Family Pic Nov 2015

Family Pic Nov 2015

Wednesday, October 19, 2011

Long overdue update

Hello blogging friends!  Sorry it has been so long since an update : (  Obviously, the reason is simple:  busy, busy, busy!!!

When we brought these two sweet children home, we were wrapping up the school year.   Between being gone for 6 weeks last spring and adjusting to two more kids with many doctor's appts.,  I really slacked off on the homeschooling.  So, I am trying to be more consistent and "catch up."  So please continue to be patient with the blog updates.

Aaron is going to 4 year old preschool and LOVING it!  Every night before he goes to bed, he asks if he is going the next day.   His teacher, Mrs. B has CP also, and she just adores him.  I think sometimes she worries too much about how he is going to be able to do things.....a lit bit protective!  He and Regan, our four year old daughter, are best buddies.  They really enjoy going to preschool together.

Aaron has had surgery on his eyes, but we think it will have to be done again.  About 5 days after the surgery, we could see them coming straight to the front and then they actually came in and were crossed.  The dr. said this is normal and that they would correct themselves over some time.  He also said the longer they stayed "crossed" the more likely they will stay straight permanently once they straighten.  But now, they have drifted back out.  He has a follow up with the dr. next Wednesday.  I'm sure he will recommend he do the surgery again, where he will inject more botox into the outer part of the eye to "immobilize" the outer eye muscles and cause the inner muscles to tighten and pull the eyes straight.  This requires visual feedback from the brain.  This is why it is not an exact science.  But once they get the right amount of the injections into his eyes, it should be a permanent fix.

We have also been taking Aaron up to Shriner's Children's Hospital in Philadelphia.  So far we have made the four hour trip twice.  The first was to have an initial evaluation.  The second was for a motion lab study.  This was a two hour appt. where they do a series of tests and evaluations to guide the surgeon's plan for operating on his legs.  We will have to go up for a pre-op visit sometime soon, as this 4 hour surgery is coming up on Nov. 18.

Julia is doing very well also.  She had surgery to put in a permanent GI tube.  This is so much easier for her and us than the NG tube.  She is still gaining weight, though I am not sure of her exact weight.  It's somewhere over 26 pounds.  She has had some problems with reflux, constipation, and wretching.  But we have gotten all of these under control with the surgery, antacid meds, and Miralax.  During the surgery, the dr. discovered a large hiatal hernia which he was able to repair.  So things are going much more smoothly with her and she is not suffering from so many unpleasant physical problems. 

I guess the most important information to pass along to you all is that the genetics department finally got back to us about Julia's "diagnosis."  At the moment, they are still working on writing up a report with all the information in it.  I did talk with one of the genetic counselors on the phone a couple of weeks ago and they told us they have found several unbalanced translocations in studying her chromosomes.  But none of them are on the section of the 5th chromosome that would indicate  she has Cockayne Syndrome.   There is some defect on the 5th chromosome, but lower or higher (I can't remember) than where the CS defect would be.  What it does point to is another disease that isn't  named after a doctor.  They said it is called 5Q14.  However, this is not a complete diagnosis as there are several other unbalanced translocations between chromosomes 9-16.  So at this point, it sounds like we don't really know exactly what she has, but we know that it doesn't look as though it is Cockayne Syndrome.  This could mean that her life expectancy is not as definitive or shortened as we thought.  We knew from the beginning that we would love her and give her the best quality of life we could give her, for however long the Lord keeps her with us.  This has not changed.  Medically, it really doesn't matter.  With or without a definitive diagnosis, we will treat her symptomatically.  And most importantly, she has a family who loves her and will care for her needs, even without having a definite diagnosis. 


Wheeling him to eye surgery

Best buddies!

First day of preschool for Aaron and Regan


Button table....one of Aaron's favorite activities at preschool



Movie time!







She always wants her hands in her mouth



She is ticklish under her arms!

Look how strong I am now : )

Daddy's turn to tickle



Why do you keep flashing that in my face?

20 comments:

  1. These pictures are nothing short of AMAZING!!!! Wow, Wow, Wow!!!!!! Thank you so much for sharing!!! Just as GOD wanted - PERFECT!!!!!

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  2. Wow the kids look amazing!! I have been following your Blog since Adeye did Julia's fundraiser. If you need anything while you are here in Philly for Aaron's surgery please let me know. I just spent some time at Shriners keeping my (blog)friend Tammy company while her little one (also adopted through Reeces Rainbow) had leg surgery. So if you need someone to keep you company or an extra set of hands or even something to eat that is not hospital food I would be happy to help out!
    Becky
    Becky@sammyskatewear.com

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  3. They look so happy! Thank you for posting your beautiful pictures. It sounds like your Philly days must be very long, but we would love to see you if you could (Andy says hi!!). And if you ever need a place for a night, or to wait during the day, you're more than welcome...

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  4. The change in Julia is amazing! And Aaron's smile, it gets me every single time. I'll be praying for the upcoming surgeries. Many blessings.

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  5. The change in your newest children can only be defined as a God thing. Thank you both for following his call to bring these two home to the family He had planned for them from the beginning. Oh what a difference a loving family makes!

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  6. Thank you for the news - it's good to hear about how you are doing! Parents are doing a great job! :) My heart rejoice to see children progressing SO MUCH! What a gift!

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  7. They both look GREAT! Praise God! fresh grace to ya both as you love them with the Father's love :)

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  8. Wow--new creations! It's so amazing what a loving family environment can do for a child! Love your hearts!

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  9. The children both look so good now. I cannot get over the change in Julia and the smile on Aaron's face is priceless.

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  10. Wow! What a joy to see Aaron's light-up-the-whole-room smile and Julia looking so chunky and active - amazing! I've been reading since Adeye first announced you were Julia's family, though I'm not sure I've ever commented before. I'm wondering if you know any more about Julia's diagnosis? She looks like she is ready to take on the world now that she has had a chance to blossom in your sweet family! God bless :)

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  11. I am in awe of those kids! Does Aaron ever stop smiling? He makes me smile with every picture... And Julia. The transformation is incredible. She is looking great. I am so glad she has a home and family, instead of lingering in that crib. God bless your family.

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  12. I have been following along and I am sooo amazed at Julia. She is just a little cutie and growing so much and Aaron, he is such a handsome boy. AMazing transformations!!!!!!!

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  13. What a wonderful update, Carey! You guys are doing a splendid job! Aaron's perma-grin is beyond priceless. How can anyone get tired of that kind of joy expressed all throughout the day!? And, Julia!? My goodness, she's a different child. So glad to hear y'all are doing so well. Now that we've entered into the homeschooling world ourselves, I understand about feeling short on time. I thought I might have more time because we're home more. Ha! :) It's a joy seeing your family. Thanks for sharing yourselves.

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  14. This is sooo AMAZING to witness--even from afar!! The Lord and a loving family are working miracles with Julia and Aaron! That little guy never stops smiling--he seems to find pleasure and contentment in everything--even as he's being wheeled to surgery. What a sweet child! And Julia--WOW!! You can just SEE it in her facial expressions and her eyes--she KNOWS she is loved. A HUGE difference from the photo of her in the orphanage looking so serious and wearing that sleeper. She's quite the little fashion plate now lol! And of course, Regan and the others are wonderful and beautiful too!! TY for sharing!

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  15. I just found your blog and it truly inspires me! I relate to the fact that homeschooling has it's ebbs and flows and that you have to take advantage of the time once things settle down. I can tell that you all are working hard and that it is not easy but you are doing the work of God and it is truly a wonderful thing! I can only hope that we will succeed as well with our twins when we finally bring them home...
    Cynthia
    http://www.adreamadoption.blogspot.com

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  16. I couldn't find a way to email you, so I am leaving a comment! Sorry that it is impersonal!
    I was doing some research on line, and found a team that travels to Ukraine to provide therapy, and I think I may have found your son, aaron! You may be well aware of this already, but I couldnt live with myself if I had found video and pictures of him, and had not told you! Maybe it's not aaron, but it sure looks like him!!! Anyhow, one of the comments on this website said "I think he was on reeces rainbow" and that is when I was even more sure, so I searched high and low for your blog on RR, because I knew I had seen his cute face on their before! I would love to know if this is him, and if you had seen it before! I'd love to hear from you! TaraN4ms@comcast.net

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  17. Oh, I forgot to add the link! Haha!
    http://www.teamworksukraine.com/2010/05/miracles-and-moments-6/

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  18. saw this flyer today: http://www.teamworksukraine.com/wp-content/uploads/2011/09/TEAMworks_flyer1.jpg

    and said "look at aaron!!"

    that kid is such a happy boy! I'm so happy he's home now!!

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