First......in the picture below, look how full Julia's face is!!! Yesterday at a doctor's appointment she weighed 23 lbs. 7 oz. That's right.....the starving little 15 lb. 8 oz. girl has put on 8 pounds in 2 1/2 months!
By far, the most common question I get is: "So, do they know if she has Cockayne Syndrome?" As of now, we still do not have any conclusive diagnosis. Genetics at MCV is still working on it. I have been on the phone with the genetic counselor a couple of times and they have some information, but the lab is not finished with their study and have not come to a conclusive diagnosis yet. At this point, I need to provide them with some more blood sample from her for them to complete their study. All I will say for now, is that what they have so far, is leading them to believe it is not Cockayne Syndrome, but possibly something mimicking some CS symptoms. I am going to hold off on any more details until they have completed their study. Regardless of any diagnosis, she will be treated symptomatically. Last week, Julia had an appointment with the GI doctor and he says she is strong enough for the surgery to put in a permanent GI tube. Yesterday's appointment was a consultation with the doctor who will be doing the laparoscopic surgery. It is scheduled for Monday, Aug. 8. Please pray for our sweet, big girl on that day. She will be in the hospital for a couple of days, provided she is tolerating the feeds well. It's a long story, but even though she was taking bottles pretty well for the first few weeks we had here home, she at some point just stopped. We have tried to reintroduce bottles periodically and she refuses them. And soft foods like applesauce and yogurt cause her to throw up. It really is not fun trying to get her to eat or drink a bottle. She has had enough struggles in her life. She doesn't need to get stressed out over eating. It is not her digestive system that is the problem....she is metabolizing food wonderfully as it gets pumped into her by her NG tube. She just won't drink out of a bottle anymore.
The important thing is that she is feeling better, gaining weight and getting loved. She is getting stronger and stronger all the time. When we first came home she couldn't even roll over onto her tummy from her back. Now she can roll to her tummy and get herself up on all fours. It's hard to get a picture of her in the act of doing this. Every time she gets herself on all fours I never seem to have my camera handy. By the time I run and get it, she has already rolled over to her back. And just like a baby, when you attempt to repose them, it is never successful. The pics below are the best we have been able to get so far. She doesn't go anywhere (yet!), but she rocks on her haunches and has moved her hand forward one step before flopping over to her back. She has always been strong, even when she was a starving 15 pounds. We were always amazed what she could do physically with so little nourishment. The doctors were not even sure how she was still alive. But now with 8 more pounds on her, she is trying to do more and more. First we started noticing that she would try to pull herself up to sitting position in her reclining seat. She grabbed hold of the toy bar and would pull herself up. So we decided to get her an exersaucer. She loves this. Now that she has padding over her tail bone and is able to sit more upright, we also bought her a high chair so she can sit with us at meals.
Julia also LOVES the pool. This surprised us as she is not too fond of her baths and she is extremely sensitive to sunlight. But 4th of July weekend we put her sunglasses on and took her out to the pool late in the afternoon when there was some shade. She had a blast! She was kicking and moving about and laughing!! I think I had her out in the water for a good hour. Water therapy : ) Then a couple of days ago we had her out in a floaty thing and she was intentionally putting her whole face in water. At first, I was nervous about it, so I kept trying to stop her from dunking her face. I also was not sure if she was doing it intentionally or not. But she kept throwing herself forward and I eventually just let her. She WAS clearly doing it on purpose and was loving it! When she came up out of the water, she was squealing with delight and went back to dunking her face in again. All the while, she is kicking and moving her legs around underneath the float. It was so cute!!
Now for Aaron......he is doing fantastic! He is so happy and has such a great sense of humor. He is about 50/50 now with his Russian and English. At first it seemed like the improvements were so slow. It amazes me how much he improves everyday. The communication barrier that was such a frustration in the beginning, has virtually disappeared. Part of the adjustment for him was learning the routine and expectations of things around here. Since he knows "what comes next" it makes it easier to give him instructions and expect him to accomplish what he is told to do. He is very cooperative and obedient. Although, he has started asking me "Why?" when I tell him things. No doubt he picked that from the other kids. Another bad habit he has picked up is bossing his siblings around. He has learned that from his new siblings as well. So when they get annoyed by it, I just have to point out that he learned it from them. When he does something wrong to one of his brothers or sisters, all I have to do is give him a look, and he quickly looks to the offended party and says "Sorry." He is very good about cleaning up toys when told to do so. He eats very well, but still chews very slowly if it's something that's not soft and mushy. He has the most trouble with meats like chicken breasts or pork chops. If he doesn't like something nowadays, he lets me know and indicates that he doesn't want to finish his plate, by pushing it away and making a yucky face. All I have to do is tell him that he doesn't have to eat it, but if he doesn't he won't get dessert. I then put whatever dessert we are having right in front of him and instantly he wolfs down whatever it is he didn't like without any problems. He enjoys our nightly devotions. He knows all the words to "Jesus Loves Me" and our bedtime prayer. He has been going to Sunday school without either of us with him and is doing fine. He spent a week going to Vacation Bible School at our church. This was his first organized activity with other kids outside of our family. He loved every minute of it. His favorite activities around here are playing in the backyard (sandbox) and swimming in the pool. He asks me every morning, "Pool? Bathing suit?" He goes under water and can hold his breath for short periods of time. He likes to climb up the pool ladder and then flop back into the water with a big splash. He also enjoys going down the kiddie slide. There are some pictures of this down below. Because his lower body is still so stiff and rigid, he always lands in the water with his whole body in the shape of a banana. He lands on his back every time. It doesn't seem to bother him, as he comes up out of the water with that big smile on his face.
For the rest of this summer, we have several medical appointments for him. He has seen a pediatric ophthalmologist twice and right now we are waiting to hear when they have his botox injections scheduled to straighten his eyes. This should be in the next few weeks. We also have an appointment up at Shriner's in Philadelphia on Aug. 23rd to have him evaluated by their pediatric orthopedic center. We were kind of glad this wasn't able to be scheduled until closer to the end of summer. If he has to have surgery, we didn't want him to be unable to play in the pool his first summer here.
For the fall, we have him registered to attend our church's 4 year old preschool program with his sister Regan. Holding him back academically 2 years will give him some more time to learn English. We felt he would benefit from this, as children from orphanages typically display varying degrees of developmental delays. He seems to be very intelligent, but there are no doubt social delays and he is small in size for his age. He is only a little bit bigger than Regan, who is 4 years old.
|Evan, Ethan, and Aaron.....the boys!|
|Buddies.....sometimes : )|
|Up the ladder....|
|......and down he goes!!|
|Aaron's first dentist appointment.|
|Jody and Aaron|