delay in Achieving Milestones
Need for Physical Therapy
Need for Occupational Therapy
Need for Speech Therapy
Need for Early Intervention & Case Management

Long-Term Prognosis for Individuals with Down syndrome
Participate in Community Sports, Activities, & Leagues
Participate in Special Olympics & Therapeutic Recreation
Inclusion in Regular Classes
Complete High School
Attend College or Post-Secondary Education
Employed Competitively
Employed in Workshop Setting
Live Independently
Live in Group Home
Have Friends
Have Intimate Relationships
Get Married
Life Expectancy (age range of 50s-60s)

Persons with Down syndrome are ~ "More Like Other Children Than Different"

Thank you to Mommy With My Special K's for this list. It originally came from NDSS a few year ago, so thank you to them as well!