Saturday, August 23, 2008

Follow-up LC appt. today

I saw the LC again this afternoon and once again left her office feeling very optimistic and full of hope. Based on everything I told her about how Finn has done over the last week - and especially the last couple of days - and based on her observation of him nursing today as well as a weight check before and after a feeding, she agreed with me that he probably doesn't need to be supplemented anymore! She agreed that his latch is much improved over how it was even a week ago when I first saw her, and he took 3 ounces from nursing while we were in her office today. She had a DS growth chart for me and pointed out that he was in the 5th percentile for weight at birth, and he's in the 5th percentile now, so he's maintaining his growth curve which is what they like to see. I am so happy that our hard work paid off. There was actually a time - many times - that I really feared that this whole breastfeeding thing just wasn't going to work with Finn, but look how far we've come.

She also commented that if she hadn't been told that Finn has DS, she wouldn't have guessed it, and she's apparently worked with quite a few DS babies as a LC. She said it's hard to tell that he has DS just by looking at him, and that most of the DS babies she sees have the hallmark low muscle tone, or "floppiness," and Finn has great muscle tone (all the nurses in the NICU way back when said the same thing). I don't know what to make of all this, but of course it makes me feel hopeful. I asked Michael today, "Do you think it's possible to technically have DS but, practically speaking, not actually manifest it?" Crazy, I know. I'm sure that's being too hopeful and unrealistic, but still.

She talked to me about trying not to obsess so much about his weight and made me promise to try to weigh him only every 2 or 3 days instead of every day. Hmmm . . .

I got a call a couple days ago from our case manager, and she will be coming out to the house this Tuesday with a physical therapist to evaluate Finn and determine what, if any, therapy he might need now. It's hard to imagine that a baby this young could benefit from any type of therapy. To me, he seems to do everything most babies this age do - and more! (he's been rolling over since he was 3 weeks old!) - but what do I know?


nette said...

I have been following yours and Finn's journey since his birth and I think you are doing an absolutely brilliant job. Congrats on the breastfeeding. Well done.
I jsut wanted to say that there is something called Mosaic DS. One of my students had it and he had some aspects of DS but not others. I agree with the LC, all along I have thought that he just doesn't look DS to me.

Carla said...

Well done on the breastfeeding, Lisa! And what do you know? You know how to be a mama, that's what you know. You know it on a gut level and you know it on a practical and experiential level. You are a smart, educated, saavy woman and I have faith in your ability to learn everything there is about DS and be the best mom you can be for him.