Thursday, December 9, 2010

Couple of other things about Zoya

My computer time is so limited these days, so I haven't been able to respond individually to all the comments and suggestions and ideas, but I am taking notes and making phone calls and scheduling appointments, and I feel we are slowly but surely coming up with a good plan. Thank you all so much! I will keep you updated.

I wanted to respond to a comment that I got. I know it wasn't meant to be rude but I thought it was an opportunity to explain further about what I meant about Zoya and the possibility of her having FAS.

You mean you didn't know Zoya had FAS?! *I* can tell for crying out loud and all I've seen of her is pictures. She has such a "classic" look to her of a child with FAS. 

We suspected that FAS might have been a possibility long before we even had Zoya's SDA appointment. We had seen photos of her that we had shared with friends, and we knew she had enough facial features that we needed to prepare for the possibility. We asked around and sought out FAS support long before we even adopted her. Just because I never mentioned the FAS before now does not mean we didn't know it was a possibility. I say 'possibility' because it has never been officially diagnosed. I have asked several doctors and none of them have given me a definite answer. Even the orphanage director shrugged his shoulders and admitted that while  some of the physical features were present, and her mother did indeed drink while pregnant, he had personally never seen any other behavioral indicators of FAS. We determined long ago that we would love her, FAS or not, and that is just what we have done and are doing. Mostly I haven't mentioned the possibility of FAS until now because I felt the need to protect her. I didn't and still don't want to put a label on her that will always stay with her. For months I have avoided mentioning it here for this reason until I felt it was becoming a pink elephant in the room. How many of you saw it but were afraid to tell me? :) Then again, some of the features of cleft palate are similar to FAS so it is very hard to say for sure. It's my understanding that FAS is difficult to diagnosis but we plan on seeing a genetic doctor soon and hopefully he will be able to clear up the mystery.

So, if you were worried that we missed something, we have not! We will love Zoya just the same with FAS or without!


A. Gillispie said...

My thought when you posted about the possibility of FAS was that it would seem to be more difficult to determine "just" by looks because of the cleft pallete. I'm glad you confirmed that!

I've got a little one whose mother drank constantly during pregnency, to the point of actually trying to kill herself and her unborn child. Talk about risk factors! But so far so good. Risk doesn't equal syndrome anymore than facial features do. =-)


Melissa said...

***I felt the need to protect her. I didn't and still don't want to put a label on her that will always stay with her.***

(((hugs mama!)))

That's all I wanted to say.

Blessings and My Best


Debbie said...

I'm so glad you adressed that comment. It has bothered me since I read it, don't know exactly sure why. Zoya is such a cutie! I know with all of yall loving her she will be just great!

Anonymous said...

Though the poster said she didn't intend to be rude, some things just don't need to be said.

"You mean you didn't know Zoya had FAS?! *I* can tell for crying out loud and all I've seen of her is pictures. She has such a "classic" look to her of a child with FAS."

I felt like it needed to be followed up with, "And I studied medicine on the internet!"


Anonymous said...

You are my hero. Ever thought of going into the diplomatic core?

I agree with Anonymous -M-

Love Ya!


Stephanie said...

I just assumed that you already suspected it too. Our foster/adopt has a probably dx of FAE. Think FAS I hard to dx.... FAE is nearly impossible! We are on a wait list to take him to the FAS clinic in Kalamazoo mi. When that will be... Who knows!!! I think that slow growth and cleft palates are often seen in kids with FAS too. Our biggest hurdle with FAE is him retaining info. Some days he has it and others it's completely gone like he never learned it to begin with. I have no doubt that you will love zoya... FAS and all!

Melissa Mc said...

FAS never crossed my mind. The only thing I thought when I saw her pictures is "She is a really pretty little girl"

waiting said...

Hi, I wanted to respond to the FAS post. While if there is any mention of alcohol use any day past the 14th day of conception that would then be FAE (fetal alcohol EXPOSURE) and may result if long term through the 9 months exposure and mild physical traits of FAE/FAS, she does not in fact have full blown FAS via just her physical characteristics. She is missing any sign of eye folds, small eye openings, oddly arched eyebrows, a flat nose bridge, a short upturned nose, a thin almost absent upper lip, etc. In fact in those cases Zoya has great detail and does not have any strong FAS indicators. These are extremely evident in the "plug your nose to drink" picture, which looks very normal. As well she is severely underweight so her facial features will grow even more as she gains weight and will look even less FAS than they already do. I would guess any doctor would say she is FAE but would not say she is full blow FAS. FAS kids look like they are squinting threw slanted eye openings and looking up when they are not and they have those very low set ears, high perky short nose on their face, she has nothing like that, she is a stunning little girl. Keep on the pedisure chocolate for TODDLERS, my daughter only gained weight on this, it is the one miracle drink!

waiting said...

You may want to look for a palmer crease and a finger like thumb as well

Anonymous said...

That was me. I made that comment. I really REALLY did NOT mean ANY offense by what I said. I'm sorry that I ruffled so many feathers. I tried to phrase it in a way (obviously I failed miserably) so that I WOULDN'T come across sounding like I *knew* your daughter better than you.
In NO way, shape or form have I EVER had ANY doubts of the love you have of Zoya. I've been reading since before you knew she was going to be a part of your family, and I sniffled back tears of happiness when you brought her home, along with her brother Joseph.
I'm REALLY sorry that I gave the impression that you wouldn't care about her as much if she didn't have FAS.
When I said I thought she had the classic signs of FAS, I SHOULD have said compared to my 3 cousins (all adopted) who also have it. And I most certainly didn't mean that She was In ANY way unattractive. I also stated in a "PS" comment that I think Zoya is adorable. And I really mean that. Regardless of what she has or doesn't have. She's a cute kid!

I'm not a horrible uncaring insensitive cow. I used poor judgment in my choice of words. And I am truly sorry.

Take care,

~*Brittany*~ said...

I didn't think it really. What I see now looks to me like it could be from her Cleft, I have seen so many kids with "classic FAS" and I don't think Zoya's is that. One of the main things I noticed was her nasal bridge isn't flat...I don't know I adore Zoya. And tell everyone about this little Ukranian Princess, so maybe I just didn't care.

Charissa said...

Alison, I knew how you meant it and I was not offended. I just thought it gave me a chance to clarify our thought process about the FAS. Please don't feel bad. Thanks for your comment.

Jo's Corner said...

This is my opinion...but, I wonder how many adults are walking around with undiagnosed FAS? I wonder about myself. FAS was not even a known diagnosis 30 years ago. Why add another label to Zoya? She is a Little Girl! A Beautiful Little Girl who is Perfect in the Eyes of her Maker! And, in mine!! I Pray that whatever "issues" she has to face in life, will come to her through the Love of her wonderful family, Wisdom of trained, skilled specialist and Healing from Our Lord!
Hug your Perfect Daughter for me! Heck..Hug ALL of your Perfect Children for me! Love ~ Jo

Lisa (DanielsMommy) said...

Zoya is such a dainty pink princess and and I just went back and read about how you came to meet her. I originally started following your blog because of Joseph...but I am also so in love with Zoya...the Ukrainian Princess. You'll find what works for her Momma!!

Christine said...

You go girl! FAS is not a death sentence. Remind people that FAS in on a spectrum and that a child doesn't have to all of the behaviors. Zoya is such a sweetie even if she has FAS. Our daughter with FAS has been home for over five years and she is doing amazing!

jennifer... said...

Dern. I had a really clever comment that I now have to omit thanks to that very sincere apology from your commenter. :)