Monday, July 30, 2012

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 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!

Thursday, July 26, 2012

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!

Wednesday, July 25, 2012

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!)

Sunday, July 8, 2012

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. 

Saturday, July 7, 2012

A Long Catch Up Post!

We are having a great summer...we've been VERY busy!

Zoya is taking a break from school for the summer :) We started her for a couple weeks in the summer program (just 2 mornings a week) but then decided she needs a break! So I've been trying to find lots of ways to keep her busy, engaged, having fun, AND learning. She enjoys sensory activities such as bean and ice play, water table fun, swimming in her small pool, and carrying her little radio EVERYWHERE with her. She is a big fan of Doc McStuffins on Disney lately. She is still loving horse back riding and this week we have her third session! We've started travelling for her PROMPT speech therapy sessions again every other week.  We hadn't seen the therapist since August (we took a break with all of Mila's needs and needed time to integrate as a new family). The therapist could not believe the progress!! This made me extremely happy! Sometimes you don't realize how much progress your child is making because you see them every single day! 

She just had her 4 year check up! She is weighing in at 32.5 pounds and 38.5 inches tall! That puts her in the 90th percentile for height and the 60th percentile for weight (on the Down Syndrome Charts) she is my string bean! I discovered that they did not order the correct views for her neck xray so back we go! I always request a copy of any reports from any tests for this reason! They said her neck xray was negative, and it WAS, but they didn't order the right views to actually check for AAI!  We also learned her right tube is already! It was only 3.5 months ago that she had them placed! Her last set lasted over a year. So we have some medical appointments in Zoya's future. 

She also had another horrid reaction to her vaccine. She has never responded well so I told them I'd only allow one at a time. Sure enough just before midnight she woke up with a high fever (at least no vomiting this time because I knew to pump her full of meds before bed). It was then followed by 3-4 awful days of a miserable Zoya who turns into a child I don't even recognize! I called the doctor to tell them to put it in her chart and talk to them about discontinuing vaccinations. They told me this was a normal reaction and I assured them it is not. Mila has had vaccines and we've gotten the typical slight fever and fussiness, but THIS is completely NOT normal! I can't even describe the monster Zoya becomes after a vaccine. If my children didn't have heart conditions and weren't at a higher risk for getting sick, I'd surely not vaccinate but that's a debate for a whole other place that'd I'd rather not open up here! 

Who knew all it took to get over her love/hate relationship with the carousel was riding a REAL horse!

Pure joy!

So proud of herself! High five!

A big train fan these days. She could watch this zoo train for hours! 

Learning to take care of Maple

Minnie gets a turn! 

Learning to lead Maple

"Taking him for a walk" as Zoya calls it!

"Look Dad, can I have one? Promise I'll take good care of it!"

Trying to get on the horse!

Putting the ring on his ear!

Nothing better than this!

Sisters playing in the bean box! 

Love how Mila is looking at Zoya here! 

Mila has been growing by leaps and bounds. In fact, I just pulled out Zoya's old 18 month clothes and they just about fit Mila! WOAH! Zoya was wearing 18 month clothing at over 2 years old!!! It is crazy to think just how much Mila has grown since coming home! She was never meant to be little...there's no "little" in her blood LOL. Mila has been working a lot on standing, sitting on a stool and getting on all fours to work on core strength, feeding goals (looks like she's not doing too bad in that department, right?). She has a consult for sure steps (SMO's/ankle stability braces) and they said while she could benefit from them now they want to wait a few months when her growth spurt is over (will it ever end???) so that she doesn't outgrow them in a few months. Insurance typically only covers one pair a year, so that's the plan! Just as her sister is outgrowing the need for them, she will be fitted for a pair! Good thing I saved all of Zoya's old shoes!

Mila just had her 15 month check up and weighed in at just over 22 pounds! She is 29.5 inches if I remember correctly. Her doctor thinks it's a good idea to have the sedated ABR hearing test and as long as we're doing that we are going to try to get an MRI done as well just to make sure her nystagmus is related to DS and not neurological in nature. Mila just went for her swallow study and airway follow up appointment. Unfortunately the swallow study showed that she aspirated on thin liquids one time, so we were not released. BUT she is showing lots of progress. The only time she aspirated on thins was when they pulled the straw cup away mid-suck and messed up her pattern that she has down so well! So the doctor was not very concerned and we will see him again in 6 months! 

Mila's little personality is really starting to show! She s a FUNNY FUNNY girl! She tries to make us laugh by making funny faces. She is also trying to get the hang of this whole "communication thing." She tries all her sounds and her few signs all at the same time when she wants to communicate something, it's pretty funny! She figures if she just throws it all out there maybe something will work to get her what she wants! She is still waking up between 5 and 5:45 most mornings despite our best efforts. She is very happy and very LOUD when she wakes up, just talking away in her crib! 

Mila sleeps in the strangest positions!

OUCH!! No worries, she doesn't stay in one position for longer than 30 seconds usually!
Tip for Baby Bean Play-give the baby a binky so they don't eat the beans ;)

This it the life!

I think she is thinking "wow when did I get such fat piggies?"

And from the POPSICLE FILES.....

My favorite!!!

Future Statue of Liberty?

It's gotta be good when you get the popsicle drool all the way to the neck creases!!!