Julia's first haircut

Good afternoon!  So I was just finishing up giving Julia a bath, getting her dressed and combing her hair and I came to the decision that the bangs NEEDED to be cut!  Trying to pull all of her bangs back into a hair tie or clipping to the side was not working.  The ties/clips fall out and then I am afraid she will choke on them lying around her.  And her hair in front is always in her face and looks very "bed head." Her hair, from the cowlick on top of her head, always wants to fall forward.  So I thought it might be easier to comb some of the hair to the front, cut them across and try to train the rest to clip to the side.  Here are the pictures of the end result.  BTW, this is the first time since her surgery that she has been in the exersaucer.  She has definitely missed it!

Julia's New Do

Just a quick update on Julia and Aaron.  Julia had surgery last Monday to put in her permanent GI tube.  She came home last Thursday and is healing and doing very well.  It is wonderful to not have that NG tube taped to her face all the time and I am sure she is more comfortable not having a tube down her nose and throat!   Her hair is slowly getting longer.  It's hard to decide what to do with it.  She is still most comfortable and happy laying down.  Unfortunately, this is conducive to messy, matted hair!  I guess this picture below shows my first attempt at keeping her growing bangs out of her face without having to cut them.  We'll see how it goes......

Aaron and I are taking a trip up to Philadelphia this coming Monday afternoon.  We will stay over up there and his evaluation by the pediatric orthopedic center at Shriner's is on Tuesday, August 23.   The following Monday he has outpatient surgery to straighten his eyes.

On top of all of this, I am in the process of getting everything ready for this next school year.  Kacey and I started 7th grade as of today and Ethan will be starting 2nd grade as soon as I can get his curriculum organized and ready to go.  As I have mentioned before,  Aaron and Regan are going to attend 4 year old preschool at our church, which thankfully doesn't start until after Labor Day weekend.  This will be three (MWF) mornings a week......we are sure they are both going to enjoy this!

2 Days at the Beach!



Regan

Aaron and Uncle Ricky

Aaron

Bathing beauty(in the shade of course!)

Evan

Uncle Curt, Uncle Bret, Steve, Carey, Uncle Ricky and Aunt Laura

Ethan

Kacey

Enjoying summer!

Oh my goodness.....things have finally started to slow down so we can enjoy summer! It has been a crazy, busy last couple of months with finishing school, winding down on school year activities, and many doctors appointments. First of all, we want to say that Julia and Aaron are doing wonderfully, better than anyone could have ever expected : ) I know so many of you who follow our blog are itching for an update, so here goes!

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....

.....getting seated.....

......and down he goes!!

Aaron's first dentist appointment.

Jody and Aaron

Camping and Kings Dominion

Yesterday Julia had a follow up appointment with her GI doctor.  She weighed a whopping 20 pounds!!  That's 4 1/2 pounds since we got her home....praise the Lord : )  She has another appt. in a month, at which point they will look at scheduling her to get a GI tube placed.   We have finally gotten them on our health insurance.  We are looking forward to getting Julia some glasses and scheduling Aaron's botox injections to help straighten his eyes.  Now that we have gotten over the major hurdle with Julia's severe malnutrition, we are going to start getting Aaron the orthopedic appts. to see what steps we can take to help him walk better.

We have been busy trying to finish up school with our oldest daughter, Kacey.  Unfortunately, I will be doing school with Ethan probably until the end of July.  He was basically without school while I was gone for 6 weeks.  Kacey had her Spring Dance show this passed weekend.  But dance is not over for the year.  She is finding out any day whether her teachers think she is ready to go on point in ballet.  This means ballet classes for most of the summer.  Regan's preschool has ended for the summer. 

I'm so wanting things to wind down and calm down, but with 6 kids, even if the running around ends....the craziness at home does not!  Evan, our two year old is still, by far, having the hardest time adjusting to 2 new siblings.  He still wants so much mommy time and there is just not enough of me to go around.  I need prayers for patience and for peace in not getting everything accomplished as quickly as I would like to.  Many days I feel like I have very little time to sit back and enjoy these 6 blessings, besides taking care of their physical needs and keeping the house running smoothly.  It is quite a challenge.....a challenge that I knew I was facing, but being so wrapped up in all the adoption paperwork and travel, I could never have fully anticipated or processed how much of an adjustment this would be in all areas of our lives.  But when we can see the noticeable weight gain in Julia or watch her roll over to her tummy and get on all fours or hear Aaron speak more and more English everyday or delight in his squeals of laughter on an amusement park ride......it makes it all worth it.  God is good and will sustain us!

Here are some pictures of our camping trip two weekends ago and Kings Dominion yesterday:

Julia getting breakfast

Daddy frying bacon for our breakfast

Kacey and her best friend Sarah setting table while Evan waits to eat

Regan, Evan and Ethan romping around with Julia just before bed

Julia, Evan, and Ethan

Julia on her tummy!

She is so proud of her new energy and strength!

Ethan and Evan at Kings Dominion

Regan and Aaron at Kings Dominion