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 forever....at 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 cookie...in 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!