Mila On the Move!

Mila has been working hard in Physical Therapy to strengthen her muscles. Her goal right now is crawling. We know crawling is so important to develop not only core, shoulder, arm and hip muscles, but it is also important for brain development. I asked Mila's physical therapist if it's common for kids with Down Syndrome to walk before they crawl because Mila seems closer to walking than crawling. She said it is very common for kids with low muscle tone and that we'll just keep trying to get her to work on both crawling and walking. Zoya crawled first but very soon after she learned to crawl she was walking so she didn't crawl for that long.

Mila is starting to scoot around and try to figure out how to get her body to move when she is on her belly. She seems to have a technique unlike any other I've seen!

Here is the "lunge"

This is my favorite....she digs her right toe in and flings her left leg to lurch herself forward!

Trying to get her knees under her and pull with her arms...

A face also works as a third arm at times

Love that smile!

Working hard!

The "bear" pose that she hasn't quite figured out how to move forward in yet (only backward)

Extra points for creativity but not so much for form!

"How many push ups did you say I have to do?"

So close! 

Her funny face! 

And Mila has been standing and finally holding on with only her arms and not using her body to support herself! She even took the teeniest tiniest baby step using her toy walker during PT!!! She loves being upright. After about 3-5 minutes of standing her body starts shaking because she is working so hard so I help her to sit down and she gets mad and tries to pull right back up to standing! My frail little baby is getting so strong!

This picture reminds me of a little old lady with her dress, sneakers, and walker :)

Go, Mila, Go! We are so proud of your determined attitude! You have been a fighter from the beginning and we're seeing that more and more every single day!

Sensory Learning

Sensory play is so important for all kids, but especially important for kids who lacked those experiences early on in life (orphans) and for children with Down Syndrome (as many children with DS have some sensory needs). Zoya and Mila are polar opposites in so many ways. One of those ways is how different they are with their sensory profiles. When Zoya came home she was very sensory defensive in most areas. She freaked out with loud and sudden noises. She got easily overwhelmed in large crowds. We had to leave worship at church because the music was too loud. She couldn't stand to be spun around or even tipped back ever so slightly. She hated swinging in the baby swing. She was scared of a lot. A lot of things helped her become less sensory defensive, including Therapeutic Listening, and a healthy sensory "diet" of sorts. Mila on the other hand is such a huge sensory seeker and dare devil when it comes to sound and movement! She however, has a harder time using her hands to explore her environment so these activities will be great for Mila when she is a little older too!

 One common sensory activity is shaving cream play. We took it up a notch and had an hour of "sensory learning" experience. 

First we practiced some letters in the shaving cream. We focused a lot on "Z" and "o" getting her ready to write her name. 

Zoya wrote these letters by herself and told me what they were. Now, if I said "write a letter 'p' she probably couldn't do it, but she likes to doodle and then tell me what letters or numbers her doodles look like. It's a good start!

She is starting her big "Z"

First line across...

Slant to the left...

Pull back across!

"I did it!"

Just playing :)

I'm getting better at tolerating messes...clearly I have my own sensory issues!

Another activity we did was drawing horizontal lines to practice our pre-writing skills. She had to connect the correct colored bears. 

We sorted our bears by color

To "up" the sensory experience we added rice...here was Zoya's initial thought. She got over it easily and thought it was cool!

I told her "hands up and don't move" while I pushed her over to the sink to clean up!

We finished our sensory play by playing in soapy water for another 20 minutes!

"Yes, mom?"

Here is an example of how we carried over the sensory learning to "paper/pencil" skills. I'll post more on this another time! This is her letter Z done all by herself on a small sentence strip. We used the stickers as guides for her to know where to draw her lines to make the Z! 

Mended Little Heart

Mila had her 6 month cardiology follow up appointment today. I was nervous, as always, right before cardiology appointments. She weighed in at almost 23 pounds and sprouted to just over 30 inches!

Here she is getting her EKG....
a mouth full of snacks typically keeps her pretty happy....imagine that ;)
I know you'd never guess based on her size!

The cardiologist came into the room and looked over her records and asked how she was doing. I blurted out "fabulous, really really good." Then I thought to myself, "Ugh now since I said that out loud something will be wrong...stupid stupid stupid." I talked myself into calming down and realized I was being ridiculous thinking that! He was just as excited as I was that I didn't have to check any of the "other health conditions" on the checklist they give us at each appointment. Last time quite a few of those boxes were checked with symptoms and other health conditions and this time I read through them all twice because I couldn't believe I didn't have to check ANYTHING. I was so thrilled in fact, that I wrote in big letters right across it "NONE" with one of my best 2nd-grade-teacher smiley faces! Maybe that's why he was just as excited as I was...it was that smiley face ;)

Anyways, we chatted a bit about orphans as we always do, and then he checked her over.  Last time he decided to keep her on the Lasix because her liver was still low and palpable and there was just the smallest indication of extra fluid. This time her liver was exactly where it was supposed to be and no indication of issues with extra fluid. So we get to stop the Lasix, which means Mila is completely MED-FREE!! I think she gets a diploma for that or something! He listened to her heart and looked rather confused. Immediately my heart jumped to my throat and I asked what was wrong. He said something to the effect of "I could have sworn she had leak from her VSD patch last time she was here. And I told him he was right, that she did. He said "I don't hear anything at all. Usually leaks don't go away" He even double checked her records. I loved seeing that confused look on his face and thought "That's MY God!" When he finally got to the echo he saw just the teeniest tiniest (definitely smaller than before) lead from her patch. We were told this happens after patching ASDs and VSDs sometimes if it's a big hole and she would just probably have it for life as it was in a place where there really isn't much ability to grow new muscle/tissue to close on it's own and it shouldn't cause her any problems. It doesn't much indicate anything medically that it's smaller, except that God is healing her heart in ways that can't be explained by medicine :) And I think that's pretty cool! He took new measurements for pulmonary hypertension and her numbers showed no pulmonary hypertension any more!!! We were hopeful that the surgery would solve the problem of the pulmonary hypertension but it was a "wait and see" kind of deal. Once he finished the echo, he smiled and said "see you in two years!" I was definitely not expecting TWO years! But I'll take it! Praising God tonight for healing our jelly bean and shining through her!

The "look"

Getting so big!

Love that smile!

Father's Day (A Little Late)

So I'm only about 2 months late with this post...but better late than never.

If you remember, for Shawn's first father's day, we got him a "Zoya tree." You can read about it HERE. Oh Zoya was so tiny and so was that tree!

Last year I didn't take a picture of Zoya and Shawn with the tree because it appeared to be dying :( It made me so sad I couldn't even stand to take a picture. At the end of last summer, we pruned the tree, cutting out the dead pieces and the tree has made a beautiful comeback! In many ways this is symbolic of Zoya's journey with us. We had to peel back the layers of hurt and neglect and orphanage life and slowly we are revealing a child who is bigger and better and more beautiful with each passing year! It is a flowering tree, but we have only seen tiny buds for the first time this past spring. Just like Zoya, the tree needs tender loving care and attention but with those things the buds will multiply and bloom one day soon! They may not have bloomed when all the other Eastern Redbud's were blooming, but just like Zoya, in their own time, they're blossoming! It brings tears to my eyes to look at this picture from two years ago and see the changes that have happened since then, both in the tree and in our beautiful Zoya girl!

So this year for father's day we just had to gift Shawn with a "Mila tree." (Now if we have any more children we will need a bigger yard). The tree we chose for Mila is a Japanese Weeping Cherry Tree. Just like Mila, when the tree blooms, others can't help but stand in awe and take notice of it's beautiful blossoms. The growth rate of its many weeping stems is quite fast. This reminds me a lot of Mila because Mila grew physically SO fast since coming home. The cherry tree, for many in Japan, symbolizes “the transience of life” because they bloom so quickly and it's only a matter of days before the flowers fall to the ground.  This tree reminds me of Mila because of this. It is a reminder that although all life is short and passes so quickly (just like the blossoms on the tree), one's life can inspire others with it's beauty while impacting those who are simply passing by. Our Mila girl has made such an impact on so many people. Just as the beautiful blossoms on the Japanese weeping cherry tree, Mila's spirit draws others in and those who meet her can't help but see the beauty and magnificence of her life! I will have to remember to take a picture with Mila and Daddy when the tree blooms!

If you notice, Mila is wearing the same dress Zoya wore in her first father's day tree picture :)

Mila Hooooooooope! (8 Months Home)

Mila no longer responds to just Mila, well she does, but she prefers the princess name Mila Hope. She thinks it's hillarious when she is in trouble, as you can see in the video below. How can I ever get mad at that smile?? She is goooooood. Only 16 months and she already knows how to make me forget why she was in trouble ;)

So since I missed posting about her 8 months home, I'll give a quick little update here! 

Mila is starting to babble a lot more and makes a "dada" sound, although she doesn't connect it to daddy yet.  She can sign "more," "drink," and "all done" (even though "all done" is a very rough approximation...she is consistent with it....well after she smacks the drink out of my hand and then I remind her to please sign "all done" that is! haha). She knows how to get our attention by whining or yelling and then flashing a killer Mila smile! She would prefer to be held all day long and never put down! She is standing holding on and can stand without holding on very briefly before losing her balance.

She still isn't crawling yet but she is starting to scoot with a little help to plant her feet into the floor. She is the best eater ever. Some of he recent favorites are sausage, pepperoni, coconut yogurt, grilled cheese, and my special veggie burgers! She has 3 full molars and is working on a fourth, but still no other teeth! She is down to just one bottle a day (goat milk and bone broth) and she has about 2-3 cups of coconut water or almond milk from her straw cup. We have been able to get her off of the Prevacid which makes me happy because now she can fully absorb her nutrients! The only medication she is still on is lasix which will hopefully be discontinued in a couple weeks when we have her cardiology checkup! She takes many whole food supplements tailored to her body's needs and she is becoming very healthy! Her hair is growing beautifully and her skin is snuggably soft! She has lots of nice baby chub on her cheeks and belly and thighs!

She has recently started sleeping in until about 6:15/6:30 which is BEAUTIFUL! Today she slept in until 7am!!! We are doing Therapeutic Listening with her and I really believe this has helped her sleep better! The one day we didn't do it she was up at her usual 5:30...coincidence? I don't know but I don't care to find out either! I'm not surprised it is helping her sleep because it helped Zoya sleep less restlessly when we did it with her. I just hope it continues....it makes life so much happier!

She is a mama's girl if you ask me ;) I just love her to pieces and can't stop kissing her chubby cheeks! There is just something about this girl...her spirit...that is so awesome! 8 months seems like a long time, but when I think of how far she has come in 8 months, it seems like such a short time to flourish so much! God is totally showing off with her!

I love all her silly faces and expressions. If I make a face at her she loves making the same face back. It makes me laugh to see what I must look like to her! She is a class clown of sorts and loves making her family laugh!

Mila Hope, we love you more than all the peanuts in the circus!

What Did She Say?!?!

As you can see in the post below, Zoya is doing good with her reading, but as you can see in this video, we've still got some work to do in the speech area ;) LOL!!! You should have seen Shawn and I almost pass out the first time she blurted this out! (She is trying to say "frog" if you're wondering)!!!

Zoya Learning to Read!

If you've been following this blog for some time, you'll know that I love all things from the Preschool Prep Company!  You'd think they're paying me to endorse them, but really, I just love their products and curriculum for Zoya! If you click on the "preschool prep" label or put it into the search feature on this blog, you'll see I used the Preschool Prep programs as a basis to teach Zoya her letters, numbers, colors, and shapes.

Just like the other concepts, the sight word program has DVDs and flashcards, and little readers that you can purchase. There are 3 DVDs each with 16 sight words presented on each DVD. The sight words are chosen from Fry and Dolch sight word lists (research-based most frequently read sight words). We started by watching the first 4 sight words on the DVD and using the flashcards to practice during the DVD and after and in between watching the DVD. When she mastered those 4 words, we moved on to the next 4 and so on. As you can see the flashcards have a black-print word on one side and then a "character" word on the other side. Zoya starts by becoming familiar with the "character" whose name is "play" for example, and then transfers it to the black-print word. I love that way of teaching it to her! Once we got through the first DVD, I used only the words presented on the DVD to start pairing 2 and 3 words into phrases. For example, I'd put 2 word cards side by side to make it say "I play." Very simple. Then I'd add another word to make it say "I play that." The little readers that came with the program have all the sight words from the first DVD as well as other words. I made flashcards for the words that were not on the DVD or in the flashcard pack to teach those as well.

Slowly I started adding more and more words to make the sentences more complex. I pair word cards and picture cards to vary the difficulty of the sentence. As Zoya masters the words, she no longer needs the picture side of the cards. In some of the videos you can see she still flips the word over to remind herself of the picture on the other side. This is a great strategy because it teaches her to use picture cues to decode and recall words, which is a great reading strategy for young readers. I took sentences right out of the little reader books and formed them using word cards. After Zoya got better at this, I transferred her to the actual book, reading the same sentences. She is so proud of herself and I'm so proud of her! My sweet girl is newly 4 and already beginning to read!

In my experience teaching children with special needs, I find children with Down Syndrome do very well with sight-word based programs to use as a foundation, and then, if they're able, to progress to a phonics-based approach.

I love letting Zoya use different "pointers" to read her sentences, such as the princess star wand you'll see in one of the videos.

Here are some videos of my big girl READING!!

(My favorite one)

I can't wait to hear Zoya read to me more! I just love her sweet voice!

I'm ALIVE!!! and I'm 30!!!!!!

So after several emails (some worried and some joking with me about where I've been) I decided a blog update is LONNNNNNG overdue!!! I need to get back into the swing of things! These days much of my time is taken up by our two beautiful girls and helping newly inquiring Reece's Rainbow families! In the meantime, I missed posting about Mother's Day and Father's Day and Mila's 8th month home, our trip to the National Down Syndrome Convention/Reece's Rainbow Reuinion, and many other happenings. So hopefully one day I'll get caught up!

Today I am 30 years old! Wow, how did this happen? When I was younger, 30 seemed so old!! I prefer to say today is my first anniversary of my 29th birthday, though! When I was 18 and just starting out in life, I would have never been able to guess that this would be my life. Married to the man of my dreams (I had always hoped that would be the case), and mama to two beautiful daughters....those things are not so far off from what I'd hoped ;). But what surprises me about my life is that at 30 years old my identity is a WIFE and a MOTHER first and foremost. Recently I resigned from my teaching job after being denied a 2nd year of leave.  My priorities have completely changed over the past several years. My family is more important to me than any amazing teaching job (and it was a great job!) A few years ago I never would have been able to imagine myself walking away from a career that I loved with every ounce of my being. A few years ago, material things mattered a lot more to me. At 30 years old, I know that my treasures are not my house and my belongings. My treasures are my family.  I went from "I could never in a million years be a stay at home mom" to "I wouldn't trade my ability to stay home with my girls for the world!" We are blessed that I have the opportunity to stay home with our girls and feel it is what is best for them right now.

As we sat on the front porch this morning having breakfast, I looked to my left and saw my amazing husband and thanked God for him. I looked to my right and saw my two beautiful daughters playing. I praised God for sparing their lives and allowing me to be their mama.  I wondered how in the world I deserve such a beautiful life. Don't get me wrong, there are days where the house is a mess and the girls are having bad days, and Shawn is working 12 hours in a row, and I just want to pull my hair out....but in the still moments I know how blessed I am....I can feel it with every ounce of my being. Believe me, there are days I think to myself "what were you thinking taking this road?" There are days I wonder if all those people who thought we were crazy for choosing to adopt kids with special needs were right. But more days than not at the end of the day when the house is quiet, I feel in my heart that this is exactly where I am meant to be.  I never would have guessed this would be my life at 30 years old....because I never could have imagined it to be this beautiful!

30 is a milestone of sorts....a BIG number in the age game. Several years ago, I would have thought at 30, I'd be content and settled. I can say that I am happy, but I don't ever want to just feel content, or settled and I certainly don't want to become comfortable in my ways. Because when I feel settled and comfortable, that means I'm not doing enough in this one and only short life. I know many people that live for the American Dream. While at one point that sounded appealing, it no longer does. I hope 30 means stretching myself in ways I never thought possible, continuing to aim only to please my audience of ONE, trying harder to do more for others who need my love, and stepping out in faith MORE than ever before.

And with that...some pictures of my lovies just because you waited so long for a blog post!

Be back SOONER than later this time!!! (I hope!)

In the Arms of Jesus

Photo Credit: Erin Murphy

"At approximately 12:10 while I held Ryan in my arms and daddy held him as well - surrounded by so many who loved him Ryan drew his last breath. He is without oxygen, medicine, tubes, wires, and HURT - he is at peace." (Ryan's Mama)

Hug your babies tight tonight, and always. Tomorrow is not promised for any of us.