Sawyer is 18 months olds! Can you believe it? THIS is by far my favorite age so far. She is sassy in the best way possible, she is walking, practically running, saying over 20 words, and just growing up so much.
Her current favorite words are "uh-oh", "UP!" and "bite". As soon as you walk in the kitchen and pull something out of the pantry or fridge, she comes at you with mouth open saying "bite. bite." She has a tendency to purposefully throw things down then say "uh-oh"" and when she is in a hurry to get somewhere she comes to you and says "UP" then points in the direction she'd like you to go.
She loves brushing her teeth, but especially with my toothbrush. (Don't even know) She loves climbing up the stairs, but would prefer a ride back down. Still ADORES being outside and splashing in water. And she LOVES her da-da! They have so much fun with each other these days! And Nelly...she's right up there with da-da. ;)
Now that she is becoming more assertive and going up to other kids, we have started getting questions---most often regarding her different eyes. Kids are amazing in what they notice and innocently ask questions about. So far, each child has been completely curious and not at all mean about anything. A little boy at the play gym said "hey, why does she have one little eye and one big eye?" And I just said that she was born with special eyes. His response "Cool. I have two big eyes." And resumed playing. Cool.
Even parents have been great when their kids ask questions and just respond about how we're all different. That works for me, too. Usually adults are more curious about her hands and ask what happened, especially when they notice the scars. I know there will be times when I won't feel so positive about certain interactions, but these first ones have given me hope.
Last time we left off was with Sawyer's diagnosis. Since then I have continued to read every last available piece of information regarding this syndrome. While I still have quite a few questions, despite my deliberation with e-mailing geneticists, I'm afraid those questions may not have answers at this time and we'll just continue on with the "wait and see" approach. We did visit with a new geneticist at TCH (unfortunately our first left the practice) and while he was very kind, he wasn't very familiar with Focal Dermal Hypoplasia (FDH) and was not able to give me any more information than I already knew from just reading the literature. We will go back in a year for a follow up, but next time be meeting with a different geneticist, who has a special interest in FDH and even completed a research study about it. (And yes, I already e-mailed him with questions.)
Next, we followed up with her hand surgeon. We've lucked out with getting one of his first appointments of the afternoon the past few times, so rather than wait 2 1/2 hours, we only had to wait 45 minutes last time! He was so pleased with how her little hands had healed and how she was using them. Originally he discussed needing a second surgery for both of her hands, however, we both agreed that holding off on her left hand was the best course of action. At this point she is still not fully bending her left two fingers at the middle knuckle joint (likely do to tendon insertion), but since she is still so small and not growing very quickly, he thought it best to wait until she was older (and bigger) before trying to work with the tiny nerves and tendons again.
Her right hand does need surgery though to close the cleft and bring the 2nd and 3rd digit closer together, as well as straighten the 2nd digit. I went into the appointment prepared to argue my case for waiting until next year to do surgery (thinking we were going to be doing one on both of her hands), he heard my case, I heard his, and we negotiated and settled on having the surgery done in the Fall. So thankful for such a brilliant doctor who will actually listen to my concerns and be willing to meet me halfway. We haven't scheduled this surgery yet but plan to go back in July to put it in the books.
Moving on. We met with the pediatric orthopedic specialist here in Austin for her feet this week and despite Sawyer melting down and trembling with fear, he was able to see her walking and had nothing but good things to say. Her feet are functioning just as he hoped and he did not recommend any special inserts at this point, especially since she mainly wears soft soled moccasins. We will just follow up again in 6 months. Surgery on her right foot is not completely off the table, but likely not until closer to age 4.
love,
Team Sawyer
