Tuesday, April 27, 2010

Zoya's Big Day Out!

This morning Zoya had her Doctor appointment.  With the help of the Down Syndrome Clinic in Pittsburgh, we finally found a doctor who was willing to take her. We put Zoya down for an early nap so she wouldn't be cranky at her 11:00 appointment. She was so happy when we got there and being quite a goofball.  After over a half hour waiting in the exam room with nothing but her diaper on, she got a little annoyed and by the time the doctor came in she was not having it! She was friendly and waving to the doctor in the beginning, but once the doctor laid her down she was screaming! I found it funny that while we were waiting Zoya, for once, did NOT want to be held! Go figure...little stinker! She wanted to crawl all over the table and rip up the crinkly paper that lays across the exam table.  Here is the outcome:

1. Her Heart: We are being referred to a pediatric cardiologist to check out Zoya's heart and make sure it is in fact fixed after the surgery she had in Ukraine.  We are working on getting the Russian heart records translated to English so we know exactly what the surgery did and to make sure she was in fact treated for an Atrial Septal Defect like we were told.  We asked about how her chest forms a bony "v" shape pointing out right on her surgery incision and the doctor said that it doesn't appear to be a problem and it was probably just how they closed her up. She said that is not how we would do it here, and maybe it just didn't close up or heal up correctly.  She thinks it is only cosmetic, which was good to hear.  So we will wait for the call from the pediatric cardiologist.

2. Her cough/runny nose: The doctor, to my surprise, prescribed an antibiotic to clear up her symptoms.  Welcome to America, here is your antibiotic! LOL.  I thought she was getting much better and barely has a cough, and has never had a fever, so I think we'll wait a few days and see if she is better before we give it to her.  I hate using antibiotics unless absolutely necessary. 

3. Her teeth: Her teeth look good from what the doctor can see although she said her gums were a little inflamed.  This could be a result of not having her teeth/gums brushed during her time in the orphanage.  We will follow up in a few months with a pediatric dentist, but good to know it doesn't look like she has any rotten teeth. 

4. Weight/Height: Zoya weighed in at 24 pounds, measured 32 inches and turns out to be in the 80th percentile on the down syndrome charts! My Big Momma!  She barely makes the "regular kid" charts, but good to know she is bigger than most other kids with DS.  This could be due to the fact that they fed her a ton of CRAP, mostly carbs, no protein, etc. So if we don't see any weight gain right away that is just fine.  Her body will have to adjust to her new diet, which includes much more protein, vitamins, and less carbs!

5. Parasites: We get the fun job of collecting stool samples to make sure she has no parasites! Oh the joy :)

6. Down Syndrome: Since we met Zoya, I had suspected the possibility of Mosaic Down Syndrome, which only occurs in 2-4% of the down syndrome population.  Basically Mosaic Down Syndrome means not all of the cells have an extra chromosome...some have the extra chromosome, and some do not....where as in typical trisomy 21 down syndrome, every single cell in the body has the extra chromosome.  I wondered if Zoya may have mosaic down syndrome because of a few things.  First, her facial features are more mild than other children with DS.  Second, I noticed that she doesn't have the typical single crease across her palms like most people with DS.  Her palms look like ours.  Third, another characteristic of DS is a big space between the big toe and the other toes, and Zoya doesn't seem to have this either.  She also seems to have an aptitude for music and I've heard people with mosaic DS are musically talented.  Obviously no two cases of down syndrom are the same.  Some people with DS have some characteristics and not others, some have all, some have fewer, etc. I didn't metnion anything to the doctor because this is not a primary concern at this point.  The doctor actually mentioned to me that she would like to do some chromosomal testing to test for mosaic DS since Zoya's features are milder than what would be expected of most children with DS.  We don't care which type of Down Syndrome Zoya has, but will probably have the testing done just to know.  People with mosaic DS have slightly higher IQs than people with typical DS.  Does this matter to us? No, but it might be a good bargaining tool when Zoya is school age to push for more integration. 

7. Tear ducts: We have to keep an eye on Zoya's tears as she has seemed to have an overproduction of tears since we've known her.  The doctor says that it is common for people with DS to have blocked tear ducts and that she might have to have a small procedure to unblock the tear ducts.

Here is Zoya on the way to her doctor appointment:

Happy girl thinking this is so much fun!!

Okay guys, this isn't so fun now that we've been waiting 30 minutes!

After the doctor appointment it was lunchtime and Zoya was getting hungry.  The doctor's office is right next to Panera and so we scooted over there to test the waters with Zoya in a restaurant! She did fabulous and ate some turkey along with some chicken noodle soup. She was very well behaved (always is when she is eating!) and was waving to everyone!

Here is Zoya at Panera:

After Panera we ran to the grocery store quick so I could get some ground turkey and chicken to make and freeze some food for Zoya for the next few weeks.  She is starting to get picky about eating veggies so I'm hiding them in her turkey and chicken burgers at the great suggestion of my brother :) We shall see...but I think she'll have no idea her veggies are hiding in there!

And to leave you with a cute picture from the other day.....

8 comments:

  1. Wow, what good news! She looks so happy and beautiful!

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  2. Sounds like a great appointment and a super day overall (how could it be otherwise when it involves Panera?)!

    What a beautiful hat Miss Zoya has! :)

    Enjoy the rest of your day!

    JTHTL

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  3. The story/pics are so cute, typical toddler at the Dr. office. Glad to hear allt he good news. So exciting she likes to go out ot lunch...a typical little princess she is! Have a great time with all her new "firsts" She really is adorable.

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  4. All good news! I love the picture of her smiling in just her diaper...so beautiful...I am glad that the appointment went well...and eating out!

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  5. Glad to hear her doctor's appt went well. Do they plan on checking blood work, including thyroid? (I'm a peds nurse) so just curious of what things they typically test for on an adopted child from out of country. Have fun with those stool samples LOL.
    I love the sewn knit hat...so girly and I definitely think Ms.Zoya is going to be girly. What is a good time to give you a call? Possibly Saturday when she's down for a nap. Take care Sarah....Kim Baumann, adopting Vanya #11

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  6. We had the same thoughts about our little Joaquin and Mosaic Down syndrome. He wasn't even diagnosed with DS until he was 3 months old and then we thought for sure it would be MDS. His facial features are mild too and didn't have a lot of the tell tale characteristics...turns out he has classic Trisomy 21 after all. You're right it doesn't change anything but it's a curious thing to find out. I had one genetic specialist say that mostly likely ALL children with DS have a form of Mosaic but there is just no way to test every cell or tissue in the body but that is why you see such variances in level of functioning and overall health issues (like heart, thyroid, etc) I find it all very fascinating!! So glad to hear she's doing so well. Can't wait to hear how much Sofia weighs...I think she is following in Zoya's footsteps...except she isn't burning any calories because she's not mobile yet. My little butterball! :)

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  7. A day in the life of a mom, I love it! I am glad you got out with her and she did really well. I am sure it wont always be like that(mom of 4 here) but I bet 95% of the time it will be. I take my kids everywhere with me and they are really good.

    I love Zoya's hat!!Where did you find that?! I am so happy to see pictures of her at home where she belongs.

    Be Blessed

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  8. Zoya is beautiful! Our daughter Dasha (Ukraine 10/08) had plugged tear ducts too and she had surgery about a year ago on them because she too looked like she was crying at times. The surgery definitely helped, but she may need another one due to how old she was when she had her first (6 yrs old). We also thought she may have mosaic Ds because her features are more mild and how high functioning she was. She didn't have the crease on her hands either etc. She ended up having trisomy 21 just like our other daughter. :)

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