Monday, June 16, 2008

Mermaid's Announcement



This is what we sent out to our friends and family once we got new info on Mermaid.
(Code names: our daughter, Mermaid; my husband, My Hero)

Hi Everyone,

It's a gorgeous day! Many of you know that we've been concerned that Mermaid may have Downs Syndrome. Today, we had an excellent visit with a pediatric geneticist. Get this name, Kawame Anyane-Yeboa. Wow! Our genetic counselor was Edwin Guzman. That was a little easier to say. Anyway, after filling out our family medical history chart and discussing our concerns about Mermaid, they examined her. She was a total charmer, of course! I've been reading up on this so I was listening for clues. They noted slanted eyes, depressed nasal bridge, tendency to stick out her tongue, soft silky hair (What?! I never read about that sign. I guess that's a benefit), shorter curved pinky and hypotonia (low muscle tone).

Then came the big talk. They said, many of the classic markers for Downs Syndrome are not found in Mermaid and though her muscle tone is on the low end of the spectrum she's actually doing really well (she rolls over, brings her feet to her face, stands and bears her body weight, etc.). She also gurgles and hums to me. She makes signs to me about what noises to make for her (I'm the dolphin, she's the trainer). She smiles, laughs, etc. So.... They ordered a blood test for Downs Syndrome and a "Fish 21" that's industry-speak for checking for Mosiac Downs. They're also running a thyroid check. I didn't really get that part. The upshot is that they feel certain that Mermaid is out of the ordinary. We already knew she was extraordinary. But they're not sure exactly what it is yet, so we're gathering information. It will be 2-3 weeks before we have results and get to discuss them.

I've been learning about this for some time. Sometimes a little paranoia is a good thing. ;) My Hero prefers to wait for facts and then get a life perspective. Once we know what we're dealing with, we'll seek out other families in similar situations and learn from them. He says we'll all get matching T-shirts that say "We're down with Downs!" He's so fantastic and ready to embrace whatever life has in store. I'm sure we'll meet several medical professionals along the way as well.

For now, our family is pretty much the same. It's a relief to know a little more and digest this new information incrementally. I know Mermaid is important to you and I wanted you to have a chance to digest the information incrementally, too. Sure, we wish Mermaid laughed more often and had stronger muscles, but hey, she's got that soft, silky hair ;) We're really so happy to have her in our family and we just couldn't do without her. We feel especially grateful to have enjoyed such a remarkable home birth experience which allowed all of us to fall completely in love with her before worrying about labels and secondary (and I might add, temporary) issues. We have already been so richly blessed by her presence and we're sure the future holds more of the same.

Love,

Us

3 comments:

Plainbellied said...

I just wanted to add that besides having a wicked cool code name, Mermaid is SO BEAUTIFUL!

Urban Tangerine said...

I'll have to get some pictures up with Mermaid wearing one of the many flower clips you made. She really looks cute in those. In fact, on Sunday each of my four girls were wearing one of the flower clips you made.

Thank You!

SumGreater said...

i love the flower clips, too!! my daughter and i each wore one to the ice cream shop at the beach. You should start a company. We'll come up with codenames for us all. Sounds fun!