Saturday, October 29, 2011

Discharged

We have just seen the doctor and she was pleased that Alayna went all night without oxygen and didn't need suctioning except for me and my friendly bulb syringe so we are Out.Of.Here! Yahoo thank you for the prayers.
Jason, Dariya &Aidan are enjoying the Step Up so hopefully by the time we do paperwork and get home they will meet us there.

Friday, October 28, 2011

Another day...

Alayna had a good night last night but, her oxygen levels started dropping again just before 7am. The nurse suctioned her out but she still sounds junky in her chest. The doctor has just been in and we are unfortunately staying another Night. Please keep praying for her that we can go home tomorrow. Thanks.

Thursday, October 27, 2011

Alayna and the hospital

Last weekend Alayna had a wet cough that kept she and I up for several nights. She missed preschool on Monday because she was so tired but was fine once she slept in. Tuesday night she slept much better and hardly coughed so we thought we were on the upswing.
But, after preschool on Wednesday she didn't want to eat lunch and went to bed pretty quickly.

When she woke up from her nap she was running a fever, lethargic, wheezing and gasping for breath. Off to urgent care we went. After an hour and a half there the doctor felt like we needed to come to the local children's hospital. After 5 more hours, two deep suctioning treatments, chest xrays and four breathing treatments Alayna still could not keep her oxygen sats up so she was admitted.

It was first thought she had pneumonia but, instead it's a virus. Bad news because antibiotics don't help a virus so we have to ride it out. They won't release her until she can keep her oxygen levels up consistently on her own. So looks like we are here at least until Friday.

Her fever is gone and she is resting comfortably now so we are prayerful that when she gets up she will be much better.

Please keep her in your prayers so we may go home quickly. As we were both already way behind on sleep we are worn out.

We are sad that she will miss the Step Up for Down Syndrome and celebrating with all our friends but, we will keep our germs to ourselves.

Thanks for the prayers and support.

Wednesday, October 26, 2011

Dariya

In celebration of down syndrome awareness month here are 21 facts about Dariya.


1.  She is happy every time she wakes up and is ready to jump out of bed as soon as you go into her room.
2.  She scrunches her face up when she smiles really big which is super cute. (One of Aidan's favorite things she does).
3.  She loves food, any kind, you name it she eats it! (Hence her 32#)
4.  She is addicted to bananas.  She never had them until we brought them to the orphanage daily so not sure if it is just comfort food or she really enjoys them that much.
5.  She is doing well with potty training and usually stays dry during the day.
6.  When we were in Ukraine with her she didn't know how to open a book,  now she requests them all the time.
7.  She doesn't mind wearing her glasses during the morning hours but doesn't want to wear them much after nap
8.  LOVES taking baths, she will flip, flop, splash, swim for hours if you let her.
9.  When she doesn't get her own way she can flop down on her bum and sob a good one (drama, drama).
10.  She loves to be tickled and has a contagious laugh.
11.  She is a mama's girl.
12.  She is independent but, loves being taken care of too.
13.  She purposely seeks me out especially when Alayna is sitting on my lap.  Jealousy anyone?
14.  She has arms like Stretch Armstrong, if she wants something she WILL reach it.
15.  She still tidys up around the house like Cinderella.
16.  She crosses her pointer and middle fingers on both hands when she is really stretching for something.
17.  She loves any kind of motion.  Swinging is her favorite. She giggles at bumps in the road. She will be our roller coaster thrill ride seeker!
18.  She is a sponge and has learned more than 75+ signs and 20+ spoken words.
19.  She loves riding the bus and going to preschool.
20.  She is an affection monster, we are covered in kisses and hugs all day long.
21.  She is fabulously wonderful, we couldn't be more blessed and are thankful God chose us to be her family!

Monday, October 24, 2011

Alayna...

In celebration of down syndrome awareness month here are 21 facts about Alayna.

1.  She LOVES books.  I can't tell you the number of times I hear "Mommy, read book please" in one day.   Although sometimes she has a paper addiction and likes to eat them.
2.  At home she has dropped sign language for speaking and speaks in 2-5 word sentences.  However, we haven't seen that at school or even at church she is pretty quiet in other settings.
3.  She is a social butterfly.  She loves knowing people's names and thrives on being able to call people by their name.
4.  She knows her colors,  ABC's and the phonetic sound with them, can rote count to 10 and loves counting one to one correspondence.
5.  Even though she weighs 28# she must have bird bones, because she feels light as a feather.
6.  She is daytime potty trained.
7.  She loves playing hide and seek. (must run in the genes, Aidan used to ask us to play for hours)
8.  She enjoys music and will sing, play, dance her heart away.
9.  She loves eating fruits but is more finicky when it comes to veggies (she will avoid the green ones at all costs, don't tell her I hide them in her food)
10.  She is definitely a daddy's girl, unless she is sick then she seeks mommy out.
11.  She loves her siblings.  She is one happy girl on weekends or days when school is out.  Aidan hung the moon in her eyes.
12.  She enjoys preschool and talks about her teachers and friends all the time.  Too bad she doesn't talk to them while she is there....
13. She will try to get out of fine motor tasks, usually opting to smile at you or try to talk you into something else.
14.  She loves bouncing on our trampoline, even though she can't jump yet.
15.  She is pretty easy going and rarely gets upset.
16.  She enjoys having her picture taken.
17.  She is shy.
18.  She is a princess, she likes to dress up and be told how pretty she is.
19.  She loves to watch signing time and requests it every time we get in the van.
20.  Goldfish is her favorite snack.  Ice cream is her favorite dessert!
21.  She is delightfully sweet and we are blessed to have her!

Next up facts about Dariya....

Friday, October 21, 2011

No more doctors...

I inadvertently scheduled 3 days worth of doctor's appointments this week for the kids without realizing it.   While it is true that some people with down syndrome have more health issues we have been blessed that our two little cherubs are both healthy.

Tuesday was Dariya's follow up opthamalogy appointment to check her eyes with her glasses.  All looks great.  She is seeing across the room very well, which she couldn't do at all before glasses.  Her one eye that was wandering a bit before glasses has lined up nicely.  No patching needed.  She will go back in the spring for a follow up and to check her prescription then just yearly visits will be necessary. 
Wednesday Alayna had her 3 year check up and her flu mist.   Dariya received the flu shot (we were told she has an egg allergy so we avoided the "live" version).  She wasn't thrilled with the shot but only cried for about 3 seconds and when the nurse said, "all done" Dariya popped up and signed all done and said done and was happily heading for the door.  

In the past year Alayna has gained 6 pounds (28# total) and 3½ inches (34 inches)!  Yahoo for Alayna~  Please don't burst her big girl bubble by telling her that her sister has gained 2 pounds since being home (32# total).

This one is for you Stephanie & Emmie!
 I ate my first WHOLE apple this week...
Thursday was Aidan's final fitting for his palate expander.  On November 7th he will have his palate expander and top braces placed for the next year.  After all the sizing they did in his mouth at the appointment he isn't too thrilled to go back.

On a more fun note, the girls are loving playing make believe together.  My mom caught them under the kitchen table playing school.  They were taking turns being the teacher and singing all their songs from school.  When school first started Dariya did not like a backpack at all.  Now she LOVES to wear her backpack around and help Alayna put hers on then they pretend they are heading off to school.  Always a good time when these two are around.

Tuesday, October 18, 2011

Driving Miss Daisy (Dariya) take 2!

About a month ago, Jason spotted a Barbie jeep at a garage sale down the street.  He couldn't resist the urge to buy the jeep for the girls, full well knowing that their short little legs could barely reach the pedals. 

Thankfully the really sweet neighbors nearly gave us the car, so how could he resist? 

The girls have been having a blast playing in it and have finally figured out or have grown enough that they can successfully push the pedal and make it go by themselves.

Funniest part is Alayna is always the driver and Dariya is always the chauffeured, waving princess.  These two crack me up!  
I had a great song picked out but You tube was taking forever to upload it so I gave up to get my post finished!  So feel free to turn up your own music and drown out the audio.


Dariya had her follow up opthamologist appointment today and her doctor was thrilled with how well her eyes are already adjusting to the glasses.  She was really pleased and will see us again in the spring to make sure her prescription doesn't need to be adjusted.  If all is well we will then only have to go in yearly. 

That was good news to this mama who is about DONE with doctors appointments.  Next up, pediatrician tomorrow for Alayna's 3 year check up and Dariya's follow up shots.  Then Thursday Aidan gets his brackets placed for his palate expander and braces.    Nothing like 3 days of doctors appointments in one week.  Ugh!

Thursday, October 13, 2011

Celebrating 3 months home

Three months ago we landed home from Ukraine with Dariya.  Our adoption was an amazing journey and I am so thankful that Jason stepped up after hearing God's call and we brought Dariya home.  Our family is perfect whole with this little cherub in it. 

When we first arrived home Alayna wasn't too sure what to think of this new person being here all the time, but within a day or so that quickly faded into absolute joy that she had someone her age to play with all the time.   We laughed at the girls constantly hugging and kissing each other.  Dariya was not that way with any of the kids in the orphanage.  In fact, we never saw her touch another child besides to shake hands when they passed us and said good afternoon.

Dariya has transitioned very well.  She is like a little sponge and just soaks up new things every minute it seems.  She is signing and saying lots of words and just today said a two word sentence.  She is very loving and enjoys family life.  She could live in the bath tub, swimming away if we would let her.  She enjoys going to school and riding the bus.  She loves books (Hallelujah) she requests them all the time (Very Hungry Caterpillar is her FAVORITE), she loves playing outside and is especially enjoying crunching leaves (her orphanage didn't let the kids play outside much or at all after Sept 1st),  she is doing very well with potty training and has begun sleeping at night in her big girl bed, and she is by far my least picky eater!  She still rocks herself to sleep sometimes but, it has diminished tons since leaving Ukraine.
What are these things???
A few weeks ago, I began to notice that the glamour had started to dull a little bit around the sisterly love.  Not in a terrible way but, I definitely think we are over the sisterly honeymoon period.  They love each other and enjoy each other's company but, they get tired of one another, jealous of whoever is closest to mommy or Aidan, sometimes want undivided attention and get mad when they don't get it, share well sometimes and not so well other times and are misbehaving on purpose to see if they will get the same punishment as the other one. 

Sounds like any other family with 3 year olds to me, well, of course unless your family is a lot more put together than us and if it is please email us because we can use all the tips we can get.

We know that God knit our family together long before any of us were born and I am so glad that He did.  I am humbled that he chose us to be parents of these three. 

Some days I don't feel overly confident that I made a positive impact on my kids life or that I didn't scar them beyond what counseling will require later but, I know when God calls you to do something he always equips you.  So I continue to pray for wisdom and discernment to be the best parent to these three and to fully enjoy the journey we are on together.  We love you Dariya and are so glad you are home.
Only the best for my girls....BOX SEATS to the best show in town!  They do both SO love their big brother!

Tuesday, October 11, 2011

When you come to a Y in the road...you have to say goodbye

As Alayna turned 3 over the weekend we have come to a Y in the road.  As parents we always want what is best for our children.  Sometimes making those decisions is so hard to know if you are doing the right thing.
Alayna and her PT, Erin
We are finished with early intervention and leaving the Lee Ann Britain Infant development center, where Alayna has had classes and therapies since she was 3 months old.   The girls could stay at IDC up until kindergarten but, since we have such a fantastic school district and equally fabulous preschool included that is minutes from our house we made the decision to move the girls just to the school district.
Dariya with her OT, Angie
As we come upon this "Y" in our journey I would be lying if I told you that is was an easy decision to leave this great program that we have taken part in for the past 3 years.  Just looking at Alayna with her PT Erin for their last session brought tears to my eyes remembering how just a few years ago my little girl couldn't even hold her head up on her own.

The staff at IDC has walked with us on our journey of understanding how we can help Alayna (& now Dariya) reach their fullest potential.  They have provided us with friendship, love, support, education, advocacy, and given our girls a great start.  Many of the staff were there to greet us when we arrived home from Ukraine with Dariya which again was another huge blessing.
Alayna with her ST, Amy
We know many places around the country and especially around the world don't have a fantastic facility like this close to them so we count ourselves blessed to have been able to take part in this program.

We celebrated our last day with our IDC friends in style, at the pumpkin patch.   We had a blast! We bounced, rode the train, rode the horse swings, played in the corn crib, tried the slides, rode in the wagon, picked our pumpkins and had a final snack with our friends and hugged them goodbye.

Seriously the BEST out of all the shots.  UGH!

Weeeeeeeee, I love that her eyes are closed!

Dariya is asking, "Are you sure you want to go get a pumpkin instead of a snack?"  This sweet little boy is George, he was Alayna's teeter totter buddy everyday at recess.

Alayna hopped off the wagon and spots her pumpkin right away. Dariya didn't want to have much to do with pumpkin picking. She was heading for the wagon to go to the snack table...

Enjoying one final snack with our buddies
Ms. Ann will forever be etched in our hearts. 
We ♥ you Ms. Ann!
Alayna loves Ann so much that she let go of my hand and said, "No! Ann" and ran off to hold Ann's hand.

With sadness we say goodbye to the girl's teachers, therapists, friends and staff at IDC.  Thank you from the bottom of our hearts for loving our girls and teaching them so much.  We will miss you.


We are super thrilled with the staff and services the girls are getting at the school district.  Alayna had her IEP last week and is beginning to adjust to the school's preschool.  If you are new to following us, the girl's sped teacher, Ms. Juanita has a son of her own that has ds and my girls are like rocks stars to their family.  How awesome is that?  God always knows what is best.


Another HUGE bonus is today was the first time in 6 weeks (besides weekends) where I had my girls for a morning!   We played our hearts silly and Dariya even sported big girl undies all mornings with NO accidents.  Ah, it is good to have preschool only 3 days a week.  For us this is the best schedule for now.

Sunday, October 9, 2011

Happy 3rd birthday Alayna Faith!

Life doesn't get much sweeter than celebrating your special day.  You continue to amaze us with all you have accomplished in 3 years and amuse us with your silly antics. 


Alayna Faith you are a true blessing. 

You are a shining star.  You have streched us and taught us so many life lessons.  You have opened our eyes and hearts to orphans, especially with down syndrome, around the world and without you there would have been no Dariya in our lives...

To watch you grow and blossom makes me happy and sad all at the same time.  My baby girl isn't a baby anymore but instead a big girl (even if you do let me hold you like a baby sometimes just so you can giggle at me).

We pray that today and everyday you celebrate life to the fullest, follow God's path and serve Him and that you continue to soar!

Happy birthday sweet girl!

All our love,
Mommy, Daddy, Aidan & Dariya (yep you are a big girl  no more mama or dada)

Friday, October 7, 2011

Abandoned and rejected STILL!

A few weeks ago I introduced you to the Fristoes, another Reece's Rainbow family from Kansas City in my abandoned and rejected post.  They have been running their iPad2 & iPod touch giveaway for WEEKS and WEEKS now and have only made $1500 (take away the cost of the iPad and that is less than $1ooo).  They are still in desperate need of prayer and funds ($16,000).

Suzanne was born outside the United States as her father was on active duty with the US military.  As she wasn't born on a base (there wasn't a base in Turkey) US immigration is holding up their paperwork to search for her "alien" record.  Are you kidding me?  Please pray that they get this final clearance from immigration so they can file their paperwork with China to go get Clare!

I have had over 600 hits to that one blog post.  If only half of the people donated the $10 to their fundraiser they would be over $3000 now.  I know some of you donated and I am truly thankful and appreciate your support for this family. 

If you haven't taken the time to read their story here is a clip from their blog,  Our Chinese Butterfly
In Suzanne's words...
We still need $16,000 to pay the ransom on our daughter's life.

I am praying you will continue to Pray, share and donate. Every little amount, no matter how small is getting us closer to Clare.

DO YOU THINK YOU CAN HELP US???? It is easy, we are in great need of prayer. Prayer doesn't cost you much, just a little bit of time and will be greatly appreciated!! He will listen to our prayers! Please pray that the funds will come in, that my "Alien" file will be located and our I 797 will be approved and mailed to us soon, for patience and grace during all of this. Thank you

Spread the word. I have over 1000 friends on facebook, if everyone could spread the word, I would forever be grateful!! Blog about it, tweet about it, email your friends about it, and please facebook about it. Please ask your friends to spread the word or send them here to read and decide on their own. There is great power in masses.

Donate. Every penny counts towards saving our little girl. Every penny we raise gets her closer to her forever family, to her momma and daddy, that can't wait to hug and kiss her, her new friends, and a new life of freedom. She will be educated and she will receive the medical care she needs.


Look at this beautiful face, isn't she worth the effort??



end post from Suzanne.


This little girl and family have my heart. I didn't lose sleep over our adoption of Dariya but, I find myself up for hours praying on this family's behalf.   They are working tirelessly completing grant applications, seeking donors daily and waiting for immigration to grant them that one final piece of paper to file their dossier to China.

PLEASE, I am begging you to go over and donate $10 (or more) it's tax deductible, pray for this family, blog, twitter, FB about them whatever you can do to help get the word out. 

Satan will not win, Clare will be rescued, Won't you be a tiny pebble that makes ripples in her adoption fund?

Visit their blog here: Our Chinese Butterfly  Hurry their Ipad2  giveaway ends tomorrow night (Sat, Oct 8th) at midnight!  As October is Down Syndrome Awareness month and Sunday the 9th is Alayna's 3rd birthday she would be THRILLED if you made a donation to Clare in celebration!

Thursday, October 6, 2011

Thankful Thursday: Pumpkin, Chocolate chip cookies



Nothing says fall like pumpkins.  We love pumpkin anything: pies, muffins, seeds, cookies, coffee creamer you name it we love it.
Thankful for friends who drop in and bring fabulous cookies that the littles devour in a matter of minutes!

Tuesday, October 4, 2011

What is so "down" about down syndrome?

If you have been following our family you know we think there is absolutely nothing "down" about down syndrome. 

So what is up with the name?     Seriously couldn't they have called it... Cool syndrome?  Rock Star syndrome,  Or maybe we are more alike than different syndrome?

Dariya really wanted to know where the name down syndrome came from so we did some research.

John Langdon Down was born in Cornwall England in 1828.  At 25 he entered medical school, and after graduation he became an early advocate for humane treatment and therapy for the mentally handicapped.

He served as medical superintendent at the Royal Earlswood Asylum in Surrey, England, where he wrote the first paper identifying common traits among patients afflicted with what came to be called "Mongoloidism".
Dariya signs "more"
In 1958, French geneticist , Jérôme Lejeune discovered that Down syndrome was caused by an extra chromosome on the 21st pair. The French Academy of Sciences published his scientific work on January 26, 1959. For the first time in world history, his discovery established a link between an intellectual disability and a chromosomal abnormality.

In 1961 the editor of the British medical journal The Lancet proposed that the condition be renamed Down's Syndrome.  In 1965 the World Health Organization redesignated the name to Down Syndrome.


After studying all the research materials Dariya wanted to let you know that we aren't "down" because we have 3, 21st chromosomes, we are just extra cute! 
Don't forget about the Fristoe's iPad2 & iPod touch giveaway it ends this SATURDAY October 8th at midnight and they are still needing over $16,000 to bring Clare home.  Please, please, please go over and donate $10 and beg your friends to do the same.

Saturday, October 1, 2011

It really is ok!

Three years ago Jason knew absolutely nothing about down syndrome.  What little information I had about it was outdated from my bachelors degree in special education.

All that changed on October 9, 2008 when Alayna entered our lives.  We were forever changed at her delivery.  Not in a negative way as most people would think.   Don't get me wrong it took Jason several days to get over the shock of her diagnosis and to stop worrying about her future.

Our lives are blessed. 

Our lives are so much fuller, so much brighter and so much more connected to God and each other than they ever would have been if Alayna had been born without an extra chromosome. 

That little extra bit of genetic material is only one part of who Alayna is, it in no way defines her.  She is beautiful, loving, silly, smart, playful, bubbly, stubborn, feisty, cuddly, empathetic and the list could go on and on.

But, you see if God hadn't blessed us with this sweet girl....
 
Our eyes would NEVER have been open to searching Reece's Rainbow and God leading us to adopt this sweet, beautiful angel.

You see blessings sometimes come in small, unexpected packages.  Alayna only weighed 4 pounds 13 ½ oz.  But, the impact she has had and continues to have on our lives is enormous. 

October is Down Syndrome Awareness month.   It is also Alayna's birthday month.  We will celebrate next week with cake and ice cream and family just like almost every other family does for their child's birthday.  See here at our house, our girls aren't any different than Aidan who only has 46 chromosomes.

I am not a great blogger, or even a very frequent blogger these days (can't imagine why).  Some of our bloggy friends (on our blog roll) will be blogging daily about ds.  Hope you pop in and learn great stuff this month as I will.

Hopefully through our daily lives we have shown and continue to show the world that life with an extra chromosome is really ok.