3 stories of bustling: 3-21

Monday, March 21, 2011

3-21

Today is World Down Syndrome Day! 3-21 represents a third copy of the 21st chromosome {Trisomy 21} or more commonly known as Down syndrome.

Our little Anthony has this extra bit of goodness.

While other families may go into some complicated definitions and explanations of Down syndrome, statistics, and otherwise, I will celebrate the day by explaining what Down syndrome has meant for our family.

As I write this, I am sitting in a regional, specialized children's hospital with Anthony.

We've been here for 6 days so far, and have no idea when we'll get out.

Because he has Down syndrome, Anthony had a high chance of having a congenital heart defect at birth.

He underwent successful open-heart surgery at 3 months old to repair that defect.

Anthony also had a higher chance of developing leukemia because he has Down syndrome.

We thought nothing of that chance because we figured he'd already gone through more than his fair share of medical issues with his heart.

12 months after his heart surgery, Anthony was diagnosed with Acute Lymphoblastic Leukemia.

Half our family spent 14 months in Seattle while Anthony underwent intensive chemotherapy treatments. Six weeks ago, we finally became a whole family again, with Anthony being allowed to return home.

Time together as a family was so wonderful again.

Anthony was enjoying everyone else, they were enjoying him, and I was enjoying being domestic again (instead of just worrying about which chemo drug when, or what side effects to deal with.

Last week, Anthony's cold developed into pneumonia.

He was ambulanced 3 hours to the regional children's hospital.

He has RSV, paraflu, and pneumonia.

Another risk for children with Down syndrome is the fact that their airways are typically a lot smaller and "floppier" than children without Down syndrome.

Smaller airways mean Anthony cannot excrete his secretions (get rid of the crud in his lungs and elsewhere).

The second he falls asleep, Anthony NEEDS OXYGEN.

We will not be discharged until he no longer needs oxygen at night.

Anthony has severe to profound hearing loss in one of his ears.

That's better than the total deafness we thought he had at birth.

He had failed 2 newborn hearing tests.

Before leukemia, Anthony had moderate hearing loss in one ear, which was remedied with a hearing aid.

Chemotherapy is audiotoxic (hurts the ears). Thus, the profund hearing loss in that ear now.

Since birth, we have had Anthony in therapy~~

speech, occupational, physical.

All helped him to develop as well as he has.

Anthony crawled at a young age, especially for having Down syndrome.

This is because he loves to swim, and we took him to our local pool every day during his first summer.

During leukemia treatments, Anthony still attended therapy, which enabled him to maintain his abilities. That is a feat in and of itself, with the toxicity of chemotherapy.

This is how our lives are painted with Anthony's Down syndrome.