A letter from Carrington's mama

I wanted to share this letter posted on Carrington's blog since so many of us are praying for her recovery:

http://carringtonscourage.blogspot.com/2011/03/letter-from-mama-burman.html

What was bittersweet for me was seeing the photo at the bottom of Reagan holding Carrington.  You see, Reagan was also recently adopted from the same area as Carrington- having lived in the same orphanage and then transferred to an adult mental institution before her parents were able to rescue her.  Mom and Dad feared Reagan would be the one in dire condition, praying that she would even still be alive by the time they were able to get her- they had no word on her current condition or even if she was still adoptable having been transferred already, and had been advised to choose another child in case something went wrong with the adoption.  That's where Carrington comes into the picture.  The Burmans chose Carrington, and then realized she couldn't just be a second choice.  They had to save her, too, not knowing her extreme health concerns.  God definitely had all this planned out!

Reagan was a favorite at the orphanage as well as the institution where she was transferred- she's a healthy 60 pounds and doing great. :)  But this shows the difference in care children receive- yes, both girls have Down syndrome, both were at the same orphanage in a poor area, but the caretakers have their favorites who receive larger portions of food and more attention.  Then there are those who are put in "laying" rooms receiving the absolute bare minimum if you can even call it that.

Looking at these sweet little round cheeks, you'd have no clue how frail and starved Carrington was under all those bundles of clothes.

You are a strong little girl, Carrington, and your life has only just begun... <3 Continued prayers to you, sweet angel.

And the winner is....

The winner of my CSN giveaway is.....

comment #7:  Team Lando said...

My fav springtime activity... I live in DC, so CHERRY BLOSSOM TIME!

Congratulations!!!  Please e-mail me at kaylinsmommy@gmail.com for your gift code and instructions!

Thank you to everyone who played!!  I look forward to doing another giveaway sometime soon!

And some more good news- little Carrington is making some slow steps in the right direction- yay!!  You will see a button to her blog on the top right of my home page- she is in need of prayers, and has been heavy on my heart along with Kirill.  I have been praying so hard for the both of them several times a day.

A little background on Carrington- she was recently adopted from a very poor region of Eastern Europe.  When her parents visited her in the orphanage, she would be bundled in winter clothing and they weren't allowed to remove it.  It wasn't until after they got her back to their apartment and undressed her that they saw how dire her health condition was.  Carrington is 3 1/2 years old and weighs ELEVEN pounds.  ELEVEN!!  My children passed 11 pounds around the age of 3 MONTHS old.  Carrington's parents immediately called their pediatrician and were able to fast track through customs to get her sent straight to the emergency room when they entered the US.  The sight of her condition brought grown men working in the ER to tears.  She's a fighter though, and has been very slowly tolerating small amounts of nourishment.  

Money is being collected to help the family with gas and grocery gift cards through this Chip It:

If you want to send a card/note/letter to Carrington and/or her family you can mail it to this address:

Cook Children's Hospital

801 Seventh Ave.

Fort Worth, TX 76104

C/O Carrington Burman Room 5418

If only...

Dearest Kirill,

I can't get you off my mind.  I was first introduced to you through a blog post, and honestly I can't remember which one I read first since I've been reading several, and each one just seems to enrage me even more.  You see, I read about your story and your hopeful parents working SO hard to bring you home, only to be DENIED- told that you don't deserve a family because of your extra chromosome... told that you are not "socially adaptable" due to your "medical condition".  I look at my own Evan and wonder how any human being could deny a child, ANY child, the right to loving and providing parents.  Evan has been getting lots of extra snuggles lately as I think of you, wishing you could feel the same loving embrace.

If only I could take that judge to visit the mental institution where you will be transferred if you aren't adopted by age 5 or 6.  I am willing to bet money she has never stepped foot inside this facility in her entire life.  Let her try to explain how confining you to a metal crib and providing the most minimal amount of food and attention can be a better environment for you than the loving home here in the US, where you would attend school, receive therapies, and enjoy LIFE.

If only I could take that judge to visit Shepherds College and show her that people with Down syndrome CAN be successful and independent citizens who contribute to society.

If only I could show her several businesses OWNED by people with Down syndrome.

If only she could walk to our bus stop down the street and not only see everyone cooing over Evan, but also see our friend Riley board the bus with all the other kids- Riley is in 4th grade and also sports an extra chromosome.

If only other children and adults with Down syndrome could come to court there in Russia and advocate for themselves as well as for you... tell the judge with their own words what life is like here in the US and what they CAN do... what YOU can do if only given the opportunity.

I will continue praying for you, Kirill.  Your story is spreading, and God is listening.  Hopefully the readers here will pray for you, too.

With much love,

Two more favorite things! One for infants/toddlers and one for big girls!

Ok, so these two items have absolutely nothing in common, but I've been wanting to add both of them to my list, so I figured what the heck, I'll just put them in one post!

First item:  Fisher-Price Learn and Move Music Station

I had the older model of this toy which actually had a third position which was used first as a baby gym for baby to lay under and play with dangling toys.  They eliminated that position and kept the two piano positions which are still wonderful.  The sitting piano is a great motivator for those babies working on sitting.  It's difficult to find toys for small ones to use while sitting that will keep their attention!  I used to sit Kaylin and Justin in front of it and prop the Boppy around them in case they would fall back (sadly we got rid of this toy long before Evan was in the picture!).  

And I am a HUGE fan of toys that transform so you get longer use out of them!  So this is a great motivator for standing as well.  Just make sure it is pressed up against a wall or solid piece of furniture since it will slide on slippery surfaces or carpet if baby is pushing against it.  I absolutely loved this toy!

And for the big girls:  B. Pop Arty! Funky Pop Beads

Kaylin received these as a birthday present this year for her 8th birthday, and they are AWESOME!  I love the many shapes and colors as well as the bracelet bands and other accessories to allow so much creativity!  And as pop beads you simply take them apart and can make new designs over and over again!  No worrying about stringing beads and then watching them spill across the floor while you are trying to tie tiny knots.  So frustrating!  This can be a wonderful fine motor activity for the girls out there needing to strenghten their skills as well.  

3/21- World Down Syndrome Day- and a lesson or three for ya ;)

March 21st marks World Down Syndrome Day- 3/21 to acknowledge the 3 copies of the 21st chromosome carried by those with DS.  The 21st is the smallest of the 23 chromosomes.

World Down Syndrome Day is about raising awareness and acknowledging the achievements of those wearing designer genes.  It blows me away how far society has come, yet it sometimes feels like we still have a ways to go as far as acceptance is concerned.  What amazes me are how many college programs there are available for those with intellectual disabilities- this is AWESOME!  People with DS are living on campus, learning how to be independent and successful in the work force.  ThinkCollege.net is an amazing resource providing a wealth of information for those with intellectual disabilities who wish to attend college.  The future is SO bright!

In the 1960's, institutionalization was considered the best option for babies born with DS here in the US, and many parents blindly followed their doctor's recommendation.  I can't imagine the heartache those parents must have felt, letting go of their sweet baby.  Sadly in Eastern Europe today, babies are oftentimes taken from the parents regardless of their wishes, and sent away to orphanages- transferred to institutions once they reach 4-6 years old.

In 1964, two scientists named Dr. Stedman and Dr. Eichorn studied the negative impact the institution had on children with DS.  They found that the lack of care and stimulation lowered cognitive ability more so than the DS itself.  This breakthrough slowly convinced medical professionals that children with DS have emotional needs just as anyone else, and their potential is higher than many would believe.  As doctors began treating babies and children with DS as they would treat others with only 46 chromosomes, the life expectancy increased dramatically.  Even as late as 1980, the average life expectancy for an individual with DS was a mere 25 years old.  A huge part of this revolves around the fact that about half of all babies born with DS have congenital heart defects. Another increased health issue in DS is an intestinal blockage at birth.  Without life saving surgery, many didn't live past their first birthday.  Also add in those sent to institutions where health care and quality of life were far less than stellar.  Today the average life expectancy for a person with DS is about 50-55, and I'm sure we will see this number continue to rise as our children are receiving proper care from the very beginning.  In 2008, the Guinness record holder for the oldest person with DS was awarded to Bert Holbrook who was holding strong at age 80. :)  He was raised at home instead of being sent to an institution back in 1929, when the average life expectancy was 9 years old.

In 1972 the federal government passed the first legislation guaranteeing a free and appropriate education to ALL students with or without disabilities.  This is known as IDEA- Individuals with Disabilities Education Act.   Later, teachers would be learning about mainstreaming and inclusion.  As children were being placed with their "typical" peers, graduation rates rose consistently.  Amazing, eh? :)

Even though our education and medical fields have expanded immensely, people's attitudes don't always follow along.  People still drop the "R" word; kids are still picked on for being different.  This is what scares me most regarding Evan's future.  I have faith he will blossom into an independent and successful young man, but I won't be able to protect him from the ignorance of others along the way.  I only hope my words here haven't bored you all to tears ;) and will hopefully change the attitudes of some regarding the treatment of people with disabilities.

Don't forget to pause the music player at the bottom of the page before viewing this beautiful montage :)  Hey, did you enter my Giveaway yet?  Who wouldn't want $35 of free money!!  Go enter now!  If you are signed up as a follower of my blog you get to enter twice!

Luck O' the Irish, and MY first Giveaway!!

We enjoyed a most BEAUTIFUL day yesterday for St. Patty's Day- buckets of sunshine and temps in the low 60's- perfect springtime weather just a couple days shy of Spring's official entrance.  My little leprechauns were excited to boast their special St. Patty's Day shirts for this festive occasion and of course mama needed pics!

Justin came home bursting at the seams with excitement about the leprechaun activity in his classroom. ;)  Kaylin has been into major rationalization lately, thinking aloud about how tricks are done on TV and the such.... as Justin was finishing his tales of leprechaun mischief, Kaylin whispers to me, "I think maybe it was the teachers..." yet she was still quick to check the safety of her bedroom to be sure those sneaky leprechauns didn't dare mess anything up! ;)

Before the ritual homework as soon as they come in the door, we ran outside for some fresh air... just before Evan's nap (which he's still fighting as I am typing).  This was Evan's first real time on the swing, and as you can see from the photographic proof, it was pure torture.

 Ok, that one looks like he could possibly be tortured, but rest assured, he was smiling big ;)

Apparently those sneaky leprechauns got into the pancake batter for dinner and turned the pancakes green!  I almost cracked up at both kids' reactions- completely opposite of course!  

Justin was the first to come in the kitchen to see what was for dinner.  As he examined the pile of pancakes on the plate he made no reaction whatsoever.  I was baffled at first- I was waiting for this huge reaction but nothing.  Then it hit me- the boy is color blind!!  I ask if he notices anything different about the color of the pancakes, and he noted that some look different- I think depending upon how dark they were cooked, though they all looked pretty much the same.  He had no idea. :)  It didn't dawn on me at first since 90% of the time, you'd never know he's color blind.  Teachers in school very rarely notice since he can determine the standard "crayola" colors just fine.  His color blindness is quite obvious when it comes to light shades and dark shades- he gets all confused.  He has officially failed the color blind test at the eye doctor but we knew several years ago.  Evan also has a 50% chance of being color blind since the gene is passed down from the maternal grandfather- my dad is color blind also and I am the carrier.  We'll find out in a few years if Evan is color blind or not. :)

Back to the pancakes!  Kaylin comes to the table when I announce dinner is ready, and she FREAKS out!  "The pancakes are GREEN!!" she is about shrieking in disgust, wanting to know what is wrong with them.  Silly girl!  Both kids put down many pancakes so obviously it didn't affect the flavor. ;)  Thank you, Amy V. for the idea!  Next year I want to make Amy V.'s version with chocolate chips to look like mint chocolate chip. :)  Justin will be especially thrilled- he is a major chocoholic like his mama.

And now for my first GIVEAWAY announcement!!  CSN Stores is giving out a $35 gift code redeemable at any of their 200+ stores!!  Looking for a new outdoor playset?  There's a store for that, too.  All you have to do to enter the giveaway is leave a comment on this blog post about your favorite springtime activity!  Add a separate comment if you are a follower of my blog, and yet another if you share my blog on Facebook!   A random winner will be chosen through http://www.random.org/ based on your comment number- if you leave an anonymous comment without logging in, please be sure to leave your name and e-mail address so I will know who to contact if you should win.  This giveaway will run through next Friday, March 25th.  May the luck O' the Irish be with you! ;)

Just another manic Monday... (ohhh... ohhh)

While I wait for Evan to get to sleep for his morning nap *crossing fingers* I thought I'd come relax and blog.  Yes, the two usually go hand in hand for me- this is quite therapeutic to get my thoughts out and unwind.  I feel like I could use some therapy to get through this day in particular!

I. Hate. Daylight. Savings. Time.  Ugh, what an adjustment to get our bodies accustomed to one little hour time change.  Logistically, it doesn't seem like it should be that big of a deal, but today all 5 bodies in this household beg to differ!  Yesterday, the morning of the big time change- didn't seem like it really phased us yet, but today, Monday morning, came with a vengeance it seemed.

Kaylin and Justin spent the weekend at MomMom and PopPop's house- have I expressed just how much we love MomMom and PopPop?? :)  Mike and I enjoyed a much needed, restful weekend- it really felt like a mini-vacation!  Waking up AFTER the sun is shining brightly, not the usual flick of the bathroom light just outside our bedroom door and then a little person insisting one of us go downstairs with him.... no, just laying in bed, waking when your own body decides to wake.... silence.... warm sunlight shining through the curtains.... no need for eyes to adjust to artificial lights being switched on in the darkness.... ahhhhhhhhhh it was SO nice.  Evan enjoyed the mini-vacation also, since he, too, enjoys sleeping in the mornings.  Little did I know I would need this little recharge weekend to get through Monday's mania!

The report from MomMom and PopPop stated that the kids woke early both days (insert giggle here)- around 5:30 AM Saturday, and 6:30 AM Sunday morning with the time change.  Since they both woke at 6:30 on Sunday, I didn't realize how incredibly difficult it would be to get them up by 6:45 on Monday!  Kaylin's alarm went off at 6:45, and she immediately shut it off and went back to sleep, assuming the alarm was wrong and went off too early.  Much to her dismay, Mommy came in to assure her it is the correct time.  Kaylin was in HYSTERICS.  "But it's DARK outside!!  I'm SOOOO tired!!" Tears flowed and you'd think this was a major trauma!  After some much needed snuggles, over to Justin's room I went.  That boy was like a rock; it took quite the effort to wake him, but after he realized the time- well after 6:00 when he's told he must WAIT to get up, he immediately sprung up like he didn't want to waste the day away!  Such polar opposites my kids often seem to be.

Evan was the lucky one, allowed to sleep until 8:00 today- usually I get him up around 7:30 on a school day if he hasn't been woken by his older siblings before then... since we need to get up and dressed to walk down to the bus stop.  Daddy hung around this morning to let Evan sleep a little longer. :)  I still needed to get him up at 8 though, since Miss Patty was coming for physical therapy at 9.  Evan did NOT want to wake up either!  He heard me walk into his room and started stretching a little, but immediately curled back up in his crib and snoozed away.  I scoop him up as I usually do when I get him up from a nap or night's sleep, and he settles right into my neck, back to sleep.  This has become our little ritual- picking him up and him curling into my neck, his little arms locked around me.... this is my most favorite snuggle for the day.  Even if we're in a rush to get somewhere- I MUST have a snuggle before laying him down to change him. <3

I debated about how late to let Evan sleep since our afternoon is going to be a bit chaotic today- Kaylin and Justin have a half day at school today, and Kaylin has a well-visit at the doctor's office at 1:30.  Usually when Evan sleeps later in the morning, that's a good indicator that he will only take one nap for the day, going down around 1:00.  Ut oh.

While Miss Patty was here playing with Evan, he did seem a little tired, and he also was acting a little sleepy through breakfast right after she left, so at about 10:30 I took him upstairs to change him and let him settle for his nap.  Another diaper change and many binky retrievals later, it's now 11:50 and he's still awake.  Argh.  So hoping he will take a little rest this morning since we won't get home from the doctor's office until about 2:30.  That will make for one tired Evan!  One tired Mommy is a given. ;)  Happy Monday, everyone- 6 more days until SPRING!!

P.S.- it's now 12:00 and I believe Evan finally crashed... WHEW!

Wordless Wednesday!

Evan dancing to Baby Signing Time (the sound is reallyyyyyyyyyy low for some reason)



....and a cute shot of him enjoying my wonderful $3 purchase from the last consignment sale

Favorite Thing #4- Baby K'Tan Baby Carrier

The Baby K'Tan carrier was developed by two couples who each had a child with special needs.  I had used a Bjorn carrier with my older two, but was advised not to with Evan due to his low muscle tone.  With the Bjorn, the baby's legs are spread apart, causing them to "splay" and it is recommended to avoid this position as much as possible for babies with low muscle tone.  Instead, babies should be carried in a sling type carrier, keeping their legs together.

Having never owned a sling before, I was a bit apprehensive- I've read how complicated they can be to put on and get sized correctly depending upon how big baby is.  The Baby K'Tan takes all that away- you simply buy the size you would normally wear for clothing (it does tend to run slightly large- I was wearing size L tops when Evan was first born and I was comfortable in a size M carrier).  There is nothing to adjust- simply follow the easy to read instructions depending upon which of the 7 positions you wish to carry baby.  I was able to carry Evan in the adventure and hug positions for quick walks to and from the bus stop since I could adjust how wide the fabric was between his legs.  But for outings, I usually used the explore or kangaroo position, and it was easy for him to doze off all comfy cozy.  I never used the hip positions due to the leg splaying issues.  They even claim you can carry twins together with this!

If the material becomes looser than you like, simply run it through the wash and it will tighten the fabric again.  There are many colors/fabrics to choose from.  I received many compliments while wearing Evan in this carrier since it looked so comfy for him.  It has been quality and safety tested to hold babies from 8 lbs all the way up to a 35 lb toddler.

Know me before you judge me

Just wanted to share this article from National Geographic Kids:

I Have Down Syndrome- Know Me Before You Judge Me

Beautiful girl, beautiful words.  Kudos to National Geographic for providing this article to educate our children! :)  I pray Evan is welcomed into an accepting environment when he begins school.