Family Pic Nov 2015

Family Pic Nov 2015

Wednesday, May 11, 2011

Soooo busy.....

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......

14 comments:

  1. Papa said this
    So good to hear from your post. Your story is special because you are special. I am praying for your whole family. Amy and John are having a paperwork delay, I pray that works out.
    God Bless you all.

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  2. Carey thanks for updating! I know you aren't overloaded on spare time. I wish you knew someone who spoke aaron's language. Even if they could just help out via phone!
    The other news sounds good! Hope you get good news from all the docs!

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  3. It is great to hear how things are going. You are more than welcome to join us over at http://groups.yahoo.com/group/Fortheloveofmykids/ We are a bunch of homeschoolers of adopted kids. It is a great group with a wealth of information!

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  4. Hi, I hope you consider videotaping Aaron's "discussions" in Russian with you. It could be wonderful to have these video diaries later in his life. Who knows what little gems he is sharing with you about his transition to American life! Maybe if he retains knowledge of Russian, he can someday tell you, or you could eventually have them translated. I hope his conversations at such a crucial time aren't lost forever!

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  5. Don't worry about us, focus on your family and the needs of you and your children. Its WONDERFUL to hear updates and news however please don't ever feel pressure. There is a massive group of support and tons of prayers being sent to you. Take one day at a time. Celebrate the milestones (big or small) and please know I am praying for energy, strength, and renewal to be sent your way. Your story is amazing and I am so thankful you are welcoming us to join in. Many many blessings!!!

    hillarymacdonald.blogspot.com

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  6. Wonderful update! So glad things seem to be going in a positive direction with both of your new kiddos. Thanks so much for taking the time to write it up - I can't imagine how busy you must be. Look forward to seeing the pictures (when you have time again)...

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  7. So glad to have an update. Continuing to pray for you as you get back into your routine and find ways to communicate. :)

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  8. blessings.

    you are doing good work.

    thanks for the little window into your lives.

    ~zena

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  9. Oh my goodness, I have been itching to pick up the phone and call you :) Dying to hear how things are going. THANKS for the update. Wow....I know how crazy busy it has been for you guys. I cannot wait to hear more about what the geneticist finds out.

    Give your darlings a squeeze from us.

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  10. I LOVE the idea of videotaping Aaron's one sided conversations in Russian. A thought about the walker and playing outside... My fourth child has CP but wanted to be able to play with his big brothers. We got a walker called a Rifton Pacer Gait Trainer, with a sling seat, and it had great off-road capabilities. You can often find them used on eBay, and your local Easter Seals or United Cerebral Palsy center may have one to lend you. I'm sorry we don't still have ours to give you!

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  11. Enjoyed reading how things are going. Glad to hear life is going well. Hope you feel more organized and caught up soon! LOL

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  12. Thank you sooo much for the update, I have been praying for you and love to hear how you are doing.
    Cara
    Mom to 2 from ukraine (7 &13) and 2 from China (19 months).

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  13. Thank you for the update!!! Too funny about Aaron and the dessert...

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