Family Pic Nov 2015

Family Pic Nov 2015

Thursday, July 21, 2011

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

35 comments:

  1. Your post got me smiling the whole way... Julia is an adorable little munchkin! :) And it is so wonderful to see Aaron settling in.

    Thank you for sharing update with us, I loved seeing Julia's face being filled in!!! May she continue to be strengthened.

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  2. Wow, great job! The kids are looking great. Julia's hair getting longer looks nice too.

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  3. Thank you for sharing your beautiful family! How wonderful to see everyone doing so well! And Julia, I could hardly believe my eyes! That sweet round face and cheeks, yay!!!

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  4. God Bless!! I am so glad to hear an update on the children. Hope you have a great rest of the summer.

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  5. Amazing! Julia looks like a totally different little girl! I can't believe how much she has changed! It's also amazing what the power of love and nourishment will do for a child! So wonderful to see!

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  6. Oh she has such a beautiful face that glows and all that gorgeous blonde hair! So glad to see how well they are adapting with lots of lovin'!

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  7. I was wondering how the two kiddos were doing. They sure look happy and good. Julia looks amazing. God is truly wonderful.

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  8. Oh my goodness, Julia looks beautiful!!

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  9. Wow!! Julia looks amazing. What a blessing to see her thriving!

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  10. Good to hear from ya'll again!! My, Julia is getting quite chunky!!!

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  11. I'm so glad that they are both doing so well! :) I can't believe how much they have grown and wonderful Julia looks! Thanks for the update!

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  12. Oh, my heart!! wow, that first picture of Julia is stunning.... she radiates the love that you all have given her!

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  13. So glad Julia and Aaron are thriving!! Julia looks like a different child from when she came home! Love to see the smiles! Peace, Allison

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  14. Wow, thank you for taking the time to update us and share these pics! I cannot get over Julia! She looks so different! Aaron sounds like he is going great--I bet he will love preschool!

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  15. Thank you for taking the time to let us know how the kiddies are doing! Julia looks so healthy, happy and peaceful and Aaron looks over the moon!

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  16. Thank you so much for the update! I've been thinking of your family SO much lately! They look great, and I'm so happy for you all that everything is going so well!

    I've said this before, but they are SOOOO beyond blessed to have you guys! :-D

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  17. Thanks for the wonderful update! The kids look marvelous and I just love Julia's long, soft hair. I hope you continue to have a great summer.
    Cheers from Canada!
    Cathi

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  18. Wow, Julia looks AMAZING! I almost didn't recognize her until I saw that beautiful smile!

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  19. Thanks for the update. Such a great family you have. Thanks for sharing a bit of them with us.

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  20. Your wonderful update was worth the wait!! The kids look so good....cant believe the change in Julia. And just look at her hair growing.Thank you for filling us in. God bless you

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  21. Gorgeous gorgeous gorgeous! Julia looks amazing! Aarons' smile just Getz bigger & bigger.
    Thank you for the update and photos!
    Maria (sydney)

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  22. Oh my! Look at Julia's hair! Growing and so healthy! Aaron looks fantastic!

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  23. It is amazing what love and proper care can do! Julia looks AMAZING!!!! Praise the Lord! What a sweet testimony!

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  24. Your post made my morning! Julia looks like she is thriving in your loving home, as does Aaron. We will continue praying!

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  25. The kids look so good and SO happy! The change in Julia is remarkable with the weight she has put on. I am so thankful that God allowed her to come into a family and to thrive. Thank you for doing what you have done for both these children.
    Kim O.

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  26. Julia looks like a different girl already! You can tell she is a happy little princess! Aaron is looking great too, love his smiles!

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  27. Wow, Julia looks so incredibly different. The difference a couple months makes is really astounding.

    I would be astounded if she *didn't* have Cockayne Syndrome. From my experiences in medical school, during which I encountered three patients with CS, I can tell you that these kids have a very characteristic look, particularly around their eyes. Julia definitely has that characteristic CS appearance. Combine that with all the characteristic CS symptoms that she's exhibiting and I find it very odd that they'd be questioning that diagnosis.

    If anything, I think it's more likely that she has an unrecognized variation of Cockayne Syndrome.

    Whatever the case, hopefully they'll get her sorted very soon so you can begin the appropriate therapies.

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  28. Amazing!!!!!!! Thank you for updating!!! I've been so anxious to see how everyone is doing and just LOOK AT JULIA!!! Those fat cheeks!! Her glow and her hair!! WOW!!

    And so glad to hear how good Aaron is doing! He always looks like the happiest little guy in all your pics of him.

    Thanks for sharing!!! Anxiously awaiting the next updates already! lol.

    Wow.

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  29. So amazing little Julia. Thank you for sharing, they look WONDERFUL and are thriving. God is amazing.

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  30. Yay! I check your blog every day looking for an update, so happy to hear that things are going well! The pictures are wonderful and those kiddos are just precious, I can't get over the difference in Julia!

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  31. Oh this makes me so happy!!!!! I had to come back today to read and look at the pictures......thank you for the updates'!!!!!!!!!

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  32. Praise God what a difference a family makes! They are both wonderful and it is soooo very obvious they are happy. Thank you for hearing the call to rescue these precious little ones.

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  33. Wow - can't believe how well they are doing. Isn't God awesome! What a difference your family have already made!

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  34. Hello- I have been following your blog for a while, and the kids look amazing. How wonderful it is to see God working miracles in their little lives. I was wondering if you could contact me privately, I have a question for you about adoption. jjiecoleman@yahoo.com Thank you! Blessings!

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  35. I think you will be glad about the g-tube, once she has it. She'll still be able to eat, but as you already know, the feeding pressures can be set aside when you know you have a way to get nutrition in easily. And I loved that you can give her all sorts of things by tube. Some people do "juicing," to get raw vegetable benefits, and many people give foods they blended in a diet. There's a great blenderized diet group online that is really friendly, and members share what they learn with each other.

    I love a g-tube. :)

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