Saturday, February 16, 2008

Life with Ya Ya










We are almost at our three month mark with Elizabeth Xiao Ya. This is supposedly the time it takes to start feeling like a “normal” family again. This makes me laugh, as our family knows no such word.

Our first three months feel something like a dream. At times it has been emotional, sweet, tender, and loving, just like a scene from the Sound of Music. But some days, and even some weeks, it feels like a scene from a horror movie, full of fear, anger, frustration, and regret. We have had a LOT of horror! Ya Ya has not been easy. She is extremely active (I’d like to use the word hyper) very demanding, destructive, and always, always, always, hungry. This is sad, but difficult to overcome.
It’s certain though that it has taken these three months for me to fall madly in love with my baby. It’s funny how the adoption “love cycle works.” Falling in love with a picture, falling in love with a dream. The beginning of the cycle is fun and exciting, but not based on reality. The reality is a two year old full of their own life experiences.

Ya Ya was referred to Children’s Hospital in Seattle for her small head size, her rather large foot, and the number of café-au-lait spots she has. We left there with more questions, and no answers. She has enough café-au-lait spots to have neurofibromatosis, but a small head size is not typical in NF, and she has no other signs, so this is good. She is considering Beckwith-Wiedemann Syndrome because of Ya Ya’s ear pit (I didn’t even know she had a dang ear pit!), but again Ya Ya doesn’t have many of the features of B.W., like a big tongue. But since this is a possibility she will have abdominal ultrasounds every three months (until she’s seven) and AFP blood work at the same time, due to the very small increased chance of Wilm’s tumor and hepatoblastoma if she does indeed have this or hemi hyperplasia (overgrowth on one side of the body).

What I wasn’t prepared for in the genetics’ report was her referring to Ya Ya as a charming 2 year old with microcephaly. She never said anything like this when we met, so why was I reading this in her report? Isn’t this serious enough to mention? I put a call in to her right away, and thankfully she called me the same day. So…I guess our Ya Ya does indeed have a tiny head, but not to panic as head size does not equal intelligence. She has microcephaly because her head size is so many deviations below such and such, so blah, blah, blah. When I took her to daycare and I compared her to the other kids in her class (all the kids in her class are one year olds.) I really saw that her head is small, but obviously not so small cuz’ I never noticed it before!I was just told that her head is small. Apparently her head is the size of a nine month old. And even if anything were seriously off with our girl it wouldn’t matter at this point, we love her and all her big and small parts. When I look back to February of 2007 when I first got my hands on her file, I thank God at not having her file reviewed by an International Adoption Dr. like we did with Jie Ling. I don’t know why I didn’t have her file looked over, but at the time I thought “why,” what could they possibly tell me that would be so horrible? (well I know why now.) Had Dr. Davies told me that Wang Xiao Ya had microcephaly, and had I researched it, I probably would have scared myself away…honestly I’m sure I would have.

The next day we went back to Children's to see Dr. Mosca who will be performing her foot surgery. Unfortunately he thinks Ya Ya needs a syme's amputation like Jie Ling, but I don't agree. I'm still not convinced that Jie Ling should have lost her foot, and even though we did check out Shriner's, I don't think enough Dr.'s have seen feet like my girls (with three toes and the sole affected.) Shouldn't we first try to keep the foot? My girls' big feet have not bothered them, there is no pain, and Ya Ya is able to wear a shoe on her bigger foot. I don't know, it just seems too radical and permanent, which is why we're waiting on her surgery (among other things.)
I'm looking forward to the next three months with our baby Ya Ya, and also hopeful for more Sound of Music moments!