Back to Little Rock with Zoya

Just wanted to quickly update. Tomorrow (Monday) we were able to get in to see a team of specialists in Little Rock for Zoya. I am praying we will finally have some answers soon. We may eventually go to Dallas for her cleft palate surgery, but I couldn't pass up the opportunity when it presented itself, to see a geneticist, nutritionist, surgeon, dentist and speech therapist, in addition to the craniofacial specialist, all on the same day. Thanks for your prayers, and I will post updates as I can.

Christmas Recital-Jude and Liesel :)

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!

More about Zoya

Thanks to everyone who offered suggestions and encouragement about Zoya. The lesson to be learned is that sometimes it can be a blessing in disguise to admit your failures and ask for help. I was overwhelmed with comments and even private emails after my last post. I made some phone calls this morning and we have made a little bit of progress today. First of all we now have a prescription for Periactin, an appetite stimulant. Second, I am working with our insurance company to get a consultation with a dietician. (Meanwhile I have taken your suggestions to heart and am trying some new things at mealtimes and snacktimes). Third and most importantly, I am expecting a return phone call tomorrow from a nurse at the Craniofacial Center in Dallas. I had a lengthy conversation with her today about all of Zoya's issues and how every problem seems to be dependent on another. She was pretty confident Dr. Fearon could get her fixed up sooner rather than later. This was music to my ears! The Center works through a team approach, which means we would be able to see all kinds of specialists on the same day....a geneticist, a dietician, a gastroenterologist, an orthodontist, and a speech therapist. We are also suspicious that Zoya may have fetal alcohol syndrome. It would be nice to be able to diagnose this at the same time so that we can get her all the help she needs. The receptionist had said the first available appointment would be in about 2 1/2 months, but they felt they could squeeze us in sooner. Dallas is about 4-5 hours away but it would be well worth the drive if we could get some help soon!

I will never forget the first day we saw Zoya at the orphanage. She was getting her outdoor 'bath' in the kiddy pool, all the kids were naked. I remember how shocked I was to see every one of her ribs and her shoulder blades sticking out like a victim of the holocaust. My mother's heart went out with compassion to her, and I remember thinking how I couldn't wait to get her home and give her a real bath and real meals, and how quickly she would fatten up once I was her mother! Needless to say, I am disappointed. I am not disappointed in her, but I have just felt like a big failure in this area. All of my other kids love my cooking, and frequently want more, more. And this is good for a mother's heart. But constantly seeing Zoya turning nose up and pushing the food away, has been so hard for me. Especially after I have worked so hard to add the butter, the oil, the ranch dressing, the cream, or whatever, to increase calories for her. And then having to throw all my hard work in the trash. Ugh! Not to mention the fact that I JUST DON'T HAVE an hour every single meal to spoon feed her and play airplanes and praise her for every nibble that she takes. One night John very firmly required her to stay at the table long after everyone else had gone to bed, made her eat every bite on her plate. That night she ended up barfing it all up. I am here to say that is hard on the bonding between mother (and father) and child. So I am praying the Periactin will do the trick, OR that she will soon have a feeding tube......not just for Zoya's physical health but for my emotional health as well.

Random family updates.

The four youngest are in bed asleep and John and the three oldest are in the barn working on the benches for the table. Very soon I won't be tripping over the 10 dining room chairs that end up in all kinds of weird positions around the table. (And Ava will no longer be able to tip the chairs over just to hear the loud sound it makes, yay) I just sent hot chocolate down to the barn for the boys, with Liesel. The house is so quiet, I didn't know what to do with myself. I guess it's as good a time as any to write a quick family update.

Jude and Liesel did great on their piano and guitar recital yesterday. John got it on video, I'll try to see if I can get it off his camera and post it. They have really found their little musical niche and it's fun that they can do it together, and it doesn't require a lot of driving around and being too many places as was the case when they were in soccer. Family activities have slowed down significantly and we have spent a lot more time at HOME since Joseph and Zoya came home and I'm starting to think that maybe that is how it is supposed to be. Truth be told I am LOVING not being involved in any sports at the moment. Although I realize that Simeon needs an outlet or he tends to be moody, fidgety, and destructive. I am thinking maybe football. There is a homeschool football group here locally that I think we'll check out for next year. Unfortunately homeschoolers in our state do not have the privilege of participating in public school sports as is an option in many other states. By the way, Simeon is doing so much better academically. Amazing what a pair of reading glasses can do!

Joseph is loving school! Sometimes on weekends he carries his backpack around the house signing 'school'. We are driving down the road and he sees a school bus, he goes nuts. His teacher says he is doing great, although we did get a note sent home last week that he was taking his clothes off, running around disobediently and hitting his teachers. :( I think his bad behavior was from staying up late the night before because for the most part he has gotten excellent progress reports. He insists on eating in the cafeteria, his teacher says. And when I pick him up from the bus stop he always...I mean always......tries to climb up into the bus driver's seat. It is obvious how badly he wants to drive that big bus. When I went to eat lunch with Hope the other day he waved at me from across the cafeteria, and nudged his aide and pointed to me, as if to say, "Hey, that's my mom.". Then he did his own little sign for 'hot' and gave me the thumbs up. So cute. Hope and I joined him at his table for the second half of lunch.

Zoya. Oh my dear Zoya. If anything is causing me anxiety right now it is my little Zoya. The more she gets to know us the more she refuses to eat. The one pound we all worked so hard for her to gain, she has lost again. She has produced a lot of different weights on a lot of scales, but my scale here at home says she weighs 20.5 pounds. She will be six years old in 3 weeks. When she isn't wearing clothes, she (still) looks like a walking skeleton to me. I can' t get her to eat most meals. I work and work to add calories to her food, but most of her meals just go to waste. I have discovered that she loves coffee. So I add Pediasure to it. She loves vegetables and salads, which I would love for any other kid except that she will not gain weight eating vegetables and salads. Ugh!! I have asked several doctors to consider placing a feeding tube in her. The doctors who can actually make the decision say it is not a medical necessity because she can eat. But being able to eat and actually eating are two different things. We have gone around and around from specialist to specialist trying to figure little Zoya and her problems out. We have been to 3 different oral/dental specialists trying to figure out a temporary solution for her cleft palate, until we can get her healthy enough for surgery. But nobody seems to know what to do with her. The Shriners/cleft hospital in Houston are apparently only taking babies at this time. So it looks like we will be seeking answers out of state for her. Probably back to Little Rock? Can we come see you Lorraine family??? :)

Ava is still loving The Little Lighthouse. We think she regressed a little bit, either while we were in Ukraine for so long, or since bringing two new strangers into our house. But she is starting to respond more to Joseph and to Zoya and it's fun to watch them all trying to nurture and take care of each other. I love that! Ava is picking up some habits, both good and bad, from Joseph, and vice versa. Hmmmm.

Hope has asked me to come help out in her kindergarten classroom. Zoya starts school at the beginning of the year (probably). I'm going to ask the school counselor if my big kids and I can volunteer once a week or so, tutoring or cafeteria duty, or something. Wouldn't that be fun? I did read to the kindergarten class one day a couple of weeks ago and always have fun hanging out with the kids at lunch time.

And John. How many times in a day do I think to myself how lucky I am. Who else would have traveled across the world and taken that risk with me, the risk of 'ruining our family' bringing all these little special little kids into our family. I am so glad he said yes. Yes we are busy. Oh so busy! Some days we hardly have a chance to say a word to each other all day, but somehow we make up for it here and there and after the kids are in bed. (And we still hold hands in church and in the front seat of our 12 passenger van with all the various sounds and activities going on behind us!) I feel so lucky, and I wouldn't trade places with any other woman in the world.

Antonio

Our family is sponsoring Reece's Rainbow's "Antonio" for the Angel Tree this Christmas. Who are you sponsoring???

Fun times at the Urban household

On Thanksgiving night, while we were out of town, we got a text from our babysitter/dogsitter saying that our dogs had disappeared from the yard. For several nights we worried and wondered where they might be. How sad we were to come home to an empty house with no wagging tails or wet noses to greet us. We put ads on Craigslist and called the local shelter. The dogs were not found for several days.

But I am happy to report it was a Homeward Bound ending, and both dogs are now safely home, thanks to a nice lady who found them wandering at a local business and took them home. She kept them all through the holidays and then called the vet's number on the rabies tag, which is how we finally located them. Needless to say we are so thankful for a happy ending.

We have an interesting dilemma----Nelly has gone into heat (which apparently triggered the sudden exploring) while Luke is a 'teenage' puppy with raging hormones. Fun times at the Urban house. Would you like to be a fly on our wall watching me and 7 kids trying to keep the dogs apart and the neighbor male dogs away. Interesting indeed.

Meanwhile I finally got around to scheduling them both for spaying/neuturing.

What do they call a cross between a Chesapeake Bay Retriever and a Labradoodle? John says a 'Chesa-doodle'.