Christmas 2010

I guess a few people noticed that my blog went private for a few days. Every now it is nice to have one's privacy and I appreciated one commenter who said that no explanation was necessary. Just know that we are all well and the blog is open again. I did enjoy hearing from people knowing we were missed. :) One person emailed me and said she had been logging in to check on Zoya's progress, and felt like she was watching The Truman Show, rooting for him as he escaped the bubble. haha. That comment inspired me to rent the movie for family movie night last night. What a great movie. Totally worth watching a second time, twelve years later, with the family.

BTW, Zoya is wonderful! The G-tube is my new best friend and definitely a help in the family bonding department. I haven't been terribly consistent about weighing her but I know she has gained at least a pound and a half since we came home from the hospital. That is my girl!

We had an absolutely wonderful Christmas! Here are a couple of random photos from the last couple of weeks (Gosh it's been a while since I've blogged!)

I love that my almost-teenager, who is starting to get peach fuzz on his upper lip, is still a good sport about sitting on Santa Claus' lap for this mama to take his picture.

Man that is a lot of Christmas stockings!

The absolute highlight of our Christmas was getting to spend a few days with our dearest friends, the Koens. They came all the way from South Africa and we were so honored to have them all to ourselves  at Christmas time. What a blessing to celebrate with them and their sweet family. We love them dearly and feel their love as well.

As we anticipated, Joseph was far more fascinated with the wrapping paper than the little red motorcyle we bought him. We hoped that this gift would stop him from wearing the motorcycle helmet around the house, tugging on shirt sleeves and pant legs, asking for rides on the dirt bike.

As you can see, our plan didn't work!

Liesel is the most intuitive and observant person in the family, and by far the best gift giver. She puts a lot of thought into gift-giving (unlike me who would rather wax my own eyebrows than go Christmas shopping), and even invested her own money in making a lot of little Christmas wishes come true. Who knew a purple unicorn pillow pet would bring such joy to a little 6 year old sister!

 Zoya was all smiles on Christmas morning. I learned through her broken English and speech impediment that Santa Claus did indeed come visit the orphanage, but he didn't bring toys, only lots and lots of candy. Every time someone asked her what she wanted for Christmas, her answer every time was "candy". She got much more than candy this year and it was so fun to see her enjoying her first Christmas with a real family. Precious.

More photos from our time with the Koens...

The boys got a cricket set from South Africa, and they had a blast learning to play cricket together. It really does look like a lot of fun although with all the sweets I ate over the holidays I couldn't imagine getting out there and playing with them!

Zoya absolutely LOVED Tina, and cried when she left. I think Tina needs a little girl of her own. Thank goodness for Skype to keep these two connected, because Zoya will certainly go through Tina-withdrawals otherwise.

The boys got some fake rubber cockroaches in their Christmas stockings. Let me just say there is nothing more fun than hiding a fake roach under your guest's pumpkin crisp, and watching their expression when they find it.

Thankful for good-natured friends that can take a joke. Of course I should have known that Frikkie would use it as an opportunity to gross us all out, telling us he eats giant cockroaches all the time in Africa. Check out Hope's expression. Ha!

Hoping you all had a wonderful Christmas celebrating our Saviour.  Wishing you all a Happy 2011 as well. We truly have been so blessed.

We are home and doing well

Whew! We got back from Little Rock late Wednesday night and I've been exhausted. So much to do, especially this time of year. I am apologizing in advance that nobody will be receiving any Christmas cards from the Urbans this year. It was a fleeting, momentary thought, but it just ain't gonna happen. Not this year.

 I just have to say how impressed I was with the facility at Arkansas Children's Hospital, the doctors, the nurses, and just the overall care we received there. There was one minor uh-oh moment, when we were first admitted. The nurse looked at the chart and asked if Zoya had any other chronic health conditions other than cystic fibrosis. "Cystic Fibrosis??!! Ummmm....No, definitely not that. Next day I realized that her hospital band said "C F" next to her name.....caucasian female.....haha. Minor oops there!

Otherwise we were really happy with everybody and everything there. I was so glad I took Jude along. He was a tremendous help. John and the others held down the fort at home. Thanks to the Lorraines for letting us stay the night with them. Love their beautiful family.

On Monday we saw the whole cleft palate team. Everybody agreed that a feeding tube was necessary at this point. Below is a picture showing where she plots on the growth chart. As you can see she is way below the normal range for both her height and weight. In a little over four months she has gone from...and these numbers are fully clothed.... 21.5 pounds to a current 22.8 pounds. This is an average weight for an 18 month old baby. In order to even be in the bottom 3rd percentile for her age, she needs to gain at least 8 more pounds. Can you see the little dots that look a little bit like ants? That is the teeny tiny bit of progress we made at home these last few months-----the product of many mealtimes full of tears and tantrums. Sigh.

Anyhow.....she was scheduled for surgery the next day and now has a wonderful, glorious feeding tube!! I never thought I would be so happy and relieved about a surgical procedure as this!

The geneticist pretty much took one look at her and said his first guess is that she has fetal alcohol syndrome. With her history, and some of her facial features it was his best guess. Now there is no test to diagnose this, so basically everything else must ruled out before knowing for sure. Blood was drawn to test for multiple genetic and hormonal abnormalities. We will not have any definite answers for 6-8 weeks on that, so for now she has been diagnosed with FAS. 

Now. Obviously this was very, very hard for me to hear. I mean, I was prepared for this but oh-how-I-hoped it wasn't true. For so many reasons. For one, FAS can affect so many areas in a child's life...relationships, behavior, mental and physical development. FAS is kind of an 'invisible' disability. Where it is just expected that kids with obvious disabilities, like Down Syndrome will have delays, kids with FAS are expected to function normally in their society.  All of these thoughts have gone through my mind as we are thinking about her future.

Mostly the reason why I didn't want to accept the FAS diagnosis is because having that 'label' on her is a constant reminder that every single one of her issues, her struggles, is a direct result of being born to a mother who abused her own fetus with drugs and alcohol. FAS would explain the prematurity, the cleft palate, her smallness, as well as the anorexia. The geneticist explained that many times these children are literally born premature just to save themselves from the alcohol. How sad is that.....Makes me tear up just to think about it......Zoya being born 13 weeks early weighing less than two pounds.....to save her own life.

Anyway, it is what it is and it doesn't change a thing about how we feel about her or how much we love her. I just hate having the word "alcohol" having any association with any of my children, so now when we refer to Zoya as having FAS, let it be known that from now on, in our house, it means "Family Adores-her Syndrome". :)

Here is Nurse Emily, the amazing cleft palate coordinator nurse of Arkansas Children's Hospital. She was singlehandedly responsible for getting us short-notice appointments with  a pediatric surgeon, a speech therapist, an audiologist, a dentist, an ENT, the cleft palate surgeon, a speech therapist, a nutritionist, and a geneticist and an HIV specialist. (I guess I might as well go ahead and say it since it is probably obvious at this point.) Emily was so great to work with and Zoya loved her. Zoya loved Emily's surgery hat so much, that Emily brought one for her the very next day. How sweet.

Here is my girl, waking up from surgery, sporting a new Mickey button. Her daddy calls it her tummy port. She really is the best little patient. Doctors are always amazed at how cooperative she is. By the way, while she was under anesthesia she got several cavities filled and her ears all cleaned out. 99% of patients with cleft palates need ear tubes but she has apparently outgrown her need for them, because a thorough examination by the ENT revealed her ears are clear and no surgery was needed. PTL.

I had to take this picture of Zoya talking to Simeon on the phone post-surgery. She was too sore to talk but she nodded her head and did sign language. She is telling him "I love you." :)

We are in full swing with feeds now. She is getting 4 cans of Pediasure per day, through her tube, plus whatever else she is able to take by mouth. It makes my happy maternal hormones flow to see the milk going through the tube and making her little abdomen protrude a little, just as it should have been all along. It is music to my ears to hear her say 'more milk'.

By the way, the best news of all is this: The cleft palate surgeon, Dr. Buckmiller, has scheduled a cleft repair for THIS COMING APRIL. She totally disagreed with the previous surgeon who said there wasn't enough tissue for the repair. Dr. Buckmiller said after a few months of solid nourishment under her belt she will be ready for surgery. The speech therapist was also encouraged about the potential she will have after it is repaired. I don't think we will have to go to Dallas after all.

For a point of reference, here is a photo of little Zoya the first day we saw her across the courtyard at the orphanage. She was waiting her turn to take a bath in the kiddie pool. This is the little girl that we fell in love with. We vowed to get her healthy and to help her reach her fullest potential, We have sure tried our darnedest but now finally feel that we are on the right track. Pray with us that she will be plump and healthy soon!

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'.