Lizzie meets her team at OHSU

Dr. Pinter is obviously passionate about his role and
the people he helps.

This was no ordinary six-month appointment. Of couse, Lizzie is no ordinary six-month-old. So it follows that this was an extraodinary experience, starting with the wonderful pediatric neurologist who directs the Down Syndrome Clinic at Oregon Health Sciences University - Dr. Joe Pinter.

The OHSU clinic is among a handful of its kind in the United States. How fortunate we are to have one in Portland. Such clinics are more costly to maintain. But the benefits for families are tremendous. The clinic concentrates teams of specialists in one place and provides comprehensive care.

Our five-hour appointment started at 12:30pm Friday with checks of Lizzie's weight, height, blood pressure and pulse. All checked out great - she falls in the 15th percentile for height and weight. Her blood pressure and pulse are a little higher than mine but nothing unusual.

Then we visited with two audiologists. Lizzie didn't enjoy this part but we learned a lot. The first test sent signals of varying frequency through her ears to gauge specifics about her hearing and the second was a simple test of ear drum activity. Lizzie's left ear continues to pass with flying colors; her right ear has a little fluid that will likely necessitate tubes in a couple years. We were reassured that she is hearing us and the fluid is not causing any hearing loss, just some muffling on one side.

Next... speech therapy. The common abilities for a six-month-old are imitating those around us, taking turns, and making consonant sounds like ba-ba-ba-ba and da-da-da-da. We have some work here. Lizzie makes vowel sounds and mimics you when you smack your lips together in a kiss. In the coming months, we will work harder on the consonants and games where you take turns.

Physical therapy followed with a team of four therapists.

Lizzie rolled front-to-back and back-to-front, showed off her neck strength and her tracking. She is excellent with following objects and turning towards people who enter the room.

While she tracks well, we are going to follow-up with Casey Eye Institute for further vision tests. Sometimes she appears to have a lazy eye, which is a result of her lower muscle tone.

I've listed many things here for us to follow, including tubes for Lizzie's ears and the lazy eye. These are common to people without Down syndrome, too.

I had tubes in my ears when I was 3 years old. I've known several people who have lazy eyes. One of the things we learned on Friday is that Lizzie is more like us than anything - she has our genes (just some extra genetic material).

The extra chromosome does cause a handful of differences. As a result, one of Dr. Pinter's objectives with the clinic is genetic research to understand the conditions that go along with Down syndrome and possibly work to proactively prevent and treat them. Lizzie's statistics will join his database of research. And the clinical and developmental data collected is intended to help professionals and parents get a better handle on what is normal for children with Down syndrome.

We spent the end of our afternoon with Dr. Pinter, learning more about what to expect from Lizzie, the resources in our community, and how we will be a part of the clinic in the coming years.

The fact is, we are living in a more enlightened time for Down syndrome and other genetic conditions. Children and adults with Down syndrome are accomplishing amazing feats and are becoming more accepted. I'm not going to be the one to force Lizzie into a classroom of peers if she isn't ready, or if she will hold the others back. At the same time, I'm learning about opportunities to integrate her into schools or activities that are "appropriate." She will have her unique place in this world that she carves out just like the rest of us.