Wednesday, May 5, 2010

Trip to Pittsburgh and a Ton of Pictures!

We have been so very busy trying to get everything in place for Zoya's medical care and early intervention needs.  Yesterday we took a trip to Pittsburgh to visit the International Adoption Clinic and the Down Syndrome Clinic.  We are really happy we made the trip and had about 5 hours worth of appointments.  Zoya was a rockstar almost all day and she made some new friends! She was happy and content.  This girl LOVES people!

Our visit to the international adoption clinic started at 11. We got there about 10:15 and filled out some paperwork and were taken right back.  One of the girls that works in the office is from Bulgaria and speaks Russian.  She came in and started speaking Russian to Zoya.  Zoya stared at her with huge eyes and then turned away from her and hugged me so tight I thought my head was going to pop off.  Poor girl, I think she thought the lady was going to take her back or something!! I wonder what memories, if any, hearing Russian triggers...or maybe it just triggers bad feelings and not so much memories.  I wish I could know what goes on in that little head of Zoya's!  We met with a developmental specialist and two residents for about an hour.  She asked tons of questions and we told her some concerns we had.  She gave us some good advice and we learned a few things.  She said Zoya is showing good toddler behavior. One example is that she was sitting on the exam table next to me and she'd scoot up to the specialist and visit for a few seconds and then come right back to me.  This was showing that she knows I am her Moma and her comfort and she feels safe with me!  Usually when we let someone else hold her, after a few minutes she always reaches back for Shawn or I, which is great.  The specialist told us we should not let anyone else hold her and that Zoya has a very friendly personality and kids who just "go to anyone" have a harder time bonding.  Well Zoya doesn't just go to anyone, but most people if they hold their arms out, she will go to them.  We researched a lot about bonding before we adopted Zoya and read that we should be careful with newly adopted children and allowing others to hold them.  Since home, we have mostly been at home when meeting new people.  We are letting other people hold Zoya, as we feel she is already forming a good attachment with us and always puts her hands out to come back.  We decided that we'd look at Zoya--her needs and strengths--and keep the research in mind, but use our instincts to make decisions based about Zoya.  We also know that kids with Down Syndrome in general are very friendly and many times parents have to teach them to give a high five instead of a hug because as they get older it is not appropriate....but for now she's just too darn cute!  We asked "how much is too much?" for the holding.  We are worried that we could spoil her and create a child who can't separate from her parents when that time comes (school) if we are constantly holding her.  The specialist assured us that we cannot hold her too much and reminded us that Zoya was neglected and missed out on being held far longer than any child should ever have to be.  It was pretty strange to sit there knowing the specialist was watching our every move.  It gave me more of an idea of what my parents feel like during an IEP meeting!

Next we met with the doctor.  She knew a lot about adopted children and some issues they face.  She noticed Zoya's soft spot is still open and said that is common in kids adopted from orphanages.  Their development is slowed and so this is not a surprise.  She also said the flat spot on the back of her head is common and indicates that she spent a LOT of time laying in a crib, as we thought.  We had faxed some Russian physican reports from Ukraine to her to have translated.  We were originally told that Zoya had Atrial Septal Defect (which is a hole between the top 2 chambers of the heart).  We were a little confused about this because from what they said, Zoya's heart condition was very serious and she would have died without surgery in Ukraine.  ASD is usually not so serious, but we thought maybe the hole was just larger than a normal ASD.  Yesterday we learned that she actually had surgery for VSD.  This is Ventricular Septal Defect, which is more serious and is a hole between the bottom two chambers of the heart.  According to her records, Zoya was only able to lay in her crib prior to her surgery (in October). She wasn't eating or gaining weight.  The surgery did wonders for her and at 20 months old (3 months ago) she was finally able to hold herself up sitting and has been reaching milestones at record speed ever since.  We are so thankful that Zoya was able to have the life saving surgery in Ukraine! The doctor ordered a whole bunch of blood work to test for common things in adopted children.  This doctor is very good and very thorough!  We mentioned to her that we noticed a little rash on Zoya's belly for a few days and that day we had noticed it on her legs.  The doctor seemed very concerned and asked some questions about it. She said it looked like petechiae (tiny spots of blood due to broken blood vessels).  She seemed very concerned and said that when we got to Children's Hospital for the Down Syndrome appointment, they could add whatever blood tests they wanted, but that she definitely wanted them to do a complete blood count and platelet count the same day, as the petechiae can be an indicator of blood disorders, and leukemia, or things as simple as a virus.  They put a rush on her bloodwork which made me even more concerned.  The doctor didn't want to say much, even though I kept asking questions about what it could mean.  I knew from my DS research that it can indicate leukemia. 

I was very worried and the questioning about the "rash" continued when we got to the Down Syndrome Clinic appointment.  To spare you any worries, they called at 7:30 am this morning and let us know that her CBC and platelet counts were normal.  I cannot tell you how relieved I felt!  I ran to Zoya and gave her a million kisses.  The entire ride home from Pittsburgh, I sat in the back seat watching Zoya sleep just worried sick.  I felt like we've been waiting for the other shoe to drop and was this going to be it? Was our baby going to be really sick? I teared up and had to choke back the tears every time I thought about it.  I kept telling myself not to overreact....but one thing I'm finding is that I still feel, especially after this long grueling process we've been through, that something is going to happen that will take my baby away.  I'm sure I just feel like this because for so long we faced the possibility of this happening.....we had to fight every day of the adoption process for her to be ours.  It is still hard to believe she is ours.  I still worry and feel that I need to hold her so tight and spend every moment giving her my best and soaking up all her goodness.  It makes each day mean so much more, but I hope one day that feeling of her being taken away from us will be gone.  They will see if the other scheduled bloodwork shows anything, but are thinking it is most likely a virus causing the petechiae.  I also read that malnutrition can cause petechiae.  Zoya was obviously fed enough, but was not given the proper vitamins and nutrition a child's body would require while she was in the orphanage.  We have a long ways to go with getting her healthy diet-wise.

Anyway, back to the appointment at the Down Syndrome Clinic at Children's Hospital. This team of people is amazing! They are so knowledgable about Down Syndrome and all of the health risks associated with it.  They loved Zoya and she was putting on quite the show for them! I was impressed as she had missed her nap, but was still a happy camper.  They thought our next goal should be to make an appointment with a pediatric opthamologist.  Zoya's right eye tends to cross inward at times and this is a concern.  At the end of that appointment, Zoya had to have her blood drawn.  The doctors at the DS clinic added (to the list from the International Adoption Clinic) some tests to check for things that are common in kids with DS (celiac's disease, thyroid function tests, chromosome study).  They ordered A LOT of bloodwork.  About 10 vials worth...from our tiny baby!   I knew I wasn't going to be able to handle being in the room when Zoya got her blood drawn so I left and Shawn stayed in the room.  I could hear her screaming so sadly and loudly all the way down the hall.  It seemed to take least 15 minutes...and during this time, over the screams, I heard Shawn trying his best to sing "The Wheels on the Bus." I finally heard them say "all done" and was so relieved.  The guy drawing the blood was very good but felt bad that Zoya had to have so much blood taken.  He was upset and Zoya was pretty traumatized so Shawn asked the guy to stop.  He was probably going to anyway since there was no more blood coming out and he had to keep moving the needle around. Shawn came out and told me they were only able to get 4 vials and that she had a really hard time.  My poor baby.  She was soaked from head to toe with sweat from fighting them so hard.  We will have to get the rest done in Erie on Monday when her arms are healed up a little (not looking forward to that).  Here is what she looked like about 10 minutes after the ordeal:
Believe it or not about 5 minutes after this picture was taken she was smiling, but also exhausted.  Her arms are pretty bad today with broken blood vessels all up and down them and some bruises. 

Here is Zoya and Daddy at our first appointment.

Here she is trying to eat the paper!

Happy girl (way before the bloodwork obviously).

So today I made a whole bunch of phone calls.  First the eye doctor.  They were scheduling in September! Ahh...she put me on a cancellation list and later I got a call with an appointment scheduled for tomorrow! Great! We also made an appointment with the pediatric dentist, and a follow up appointment with her pediatrician.  Next week is her cardiology appointment so we will know more about her heart.  They are doing an echo, but I'm not so sure Zoya will cooperate (she has to lay still for 30 minutes...HAHAHA!). She has her early intervention evaluation coming up as well!  I am also taking her to a doctor who does whole food supplements and nutrition.  She is amazing and really helped me through an illness that nobody else could help with! She has Zoya on a few supplements to help her digestion.  She determined that was her biggest area of concern, along with her immune system. That is to be expected after her IV drip of mashed potatoes in the orphanage (hehe). 

I went to the store the other day and came back to these pictures on the camera! I think Zoya and Daddy had fun while I was gone!
Some Good PT!

Mya and Zoya are really starting to love eachother! Zoya looks at me and pets Mya real nice and waits to hear praise! We have been showing her how to pet Mya nicely.  Most of the time she does, but sometimes when she thinks we're not looking she pulls her ears or fur.  Today she did that and got a big yelp from Mya and Zoya started crying...maybe she realized she hurt her or she was just scared!

Here are some pictures of Zoya and Mya playing nicely with Zoya's musical light-up ball that Mya just happens to love!

Sweet girl petting Mya nicely!

This picture cracks me up! I'm telling Zoya to be nice and Mya looks very cautious...rightfully so! Mya and Zoya are kind of in the same position here!

Today while Shawn was feeding Zoya breakfast, I made chocolate chip cookies.  He was feeding her a banana and I came over with a little cookie.  I gave her part and she wouldn't stop staring at the cookie! We held up the banana (which she normally loves) and the cookie and her eyes and hands went right to the lightening speed!!!  Here is the evidence of her cookie afterwards! Not too messy!

Shawn had to work today so Zoya, Mya, and I played outside for a bit.  She thinks the grass is pretty neat!

Sweet friends!

Laughing girl...

Mya and Zoya watching the neighbor!

Picking the grass....

Tasting the grass....

She looks so teeny tiny here. 

I can't wait to watch her grow year after year on this lawn!


  1. So glad the day went well!



  2. As always GREAT pics!

    Whew! I was holding my breath reading and let out a huge sigh when you wrote that the report was good. Thank goodness!

    Styling in those adorable shoes. Does she love all the shoes that you had gotten for her?

    Glad to hear that all the appointments so far have been going well. WELL except for the blood, don't blame her at all. Poor little thing..... I call them little vampires when they come at you with those trays of vials to fill with blood. yuck!


  3. Again, so many thoughts! Zoya is PRECIOUS!!

    (Your info at the top of the blog about Zoya says June 22, not April 22...check that).

    Blood draws: they stink! Have them try her feet...sounds terrible...but it often works better. You should spend some time figuring out where the veins look best on her. They usually look to mom and dad to help them determine where to stick!

    You are so right to be educated on common issues in kids with Ds or in kids from orphanages...but look to Zoya for cues and trust your own instincts! You and Shawn seem like you have been parents takes many of us lots of kids and many years of experience to get to the understanding you two seem to have already :)!

    Alina is scheduled for the IA clinic here on Friday and will be evaluated for preschool next month. We will have all the medical appointments coming up that you guys are scheduling right now. FUN FUN FUN :)...

    We have been through most of this already with Bridget. Please let me know if there are questions I can answer for you!!

  4. I am officially a stalker! :) I was "here" earlier but didn't get to see the pictures and read the rest of the story! :) I'm learning so much from your blog and will be making a list of all of the things that we need to do and people that we need to see when we get back.

    Your house is beautiful and Miss Zoya is so very sweet!


  5. Yep! You guys are exactly on top of things! Zoya is going to continue to thrive and amaze everyone with her abilities! She's SUCH a doll baby! LOVE her and love all the photos! They used a vein in Sofia's head the other day for bloodwork was awful to see but I do know that head veins bleed really well...yikes!
    I need to see if we have an internation adoption clinic in California?

  6. Tears of happiness are in my eyes after reading your post. Her wonderful life with you and Shawn has begun, her medical and emotional and spiritual care is beyond measure! God was right on selecting you to be her parents!(not that's any surprise!) I know you are so busy, but I hope and pray you continue to write of your life with Zoya! In Christ's love, Mona

  7. Well, that has been quite a day for all of you with all these apointments!!!
    What a relief, when they called you about the blood-tests. THANK YOU GOD!!!
    Blood draws: Here they use "magic"bandaids: at least half an hour before they stick, they put them on the arm/feet, so the stick does not hurt that bad...ask for those. Oh, poor Zoya! Poor Moma!! Congrats to Daddy to be brave to stay with Zoya and to say Stop!
    The pictures are beautiful. The green grass with "summerish" sweet! I get a bit "jaelous" about your sunny and warm weather. Here it is still cold and rainy and even snowy :( and it is May!

  8. Welcome to parenthood! You will NEVER stop worrying about one thing or another, so you might as well start with the gray hair now! :-)
    I remember taking Kevin for bloodwork the first time; he fretted forever, and ended up laughing because it didn't hurt like he thought it would.

    Take care and good luck with the rest of the tests.

    Sue M.

  9. Oh, Sarah! so relieved to hear about the blood results! I haven't seen you outside for a couple of days and was a little worried reading the first part there. What a wonderful Mother's Day for you this year! She is so precious and you are all so lucky to have each other. Love, Liz

  10. glad that you have a great team to look up for Zoya

    the pictures are great! she is a doll

  11. GOLLY she is cute! I LOVE the one where she and the dog both look the other way. so precious!

  12. How very scary about the Leukemia daughter had a scare at 14 months old. She became very ill and blood tests were alarming. She had to be tested every 3 months for a long time, but at one point developed petechiae up and down her legs. I was TERRRIFIED. After some trial and error, we realized that she was having a very odd reaction to some new pull-ups I had just started using. Once I stopped using that brand, she never had it again (And didnt have Leukemia, thank God!)
    Have you recently started using a new brand of diaper on her? Just a thought.

  13. Does Miss Zoya get more beautiful each day? I think so! I love the pic of her and the dog with their backs to the camera. I think you should take a pic of her in the summer every year on the lawn like that. He legs looks so small. She is just so perfect. How do you ever put her down? I am so happy for you and her!
    Be blessed!

  14. Sarah,

    By the way, HAPPY FIRST MOTHERS DAY!!!!!!!

    I remember my first like it was yesterday. Enjoy the day and take it all in........


  15. Hi Sarah & Zoya...Boy you've been a VERY busy woman. Love all the pictures. I will leave you be this weekend, being your first mother's day and all, he!he!
    Enjoy it ALL!!!!!! She is a very precious and LUCKY little girl. I just can't wait to have those feelings you and Shawn are feeling with "bryce". Hugs, Kim & Tom B.

  16. Jessie occasionally has petechiae, usually on her chin or face when she has coughed or sneezed violently. I know several other kids with DS who occasionally or sometimes have it whose bloodwork is normal. Sometimes with things like Jessie and sometimes when they are sick. Also, though, Jessie's very best lifetime friend did have it consistently, more constantly during the time b4 they found that he had leukemia. At that time though he was continually sick. He is considered cured of leukemia now (past 5 years). Jessie has that bloodwork done once a year, I find that the Drs. here have to be reminded of what is in the DS health guidelines as they don't always remember.

    It is wonderful that you have continued to blog, sharing Zoya's sweet story. I love seeing how she has blossomed and bonded. She is so beautiful. I love reading the firsts that might have never been and celebrating that with you.