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.