Sunday, December 12, 2010

Sleigh Ride to Santa's Cabin

Saturday (after making over 28 different kinds of Christmas cookies with friends all morning) we went on quite the adventure!  We had planned with some friends to go on a horse drawn sleigh ride through the woods to Santa's cabin for hot cocoa! After quite the drive there and a wrong turn or two, we finally found the place we were looking for....waaaay out in the country!

We had a blast! It was the absolute perfect day just under 40 degrees, beautiful snow and lots of sunshine! I don't think I could ever live somewhere without snow!! I'll be tired of it by February but for now I'm loving it!

Zoya was really interested in the horses and got to use her "horse" sign with real life horses! Here she is getting a chance to drive the sleigh! She loved pulling on the reins!






Zoya's first taste of snow....(mean daddy!)

Zoya says what the heck was THAT I just ate?


Lovin' some Daddy:)




On the way back we got to watch the sun set through the trees and saw a couple white-tail deer skipping through the snow.  So many firsts our little girl gets to experience this year!  This will definitely become an annual tradition!!!

Saturday, December 11, 2010

Gluten Free Follow Up Post

I have gotten a few questions on the last post that I want to answer.


Have you had her tested for giardia and h-pylori?

She was tested for giardia and all other parasites when we first arrived home...all negative. We have not had her tested for h-pylori, although I've been reading a lot about it lately. Since diarrhea is her only "symptom" and we are seeing improvement for the first time since she's been home, we're thinking its probably not that but will have her tested if the diet changes and supplements don't fix the issue.

What I want to know, is how did you get Zoya to eat solids like goldfish AND feed herself??? (Asked by an adoptive mama who says her 2 year old daughter with DS is having trouble eating solid foods and will spit out many foods that have texture to them).  Also, she still drinks from a bottle/sippy cup and will not hold it. I try putting her hands on there to help me hold it, but she usually pulls away. She won't feed herself, though she's picked up a couple of fruit puffs herself (yay!) and put them in her mouth. Any advice, or previous blog posts I can read? Thanks!


Zoya was on soft foods only for about the first month to two of being home. She also had an aversion to textured foods and would spit things out. When she first came home she would only eat baby food, soup with mushed up bread in it, or anything that was blended into a smoothie-like texture.  The key is finding a therapist who specializes in feeding and sensory issues! In our state the Occupational Therapists are the ones who work on feeding goals as well as sensory goals. I know in some states Speech Therapists are the ones who are responsible for working toward feeding goals. Either way, try to find a great therapist who knows a lot about feeding issues AND sensory issues as they are almost always interrelated in our kiddos with DS. Some things that worked for Zoya (suggested by our OT) were to use a Nuk Brush and a Chew Tube to "wake up" her mouth before all feedings. We would rub the nuk brush all around her mouth and tongue and then we'd put the chew tube to the back of her teeth and eventually she got the drift to bite down on it repeatedly.  We also bought a vibrating tooth brush before going to Ukraine and that is also a nice oral-motor stimulation tool. I also just learned that you can buy a vibrating Nuk Brush!  Our kids are not used to chewing because (at least in Zoya's case) they fed her at break-neck speed and the food barely touched her tongue before it was down her throat. She was never given the opportunity to learn to chew or even suck. She barely had any input oral-motor wise so she had no idea what to do with the food and her brain had no idea how to process the textures and feelings of having food in her mouth. So oral motor input basically wakes up the mouth before eating and also helps to train the brain to accept different textures and foods. Some of these issues occur in children with DS who did not have the orphanage background as well, simply due to sensory processing issues.

In addition to this, the single best piece of advice I got from out OT was to LET ZOYA PLAY WITH ANY NEW FOOD before expecting her to eat it! This really worked with Zoya. I would give her new food and let her just play with it with her hands a couple times before I expected her to eat it. Imagine being blindfolded and expected to eat whatever was put in your mouth...yuck! When we see our food we at least know what the texture will likely be like....Zoya had no idea...so she was dealing with a new texture and a new taste, which would cause her to spit it out.  Here I was just putting it on a fork and trying to put it right in her mouth.  As soon as I let her play with it with her hands she usually eventually put the food into her own mouth. By letting her play with her food and get the tactile input, it seemed to prepare her brain in a weird way. All I can say is that IT WORKED. So let her play with her food....if she won't touch it, try to put it in her hands, or just leave it in front of her for a little while with no pressure. Some other suggestions would be to put little crumbs of cookies or graham crackers in some pudding, start with real small pieces and work your way up so she can start tolerating bigger pieces. Start with it small enough so she won't be able to push the pieces of food out...it would just be like a grainy texture first and then you can slightly and slowly increase the size of the cookie pieces you're putting in there. You can do the same with rice in baby food or other soft foods. If she likes the little Gerber puffs, see if she will eat them with a little yogurt mixed in. This is how we started with Zoya and worked out way up.

As far as not wanting to hold the cup/bottle....we (with the help of our wonderful OT again) got Zoya off the bottle after only a month home. We skipped sippy cups all together because Zoya had a hard time getting the idea of tipping her head back to actually get the liquid from her bottle or sippy cup. She could only feed herself if we laid her on her back. So we went right to straws (which are supposed to be better for oral-motor development and speech anyways) so that she didn't have to tip the bottle. She really doesn't have to hold the cup either, she can just stick her neck out and sip:) Although Zoya does fine holding her straw cup. If you need ideas for teaching drinking from a straw, buy A Rubbermaid Juice Box that you can squeeze the juice from the container into her mouth a tiny bit to teach her how to suck from a straw.

Feeding issues are often caused by sensory processing issues so my other overall suggestion would be to find a good therapist who knows a lot about sensory processing disorder/issues and work with your child so she is better able to process any and all sensory input. Doing sensory therapy and sensory play helped Zoya in many many ways, including feeding issues!!

What is Nutritional Response Testing?
In a nut shell it is a way to figure out what exact nutrients each individual body is lacking. The overall idea is that our bodies only know how to heal themselves, but we have to give them the right nutrients in order to do so. So many health conditions are caused by our awful diets...and all of the chemicals and additives and unnatural ingredients in all of our foods today.   If you want to read more you can check it out HERE.

Friday, December 10, 2010

Teething and Gluten Free Life

Poor Zoya has not had a great time with teething lately. Every time she has cut a tooth she has had tons of drooling, stuffiness and/or a cold, a low grade fever, cheeks that look like they've been slapped from time to time, and the least fun part of all...diarrhea! She is currently cutting her top two canine teeth and her first two year molar....all at once.....OUCH! She looks like someone beat her up with the puffy purple watery eyes and pink cheeks, not to mention the constant stream of drool hanging out of her mouth! Our OT gave us a purple P-chew which is her new best friend. She has been gnawing on that thing non-stop! I've been using a tiny bit of orajel which I know is helping because when she sees the tube she takes out her binky and opens her mouth (even though she makes the squishy "this tastes really weird" face). I've also done Tylenol a couple of times....but even though I think she looks miserable...she is still happy as can be...thank goodness because when she cut her first two teeth (since being home) she was sooo crabby and whiny! She doesn't love to bite into anything cold so the frozen washcloth, frozen banana or other type of frozen food so that won't work with her. I have decided to throw a HELLO TEETH party when they're all in :) I can't wait!!

And onto the diet area....Zoya eats pretty darn healthy if I do say so myself! She has been seeing a doctor who specializes in nutritional response testing (the same one I've seen myself for a few years). She has been taking various whole food supplements and vitamins since being home and they've helped GREATLY! She currently takes DHA/EPA, Vitamin D, a probiotic, calcium, nutrivene nightime formula, and longvida curcumin (all reccommended by the Trisomy 21 research foundation) along with a couple whole food supplements that change as needed.  But even more help than the supplements is the "diet plan" (which is more a "way of life" plan) that she has been on. Since Zoya was first home, we've done very little carbs/sugar and tried to do lots of protein and veggies. She eats better than me and better than most 2 year olds I know! She likes meat and eggs and vegetables, which is great! She doesn't like them as much as say, cookies, but if that's what I feed her she will eat it happily (mostly...with the exception of a few days ago since she is now feeding herself almost 100% independently, she got a spoonful of ground turkey and veggies and then flicked the veggies off her spoon until there was only meat left...stinker). All of her meals have always been protein and vegetables. In between meals she would eat goldfish or pretzels or crackers. She snacks 2-3 times a day at least.

About a month ago the doctor she sees for nutrition suggested cutting out ALL GLUTEN since Zoya was still having issues with diarrhea. I knew it was coming and I was dreading it.  I have to say, gluten-free snacks are pretty easy to find. I didn't have to worry too much about her meals since they were already gluten-free (with the exception of the breadcrumbs I used for her burgers...which I have since changed out for gluten-free). We found pretzels, crackers, animal cookies, and cookie and pancake mixes that are all gluten free. Other things we use for snacks are Cinnamon Chex Mix, or corn tortilla chips, or some types of potato chips, which are all "naturally" gluten-free. I didn't know how much this would help since the only gluten she ate was during snack times or during special occasions like a birthday party or something. I also didn't know how much difference it'd make since her blood work for celiac's disease came back negative. 

I have to admit it has made a HUGE difference!! It has taken about a month but her diapers are finally starting to get much better...even with the teething! Solid poop is soooo much easier!! In addition to the diarrhea issue, I've noticed other big surprise changes with the GF diet and the nutrition doctor agreed when she saw Zoya for the first time since starting the diet! Zoya is able to focus for longer periods of time and has even added a few new movies to her previous SAME OLD MOVIE which was the only one she wanted to watch. I sat down to work on some flash cards with her that I hadn't done in about a month. She sat so long and correctly picked the right card out of a choice of 3 almost 100% of the time! She seems less hyper and more focused overall. She isn't on the go as much as she used to be.  It's almost like her brain has been able to slow down and calm her down as well.  She seems to be out of the fog that I never knew she was in if that makes sense!  I mean she's still the same old goofy silly Zoya, but just down a notch or two.  Maybe she's matured in the month, but I really think a lot of that is attributed to cutting out gluten.

Eating gluten free makes things a little tricky at times (going out to eat, parties, telling her she can't have a piece of cake that everyone else is eating, etc.) but overall its fairly easy and has made a big difference. For now Zoya will stay gluten free, maybe some day in the future I'll try to reintroduce it and see if her body can tolerate it any better, but that likely won't be the case.  Many kids with DS have celiac's disease or are gluten-sensitive, even when modern day tests can't detect it. 

Anyone else have kids eating GF or thinking of going gluten free?

Saturday, December 4, 2010

Holiday Cheer

This weekend was off to an amazing start when I got home from work Friday and saw a package from our wonderful friend Christina in Switzerland!! Christina and I "met" through my blog and have been email buddies since before we met Zoya! She prayed us through our adoption and even had a place in Germany set up for us to stay if we would have gotten stranded there due to the volcano. I still really don't like that word much. Anyways....her packages are the BEST! She makes these beautiful bibs that you see in a lot of Zoya's pictures...they are the best because they cover her entire front AND they are oh so beautiful and thoughtfully made. She also sends delicious chocolate that does not last long around here. Shawn wasn't even home five minutes before he broke into the chocolates!!

How could this package not make you just smile?

Zoya's favorite part of the gift was the Santa bib which she clearly thought was a hat. She would not give this bib back to me once she saw it (which is why it is not in the picture above!)

She even decided to watch Elmo with her "hat" on. She wore it for 10 minutes...no joke!

She even made this adorable sailing bib customized with Zoya's name!

Today the holiday cheer continued when we had breakfast with Santa.

This is my new favorite "Zoya face!"

Pretty Princess in her Party Dress!



Excuse me Mom, I'm EEEEEAAAATING!

Dancing with Aunt Jen

Meeting THE REAL! Santa

Shawn warned Santa that Zoya likes beards and he took her hand and said PULL! She gave it a little tug and then kind of petted it!

Smiling at Santa

She was mesmerized by his beard!

She wasn't too sure what to think! The left hand never moved from this position!
We told her to hug Santa and she did, but she was not moving that left arm! She just laid her cheek on his.

Santa really loved her and when he handed her back he looked at us and said, "You guys are blessed." Well I guess Santa knew what I wanted for Christmas.....for others to see what a blessing Zoya is!

Zoya with her handsome Daddy



Breakfast was at a beatufiul bed and breakfast!

It's beginning to look a lot like Christmas....(but thank goodness we dodged the Buffalo storm of 18 inches in a few hours this week!)

Taking a snuggle break with Daddy

Zoya and friends...


break for hugs!

What a great start to our Christmas fun!

Wednesday, December 1, 2010

Scary Hair-y

Zoya is trying out the Rod Stewart look....what do you think?



I think there is definitely a resemblence there and if Rod Stewart was Ukranian I might wonder....... ;) KIDDING!

Anyways....a little haircut here and we're all smoothed out :)
My big girl finally sat in the chair all by herself for her hair cut!

Tuesday, November 30, 2010

The Popsicle Dance

I have a million things to blog about....things that are annoying me about how most of the rest of the world sees Down Syndrome...but I just don't feel like being a downer tonight....so I present you with a video of "The Popsicle Dance." Zoya came up with this one all on her own! And you get to hear her "no no no" which she is starting to say to me when I tell her to do something she doesn't want to do!!! This chic cracks me up!





And looking at these pics the thing that comes to mind is that one of the 3 words we were given to describe Zoya before we met her was "active." Yep, I agree :)

And a bonus video...warning, if you get motion sick take some Dramamine! We decided to try the "blanket swing" last night for some sensory play. The only other time we tried to do this it was with Zoya's OT and she HATED it. She has come a long way in her sensory development and I will just say Shawn and I couldn't keep up with her demand for "more swinging" last night! Our arms were burning. She would lay down on the blanket and say "more" and we would swing her again...she thought it was hilarious and even more funny when Mya would run into the blanket and bump her from underneath! I love this laugh of hers and I think she still sounds like a baby when she laughs...I LOVE it!

Thursday, November 25, 2010

Happy Thanksgiving!

Reflecting back on last Thanksgiving...this is what I wrote last year....

As we sat down to eat all I could think about was Zoya and how this will be her LAST Thanksgiving alone in an orphanage and how next year will be her FIRST Thanksgiving with her family who loves her so much. We even talked about how next Thanksgiving Zoya will be sitting at the table with us. Next Thanksgiving we will sit down to eat and remember our days without Zoya and her days without us. We will be so thankful that we have each other because she needs us and we need her. This year as we were eating I imagined Zoya sitting to my right smiling and throwing mashed potatoes. I wanted her there so bad that it hurt my heart in a way I've never felt before. I wanted her there so bad that when I closed my eyes for a moment, I could see and feel her there with us. I imagined looking at Shawn and smiling at each other as we realized this amazing dream has come true. I imagine reminiscing about how we were so scared to step out on faith and take this journey, but also knowing it was the most amazing leap of faith we've ever taken. Imagining what life will be like from one year from each day, when we are together with our Zoya, makes the pain of not having her here sting a tiny bit less.

And this year...Zoya sat to my right, and though she didn't throw mashed potatoes she dug into her mashed potatoes with both hands! Shawn and I smiled at each other with unspoken words that said how blessed we are.  We had such a great day together. We are so thankful to have Zoya home with us for her first Thanksgiving!

Our weekend started off with Uncle Bub coming to town last night.  We ate lots of yummy appetizers for dinner and just hung out.  Today we decorated the Christmas tree, which Zoya loved!! She really likes the lights and hasn't bothered the tree much at all! But just in case we put any breakable ornaments toward the top of the tree!

We have an artificial tree....Zoya felt it and made this face:

Then she signed "hurt"....I guess she thought it was prickly!

Here she is in awe just staring at the lights! (Notice Elmo? He looks pretty surprised, maybe this is the first time he has seen a Christmas tree??)

Zoya signing "tree"

Loving the lights.....(so is Elmo....and Mya)

Sweet girl...

This is what Zoya does now when I get the camera out and say "smile"...she makes such a cheezer face you can't even see her eyes!

She thinks she is soooo funny....and, she is!

Love this picture....Our cute little table plus Zoya's cute little dishes :)

Eat! Eat! Eat! GIVE ME FOOD!

I'm sooo hungry....but they're still not feeding me!

I'm just going to pretend I'm eating even though there is nothing on my plate!

OK PEOPLE, where is the turkey???!!!

Zoya's first bite of turkey...she enjoyed it :) (She is laughing here)

Digging into the mashed potatoes...

Very focused...

No clue what this face is all about haha...but check out the fist full of mashed potatoes!

Turkey Coma....

If anyone thought this girl was sweet and innocent...here's proof she's got a little naughty side...(pulling the dog's tail while she eats her turkey dinner!)

Playing dress up with Uncle Bub's shirt...

Happy Thanksgiving! I am so thankful for my sweet Zoya. I am thankful that I have a husband who loves me and takes care of me and is the best daddy ever! I am thankful for my friends and family and for my snugly dog Mya. I am thankful for my house and my job. I am thankful for my washing machine and my dryer (after hand washing all our clothes in Ukraine I realized how lucky we are). I am thankful that God chose us to travel half way around the world to find our sweet girl. I am thankful God gave me His eyes for the orphans in distress (because it changed me) even though some days it would be easier not to have seen those things. I am thankful I am an American. I am thankful for so many blessings on this Thanksgiving Day and every other day!