Hi everyone! I am so sorry I don't seem to be having the time to update as often as I would like. Please be patient : ) And keep in mind that I also homeschool and I have A LOT of catch up school work after having been gone for almost 6 weeks....I REALLY do not want to be doing school all summer. We also keep having computer problems....a long story....
Anyways, I just wanted to tell you all that I will try to post more pictures very soon. Everyone is doing very well. Julia is coming alive more and more everyday. She is so much more vocal with all the auditory stimulation she has been experiencing with so many kids around her all day. She doesn't talk, but is very vocal with her sweet voice. She is smiling and laughing a lot and seemingly enjoying life all around her. She enjoys the fresh air as we have her outside as much a possible. Spring is such a nice time to be outside. We are continuing to try and get her to drink as many bottles of PediaSure or Carnation Instant Breakfasts a day, but about three 8 oz. bottles is as much as she will take. All of the kids love taking turns feeding Julia her bottles. I have taken pictures of this and will be sure to post them as soon as possible.
Aaron is doing very well too. The language barrier is the most difficult part. He doesn't seem to understand that we don't understand Russian no matter how many times we tell him. He talks and talks and talks like he thinks we will miraculously understand him at some point. We so wish that we could understand all that he has to say. We are managing, but cannot wait until we can communicate better with him. He loves playing with Ethan and Regan. He and our two year old, Evan, butt heads the most. In some ways, mostly socially, they are on the same wave length. Aaron seems to like routine and order, which is good for me. I like order and organization. Once he seems to know what is supposed to happen next, he is ready to go and do. He is eager to be mommy and daddy's helper. His favorite chore to help me with is emptying the washing machine and putting the clothes in the dryer. He even puts the dryer sheets in and LOVES to push the button to turn it on.
We had a drs. appt. for both of them down in Richmond last Friday. The dr. recommends that Aaron see an eye dr. since one and possibly both of his eyes stray off to the sides. Once in a while they align properly together in the front, but not very often. He obviously needs to see a physical therapist and most likely an orthopedic surgeon about his legs. We are hoping and praying that he will be able to walk better someday. He uses his walker, but it is slow and he obviously can't play outside while using it. So he crawls everywhere. Brand new jeans will have a whole in the knees after one wear. I am patching up jeans daily. And when he wears shorts, we are trying to get him to wear knee pads. But he doesn't like them and then the skin on his knees and shins get red and sore.
Anyways, they took 10 viles of blood from each of them, to check for how strong their immunizations took effect and what additional boosters they may need. We had a fresh diaper from Julia for the lab to check for parasites. Aaron is eating very well here and is not a very picky eater. He most certainly understands that he has to finish the food given to him on his plate before he can have dessert.
Julia also saw a geneticist while we were in Richmond. The geneticist thinks that we should back away from zeroing in on her definitely having Cockayne Syndrome. She is not saying that she doesn't have it, but she would rather do a complete genetic panel and look closely at all of her genes to get a better picture of what she may have. She also would like do have some x-rays done to help with a diagnosis. She says that Julia doesn't appear to have cataracts, which is usually a symptom of CS, but she would like her to see an eye dr., just to make sure. She thinks there are definitely some signs that she could have CS, mostly the aging/glossy look of her hands and feet and the texture of her hair. But she says there are many other symptoms that she should/could have that she is not classic for. One thing that I have been told by others who have had CS children is GI issues, typically vomiting. Julia has only vomited once since I have had her and that one time I think was because I overfed her. She weighed 15 lbs. 8 oz. at my local pedicatrician's office, with clothes on. When we were in Richmond, she weighed 17 pounds with the same amount of clothing on. They are different digital scales, so I have no idea if this difference is due to variations between the scales or if there is a possibility that Julia has gained 1 1/2 pounds. It would be nice, but I'll have to wait and get her weighed on the same scale before I get too excited.
Well, I have been all over the map here....but just wanted to give a quick update. Hopefully, in the next few days, we can get more pics up. Stay tuned......