8/03/2007 Olivia's "Last Supper" (before her surgery)

Since Olivia is having surgery Monday, we decided to try and squeeze in a few activities since she will be home bound for 12 weeks.
So she went with Taty and the twins and Jordan to see "Air Bud".
Then we tried to take her to the Myan for dinner since she loves swimming (they have divers that you can watch during your dinner. But the wait was way to long, and they wouldn't take reservations. So we headed over to "Joe's Crab Shack", they have a play center for the kids. Olivia pointed to the spaghetti on the kids menu (a cartoon drawing). Then when her meal came they used different noodles, so she refused to eat it and kept pointing back to the menu.
The kids had fun running and playing.

8/02/2007 First Shriners Appointment

Today was our first appointment with Shriners.

They were so great. Eleana arrived from Ukraine, so we were lucky that she was able to go with us to our appointment as she could translate for us to make sure that our communications were solid with Olivia. She will be helping Olivia with her English and also helping her keep her Russian. She is so sweet and we are grateful that she is willing to help us.

When we got to Shriners we checked in and went straight to X-ray, the doctor wanted the X-rays before we met with him.

Olivia did great, they told her that she was getting her picture taken, so she kept smiling for her “photos”. She didn’t realize it was just her chest and pelvis. I asked the tech if she rated Olivia’s severity of Arthrogryposis on a scale of 1-10 how severe was Olivia’s case. She said she was about 7-8. She said she has seen worst, but also much better. It is nice to finally speak with people so familiar with her condition and has seen so many other children with the same condition.

We then met Olivia’s doctor, who is Dr Roach. He was great. He went over Olivia’s condition with me. Then he checked Olivia out and luckily it seems that she has all her muscles in her legs. Which is great news. He wanted us to go back to X-ray to get X-rays of her arms/hands and feet/knees.

Then we met with Dr Roach again. He said that her hip is out of socket and most likely has been since birth. Basically your hip socket hardens and the socket will no longer “mold” to the ball when placed back in once a child is between 7 and 8 years old. Olivia will be 7 in October. So the hip will have to be the first priority. We are lucky that we were able to get her home when we did, in another 6 months they would not even attempt to repair her hip. (though of course sooner would have been better, the two year process that it took to adopt her will make her outcome not as good as it would have been)

Dr Roach then wanted us to go to the physical therapist to evaluate Olivia and see how well she moved and functioned, so that they could make a treatment plan that wouldn’t take anything away from her.

We went to lunch and Olivia didn’t seem to want anything she ordered, except her banana. (which is typical). We have now been at Shriners since 8:00am and our physical therapy appointment is at 1:00pm.

We spent about one hour in physical therapy, as they watched her play and how she navigated her environment. They commented on how confident she was, and how many children just sit and won’t interact at all there first time. Olivia was all over the place, she was definitely not shy. They were pretty amazed at how well Olivia is doing considering she has had no therapy or medical attention at this point.

We then all met with the doctor so that everyone could give their input based on their expertise.

Based on the limited window to repair her hip that will have to be her first surgery. We asked for when the next available surgery date is, and we were told MONDAY, yes in 4 days. Or we would have to wait until December. Since timing is critical we accepted Monday, three more months could be too late.

They went over the procedure that would be performed… I must say I was a little shocked at how much she will go through. They can not just place her hip back in the socket… since it has been out for her entire life. So they have to remove part of her leg bone so that the hip can slip into place. (about 2 inches) Then they have to remove part of the “socket” and reposition it to keep the ball will stay in the socket and not slip out. They will then screw a plate in place to hold it all together. We will be at Shriners for 3 days after the surgery, so I probably won’t be home until Thursday morning. She will then receive a body cast that she will have on for 6 weeks. At which time they will have to put her under to remove the cast and replace it with a smaller body cast that she will have on for 3-6 more weeks. At which point we will need to begin her foot surgeries.

So our little girl is in for one heck of a roller coaster next week. So please keep her in your prayers.

We will call the hospital psychiatrist to see what we should tell her about the procedure. I believe in 100% honesty, but I also think she is too young for all the details and it might terrify her. So we need to speak with someone that can guide us in the best way to help our daughter through this and how best to explain this to her so that she feels loved and whole as a person. We don’t want to come across that we think something is wrong with her, or don’t love her the way that she is… because we do. But we want her to live the best life possible, and she is so ambitious and wants to do everything, and at this point she just can’t.

Another concern that I have is that in Kazakhstan there is a belief that American’s adopt their children and “sell” their organs. I worry that if our daughter has heard this rumor, and sees that she has a huge incision, that she will worry this is true.

Before we left they marked her legs and had her walk and run several times in front of a camera to see how her legs and bones worked when she walked. She could see herself on the monitor so she would hardly look straight like they wanted her too. She loves seeing herself in the mirror. I think that they seldom get to see themselves at the orphanage. She loves photos of herself too.

We ended up leaving Shriners around 3:00pm. So we were there about 7 hours total. So it made for a LONG day. Plus the reality of what our daughter will be going through Monday is really starting to sink in. She is so independent I don’t know how we will get her through 9-12 weeks of a body cast. Plus her dental surgery is still scheduled for the end of September, I had to call them and inform them that she will be in a body cast to make sure that it won’t be a problem.

I guess the reality of what our daughter is about to go through is hitting hard, she is in for a tough few years. I have stayed so focused on her adoption, and tried not to think about all that she would have to go through. I know it is best for her and I know that being a good parent means making really hard choices… so I pray that I can be the best mom to her through this that I possibly can.

If anyone wants to send her emails or cards I am sure that she would love that, and we can put a little book together for her. Especially if you have adopted a child from Umit, please include a photo.

7/17/007

Olivia is so sweet 95% of the time, but she throws some dozy tantrums when she doesn't get her way. Her behavior and maturity reminds me of about a 1-2 year old, not the 6 1/2 year old she is. However she was the oldest child and the orphanage and in a group with babies, many of which were mentally impaired. I can clearly see she mimics their behavior. We just don't respond to her tantrums, she is immediately put in a time out and they have lessoned substantially since we first brought her home. They are now only 10 minutes or so, when they were initially about a hour or more.

She seems to play more with our twin son Bennett then his twin Bailey. But she is a rough and tumble girl, and Bailey is very feminine and likes to stay clean. So Bennett is more her speed.

We had swimming lessons last week and Olivia LOVES swimming, she wants to jump off the high dive and go down the huge slides... She is definitely fearless. I am glad that she loves swimming as I think that it will be such great therapy for her muscles. Though currently with no arm muscles and very limited use of one of her legs I don't think she will be able to swim alone yet... but hopefully with therapy and practice she will be soon.
Olive also loves getting dressed every morning, she is excited to wear ANYTHING. She also loves having her hair and nails done and loves jewelry. She loves baths and having her hair washed.

She does have to go to the bathroom ALL THE TIME... I think this has to do with the potty training at the orphanage, they put them on the toilet every hour, so I think that she is used to peeing every hour... Ughhh Just in case it is a medical issue we will talk to her doctor about that one.

7/16/2007 Bad Dental News - Accepted to Shriners

We went to the dentist today and learned that she has cavities in all her molars, so that is about $3,000 in dental work, plus the hospital surgery room fee, and anesthesiologists fee. We were expecting all the medical bills, but this is another large expense that we weren't planning on. Hopefully our insurance will pick up most the tab, but this is well above our annual dental limit (per person). So I am not sure what we will be responsible for, and what insurance will cover.

Shriners called and we will have our first doctor appointment on August 2nd. We are so excited to finally speak to a doctor that knows something about her condition, and can give us some idea on what treatment plan we will start and what sort of help or results they expect for Olivia. We are also waiting to get in and get her testing done so that she can start school.

On a good note we just learned that we were accepted to Shriners, which is a HUGE relief. With all her medical needs even the co-pays and our % of the bill can really add up. But even more importantly Olivia's condition is rare and very few doctors have any experience with it. Shriners treats children with her condition all the time, so I know she will get the best treatment there. I don't know what all they will do or cover until we have our first appointment.. But it is still a relief.

7/14/2007 Olivia's English

It is amazing how quickly Olivia is learning English, she says new words every day, sometimes several in a day. She knows all her colors and basic foods (she loves pickles and white bread with butter), she also knows allot of the animals. She also keeps saying "be careful" which is so funny to me with her limited English. She also learned "OWIE" on the plane on the way home since she is so sick.

7/13/2007 Sick since coming home

I have been sick since we have been home.. I constantly feel like I am going to throw up... even thought I never do... I have gone to the urgent care, and then the Emergency Room, and they both ran several tests, but still we haven't found anything technically wrong... so I am trying to get to see a gastrointestinal doctor this week.

7/12/2007 INS Appointment - Certificate of Citizenship

I when to the INS office to try and see how we get PROOF she is a citizen. We were initially told that all we needed to do was show her visa with her stamp and that was proof that she was a citizen. We learned from the social security office that this is not true. Then the INS office informs me that we will need to apply for a certificate of citizenship, which can take 30-45 days AND costs $215 AND we have to bring in 2 passport photos. I personally think that it is ridiculous that we have to pay for proof our daughter is a citizen. We have already paid a small fortune in fees, and paid the INS fees for permission to bring her home, and not we have to pay to PROVE she is a US citizen. It seems that everything is always such a hurdle.

When I got home from the office I called several offices (homeland security, social security, etc), I tried to explain our situation and that we really couldn't wait 30-45 days to get her social security number that we needed it to proceed with other things that our daughter needs to start her care. The social security office told me that if I can get a passport I won't have to get her certificate of citizenship. So I have scheduled an appointment for next week, lets keep our fingers crossed that they will issue a passport.