31 for 21: The Medical Community, Down syndrome And Dr Julia Kinder

I couldn't think of a better way to close Down syndrome Awareness month than by highlighting a shining star within the medical community. Most of us have heard of Dr. Brian Skotko, and Dr Pueschel. They are both huge names within the medical community. I have had the pleasure of meeting both gentlemen. Dr. P is Em's specialist and raised a son, Chris, who had Ds. Brian has a sister with Ds and does us a wealth of positive advocating within the medical world.

 But today's post is about Dr. Julia Kinder. 

She is a wife, mother, doctor, and for lack of better wording... one of us. Her beautiful daughter Ella was born with Down syndrome!

Since the birth of Ella , Dr. Kinder has been on a mission to change the way doctors are educated when it comes to delivering a diagnosis of Down syndrome to parents. She admits that doctors are not adequately trained. 

" My medical training did not prepare me for understanding what it would be like to have a child with Down syndrome or how I needed to care for her."

 Right now doctors are not receiving enough education. They do not  fully understand Down syndrome and most still have very outdated and bleak takes on it. Most of us already have experienced first hand the lack of knowledge within the medical community. Unfortunately, doctors not always but most often, paint a very gloomy future for our children. 

My own experience was not good at all. I was pegged as a challenging patient because I asked a lot of questions. Looking back now, I can see that I made my doctor uncomfortable because she did not know how to answer my questions! And how could she, if she herself wasn't trained properly . How could she give me hope if Down syndrome was a mystery to her? 

I was consistently told that even though the baby looked good, during ultrasounds, something catastrophic could still happen! Talk about being a bubble burster! I left every doctors appointment confused and scared.
No wonder 9 out of 10 woman choose to abort their child! 

Now, imagine what it would be like if our doctors understood Down syndrome. Imagine how a diagnosis would be delivered! It would not start with the words "I'm sorry" but instead , CONGRATULATIONS!!!" And , "It's going to be Okay!!!"

 I never once heard those words from my doctor.

This is Dr. Kinder's mission. It's a mission that could save the lives of countless babies! Ease the fears of parents and change the hearts and minds of thousands of new doctors!

Dr. Kinder currently has a petition in place to require complete education on Down syndrome for third year medical students. I've signed it and I think advocating for this petition on this last day of October is very fitting! I'd love to see our beautiful community rally together and  add a boatload of signatures!

Click here to  read and sign the petition, and please share. Everyone should know about this. It is our responsibility as parents of children with Down syndrome to pave a better path for others. We know how amazing our children are. The medical community should know too!!!

Education is the key! 

Updated and accurate education must be mandatory to make a difference!

Please sign!

And after you sign "like" Dr. Julia Kinder's facebook page, Upside of Down.

She is truly a shining star, doing great things for our children!


 

31 for 21: The IEP

This picture has nothing to do with this post or IEP's in any way. Em just thought she looked cool and wanted me to post it.

I . E. P.   Individualized Education Plan
Three little letters that can send shivers down the spine of any parent that has ever had to endure one. I've been terrified of them since Em was only a few months old and I learned that one day I would have to sit with a group of people who would have a lot of interest in my daughters education and what she would and would not receive. 

I've heard horror stories about lawyers being needed to guarantee the child got what was legally theirs. Moms being driven to tears by uncompassionate and all to often ignorant teachers.

I would get a stomach ache just thinking about the day it would be my turn.

Then the day came, and I waited for the bomb to drop. I waited for something to piss me off. 

Nothing bad happened. Em got all her therapies, she didn't lose anything, she was in the best school for her needs. Her classroom has both typical kids and kids with special needs. Her team of therapists are from heaven and her teacher is an angel. 

Today was her IEP for the upcoming year. We reviewed where she was last year, where she is now and where we want her to be by the end of the year.

All this was dicussed in between fits of laughter from her teacher, ST, OT and PT as Emmie had them rolling on the floor and wiping tears from their eyes. They all absolutely adore her. 

I know parents worry about school and IEP's and getting all your child deserves and is legally entitled to. 

And a lot of the time it's a battle but sometimes it all just falls into place. 

So there is hope for a great IEP day. 

Do I worry about next year when she will have to move on to another school? You bet your bottom I do. 

There are two schools in my neighborhood. I'm not sure which one she will have to go to, but one has contained classrooms... that's not happening! She's not in one now so we are not going into one. There may be a rumble down the road for us, but today we just enjoyed a really fun IEP day!



 

31 for 21: 1,2,3, FOUR!!

The absolute miracle and wonder of this child never wears out. Each day she brings us joy overflowing, and endless thanks to God above who knew we needed her more than the air we breath.

Today Miss Em is four! This little pint of peanuts is the glue that holds us together. She is the rock and she is the one we all go to when we are feeling weak. 

I don't know what we would do without her and never realized how incomplete all our lives were before her.

HAPPY BIRTHDAY EMILIA FAITH!!!!!! YOU ARE SOOOOO LOVED.

 

 

31 for 21: And they danced...

I already have tears in my eyes and I've barely started to write. As most of you know my oldest two girls dance. They are beautiful and I love to watch them. Emilia also dances and I cannot wait to get her into a dance class!!!

Last night the school/ company my girls dance for had an amazing event. It was they're second year doing this and it just keeps getting better. It's called Together We Dance. 

Dancers in the top of their field are invited to take the stage together in one amazing and breathtaking performance. 

Last night we had these beautiful dancers to blur our minds of the daily stresses and take us away to places we could never get to on our own. I sat spellbound and honestly, I don't think I exhaled for two hours.

My daughter Olivia performed, and after her performance, she from the wings and I from my seat, secretly texting, "OMG", "Did you see her" , and "this is amazing"

We watched Daniel Ulbricht, from NYC Ballet, jump like no other. I actually gasped out loud at his leaps. And wondered how long he could just linger in the air.

RI native Greta Hodgkinson and now prima ballerina at National Ballet of Canada , brought me to tears not once but twice with her grace and beauty.

Adiarys Almeida, Boston Ballet, left me and my daughters with our mouths hanging open. She danced Pas de Deux from Don Quixote. I've never seen anything like her.  

 

And we even had Beckanne Sisk, Ballet West,Utah, from the show Breaking Pointe!  She blew us away with her performance , which  happened to be one of my favorite variations, pas a deux from Esmeralda. I could have watched it over and over again.

 The applause was heavy and long and deserved, but the beginning of the show, topped it ALL!

You see the very first dance of the night belonged to the adaptive class that Festival ballet has. Eight dumplings all sporting an extra chromosome opened the show ! They're song, Let's Dance, got the night started. They were enchanting! They knew their marks, they looked fabulous, and not a bit of stage fright in any of them. They smiled and waved and corrected each other (I flippin love that). Every one of them enjoyed their time in the spotlight and when the music stopped the endless applause and whistles began. The audience showed their delight and the children inhaled it! They bowed and blew kisses and they owned that stage.

They danced last night with the best of the best. Thank you Festival Ballet Providence for making that possible!!! Thank you for putting our children out front where they belong! 

31 for 21: APPLES!

Everyone loves apples!!!!!

And apple picking!

And bumping into some dear, friends!

Now that's good for the soul!!

31 for 21: From Em

It's me Emmie! Mommy said her head was about to explode.... I have no idea why!

Anyway, I thought I'd do her a favor and post for her today. I know she's trying to post something about Down syndrome everyday. 

So, today I want everyone to be aware that yes I have Down syndrome, yup I drive my mom bonkers sometimes, and don't  I make a great monkey face???

Mom says that Down syndrome isn't nearly as scary as she thought it was going to be. I think that's a good thing because I don't think I am scary at all,hehee!

See ya, I'm going to go see if mom's head exploded yet.  

31 for 21: Not Everyday is a great Day! And That's OK!!

Some days are picture perfect, ya know? Those days where everything goes smoothly, or those days that are so much fun you just don't want them to end.

But not every day is like that.

Not every day with Down syndrome is like that.

And for me, today is one of those days that I'm not really getting that  warm and fuzzy feeling about.

As lucky as I am that Em was born without any health issues, sometimes I /we forget she was born with delays.

 And today those delays are kicking my butt!

Today has been exasperating and frustrating and has put both of us in our corners crying at one point.

Some days, there is no pause between one fiasco, disaster, misunderstanding, miscommunication or absolutely no communication between me and Em. Some days it's just a constant battle of, Discipline - VS - She just doesn't understand.

Do I put her in the corner or put her in my arms.

Do I walk away for a few minutes, or yell, and regret it immediately...

This post is me walking away for a few, to collect my thoughts. To get a few minutes away from the screeches, the objects flying around, like chairs and sippy cups, dishes, toys and videos and anything not nailed down.  Em's a thrower and some days are much worse than others. We've all learned to tuck and roll when she starts throwing.

This post is my time out. Because honestly we all need one once in a while!


The thing with days like these is just that.... they're days. Moments that pass. Thank God

Oooo, I'm in trouble today!!!

 That's right Em , you are in trouble today.And that's OK!!!
Tomorrow is another day :)

31 for 21: Potty Training

Two of my least favorite words are "potty training"! Why? Well, for starters I just really don't like doing it.  It was okay when my first, Olivia, came along.  I mean everything is new and fun with your first. And then Sophia came along and , at least I knew what I was doing.  By the time Bella was born potty training was getting a little old. I guess I turned into a procrastinator because one day I just found her on the big girl toilet. Guess she was tired of waiting so she trained herself... what a good girl!! Then came the boy!!! Good Lord, I think he was trained the day before he started preschool!  Talk about calling it close!

Then came Miss Em and well, what can I say! This child gives a whole new meaning to the word frustrated!

We have the potty books, the potty video, the sign for potty, the potty chair, and the potty dance. We just have no potty!!!

Oh, we have potty, potty on the kitchen floor, the living room carpet, we have potty beside the potty chair, and we occasionally have some poop too... :(

Miss Em can sit on the potty until it's part of her cute bottom, and nothing. She sits on the potty before her bubble and it never fails , as soon as her big toe hits the water she pees! "sigh"

I, on the other hand have completed Miss Em's potty training course with flying colors! She comes to the potty with me and signs potty and we wave goodbye to it. And I can tell she is so proud of my accomplishment. We wash hands and she leads to the way to our next adventure.

I know it will all come when she is ready. Just like her words!!! Which by the way are COMING, beautifully!

And I know she won't be wearing diapers when she twenty. But you know what. If she is, she is. It will be an honor to care for her in which ever way she needs it, for all the days of my life!

Here she is passing on her potty wisdom to someone who obviously needs help!

 

Oh Miss Em we love more than words can say!!!!

31 for 21: True or False

Day number two and I'm still in! LOL
Crazy day of running everywhere! Anyway here's a true or false question.

A lot of people I meet usually assume that because Emilia has Down syndrome that she is always happy and that as her mom I won the prize, grabbed the golden ring and hit the lottery with a child who smiles constantly, never gets upset and just goes with the flow. 



So what do you think? Is that true? Are people who have Down syndrome always happy???


ANSWER....

FALSE , FALSE, AND DID I SAY, FALSE

Nope, Miss Em does not wear a perpetual smile. She gets mad, and has some whopper tantrums. Just like any other kid.



BUT ...

 
She rebounds quickly!

31 for 21! DAY 1 ...ALREADY??

Here we go again! October is here and that means one... I mean two things. The first is that in 21 days my Dumpling, Miss Em will be turning FOUR!!! That is truly unbelievable! Can't even begin to try and figure out where fours went to so quickly. All I know is that we are a billion smiles and a gazillion laughs wealthier!

She can't believe it either!

The second thing is it's Down syndrome Awareness Month!  I will be attempting to post every day during the month. I know you regulars know how it works and will be posting with me!!  There's always a chance to reach out to the new moms and families, or the people who don't know about Down syndrome. People who still think it's an awful fate...hehehe. It's not!! Surprise!! 

Stick around and I'll show you how fabulous my daughters life is!!!!
And how even more fabulous our lives have become because of her!

Happy Birthday Liv!

How come we can't figure out how to make time stand still? Just for a little while.

How do you go from this to this, in just a blink of an eye?

Happy 15th!!!! Birthday Liv!!!!!!

Love you more,
Mama

Teamwork Tuesday: This is Beauty

This is Arina

This little girl is waiting for a family. I think she is exquisite!!  

Do you see a little girl with chopped hair, crossed eyes, and Down syndrome who is poorly dressed and a world away? Do you see a little girl who you cannot relate to? A child who is not your responsibility. A child who you cannot possibly help?

Look again.

Don't you see her hair long and curled, with a beautiful bow? Don't you see those big brown eyes twinkling with mischief? Can't you picture her in a party dress like the Princess she is?  She is a six year old little girl , just like any six year old little girl...if given the chance. She is an orphan and she is our responsibility. She is an orphan because no one wanted the responsibility, no one wanted to love her, and no one saw her beauty. 

We all have the ability to help in some way.

We can all pray, share and/or donate. 

And we all have the ability to not look away. We can see her beauty, if we look.
 


 Arina's info
Date of Birth: May 31, 2006
Gender: Female
Eyes: Brown
Hair: Dark
Nature: Calm
Diagnosis: Down syndrome

This beautiful Arina needs a mama to love her and help he ber all she can be. She has dark hair and dark eyes. She does not have a heart condition, but her medical records indicate she has some kind of bacterial *difference* in her kidneys. She is allergic to eggs, citrus fruit, and red vegetables. Her kidney dysfunction may be a reaction to eating these items. She will need to be seen by a specialist when she gets home. She is also farsighted and will need corrective glasses. But she is SO beautiful and so deserving of a family to call her own!

SINGLE MOMS WELCOME! FULL MEDICAL INFO AVAILABLE!

$7300.83 is available towards the cost of my adoption!

 

 

I Believe In Fairies, By Emilia Faith

Oh I believe in Fairies. I've seen them for myself.  They live in my back yard and play with me on warm summer days. They jump and run,and dance along side of me. They are gentle and shy and always so kind.

They come when the sun is getting low and stay for just a short time. But oh what fun we have together!!

Mama says they live underneath her flowers where it's cool and shaded. 

This looks like a nice place to live. Any fairies in here??

OH MY, I think I just saw one!! I hope I didn't scare her!

I think I see one behind the Morning Glories

THERE SHE IS!!! Just like mama said!! Oh she is so cute! And just my size! I think she wants to play with me.

We are clapping hands together!!! And singing a song. I just make up the words as I go along. hehe

Uh oh , where did you go little fairy???

THERE SHE IS!

She wants to play hide and seek!!  Gotta go, I'm it!








 

Samantha and Kristina: Teamwork Tuesday, Some Posts are Tougher Than Others

Samantha and Kristina. These two Dumplings and I met some time ago. No, not in person, but on Reece's Rainbow. I fell in love and became their Prayer Warrior. I thought they were absolutely adorable. Not to mention they share my husband and son's birthdays!

I wondered if they found comfort in each other.  I wondered if they even knew they were sisters? Did anyone tell them? Did they just sense it? Did they feel a special connection? A different connection than with the other children? 

I took comfort in the fact that wherever they were at least they had each other.

Last winter my dear friend Jane traveled to Orphanage  50 . It was thought that these two sweet sisters were there. I was beyond excited to think Jane would get a chance to hold these girls, and whisper to them, that people do love them, that we know they are out there, and are trying to get them a  family. I was also excited that she would bring them a gift from me, crayons and a coloring book. Oh I delighted thinking how excited they would be. A new box of crayons!! Would they love that smell too. I can still remember how I loved opening a new box of crayons when I was a little girl, promising myself to be extra careful not to break any tips and to put them all back in the exact same spot I took them from.  

But news came from Jane that the girls were no longer there, and no one knew where they were. I was heart broken.  And my mind went to dark and scary places. I was thinking the worst. 

Then a miracle!

A photo of Samantha! Alive and well!! And much bigger than her picture on Reece's Rainbow!! A FB friend had actually seen her, held her! I could get lost in those amazing eyes!!!

The sad news was Kristina was not with her. But she's out there!! And waiting. Why they would separate sisters is beyond my comprehension. But I'm not giving up hope that they will someday be reunited, by a family who loves them and wants to hold them forever!

Any family would only benefit from calling these two angels their daughters.

Kristina

Samantha(older pic)

 
 November 22, 2004 &

November 27, 2005

 

HELP, WE HAVE ALREADY BEEN TRANSFERRED!

 

Samantha (the oldest), on the left:  Brown hair and stunning green eyes!   Microcephaly, mental retardation, crossed eyes, physically capable, friendly and affectionate girl, will do well in family environment.  High likelihood of fetal alcohol syndrome. 

 

 

Kristina, on the right:  cognitively delayed, physically capable, helpful, friendly, likes to play, good girl.

 

 

$120.00 is available towards the cost of my adoption!

BLACK AND WHITE

Over 800 children have been saved because of Reece's Rainbow.  So many are still waiting.
Could they be waiting for you?

It's That Time!

Our Annual Buddy Walk is getting underway!!! It's crazy how we all look forward to this day. If you ever told me this would be one of my most favorite days of the year, I would have died laughing! But this little Dumpling just tuned our world and our thinking upside down!!!!! Thank God!!!

Here she is at last years Buddy Walk.  I'm totally convinced that she thinks we are all there 'just" for her. 

We are in fact there because of her.

The Internet itself is not a big enough place for me to express what Em means to us. 

This pint sized bundle has single handedly saved the day more than once. She is our strength.  As she so innocently goes merrily along her way with a smile and a giggle , she has no idea how she lights the way for us.

She is our world, our everything!

And on September 16th we will be celebrating Emmie and all people with Down syndrome and the magic that goes along with it!

Our Buddy Walk will be at Goddard park in Warwick RI! All are welcome to walk with Team Emilia Faith!!!!

And this year anyone who donates through our First Giving page will receive a Tshirt and lunch! 

Please, whether you are near or far please consider donating to the DSSRI through our page. The DSSRI is devoted to helping, supporting and educating! They are a constant support to all who need them. And a much needed organization. They rely totally on donations to keep doing the good work they do .

Click HERE Emilia's page and to donate!
Thank you1!!

Peek a boo

 I see you!

A Shared Post of the Utmost Importance

Two little ones in the most desperate need of help. Two little boys who need a family now.

I did not want to take the time to rewrite what was already written from the heart of someone who knows how much distress these boys are in.  This is Julia Nalle 's post. She writes at Micah Six Eight. 

Drowning in Tears

Over two years ago I saw two little boys on RR and fell in love. The very first time I saw their faces I was captured by their sweetness.  I'm a sucker for boys and these two take the cake!!   They were both in the same orphanage and could be adopted together.

I rejoiced the day that they both were moved to the My Family Found Me Page.  They were going to be adopted!! 

But it was not meant to be.  After six months of sitting on the My Family Found Me Page... After six months of growing older... less adoptable... they were dropped. 

Ever since then I have begged God to send a family or two to go get these sweet loves.  Every once in a while I have posted their pictures.  Prayed some more.

My one consolation was that they weren't in a place like Aaron's. 

At least so I thought.

Yesterday I was reading the blog of Renee who is currently in country.  They were meeting their little guy and where he is located is most definitely NOT in a very nice place.  You can read about their experience HERE.  It's not quite to Aaron's level but close.  Too close for comfort.  As they were meeting their little guy they recognized TWO LITTLE PRECIOUS RR BOYS... She was describing these boys and I was interested in knowing who they were.

 I didn't recognize the names so when I clicked the link to see who they were I about fell out of my chair.  They were my Sasha and Niko.  WHAT IN THE WORLD???  I confess.  I began to sob hysterically.  I wept for hours.  I wept for two little boys who are desperate and needy and PLEASE SOMEONE GO GET THEM!!  GET THEM OUT!!!  PLEASE!  I can't type this without the tears pouring down.  They HAD BEEN transferred from the same baby house Aaron was in to a decent older child's internat.  But that place closed and they were transferred AGAIN and this is where they ended up.  Renee's little guy is battered and bruised and desperate to get out too.  SO ARE THESE TWO BABES!!

THESE ARE MY BOYS...

Sasha   Now called Everett... 

Niko - now called Olson...

PLEASE READ THIS... PLEASE SOMEONE GET THEM OUT!!!

FROM RENEE'S BLOG ABOUT EVERETT:  This morning, one of the little darlings from RR snuck up next to me and whispered "mama?" and wrapped his arms around my neck, climbing into my lap before I could even answer. He's lost a lot of weight since his RR picture. His face is very thin. His body is long and lean now, tanned dark. His eyes are serious, searching and eager to connect. Over and over, he slid up next to me, easing into my lap as quietly as he could, before someone would snatch him out or fuss at him in Russian (the workers and older kids not us of course). If ever a little boy wanted a mother- it's this one. Actually, it's every one of the boys we met in this groupa, but this one especially.

Sweet and gentle, kind and easygoing. That's how I would describe him. When Moxie's stroller wheels got stuck (she was the entertainment for the boys, they all fought/competed/cooperated to push her around nonstop the entire time lol), he knelt down and fixed them. He didn't push to get a turn at the handles, but stayed close to us, looking into our faces, eager to smile and talk to us when we could. His touch was gentle, his responses quick. He is delayed but he is absolutely darling. His name on RR is "Everett". Chances are, I'll get to spend the rest of the month getting to know him- but I'm giving ya'll the heads up- this kid needs out of this institution ASAP!!!!! He would be great in a family- easygoing, cooperative, and soooooo very desiring of being loved. If any of you mamas are looking for a cuddle bug, Everett is the kid for you!!!! He's so thin- he needs some good food to plump him up- it breaks my heart to see his ribs.

Then she met this one...

FROM RENEE'S BLOG ABOUT OLSON:  Then up comes a little chatterbox, who has the most adorable slight lisp I've ever heard :)  He's Olson on RR.  He's got some meat on his bones- a little bit of a pudge at his belly, looks healthy and good.  He had some issues medically as a kid, but apparently, that's resolved now.  You can see the scarring on his torso from his surgeries.  He runs, plays, hoolahoops and does everything a 6 or 7 year old should be doing :)  He was very curious about what we were doing, talked to us quite a bit, and seems like he is very confident and friendly.  I hope I get to get some new pictures of both he and Everett- they've changed quite a bit since the pictures posted.  Everett is thinner and more tan.  Olson is starting to look like Bo Duke from the Dukes of Hazzard- he's absolutely adorable.  Got the cutest eyes and sweetest personality I've seen, quite entertaining :)   He was a favorite at the babyhouse and so we can get all kinds of info about his growing up, because the babyhouse he was in is very pro-adoption.   

----------------------------------

Two little boys... Trapped in a world that doesn't care about little boys.  Where they are is NOT a good place.  Understand this.  They are not being schooled. They are in a survival of the fittest world. Sasha (Everett) is NOT FIT.  He's sick and needs a Mama to care for him.  Niko needs to run and play free without fear of the bigger boys who prey upon these little ones.

Please... please... someone SEE these boys.  They both have 3,000 + grants at Project Hopeful.  Join with me to pray that someone steps up to get these boys.  They both need out.  Renee and her husband are there.  You can follow their blog here.  Where thEse boys are currently living is NOT for the faint-hearted.  PLEASE... I am not prone to weep hysterically when I see pictures of RR babes but the desperation I feel for those two precious boys is beyond words.  I can say no more.  I am drowning in tears for these boys.  They need OUT.

Teddy Bear Thief

Hmm what do we have here? Looks like it might be a Teddy Bear thief.

Look at those stone cold eyes. Definitely a thief and a mean one. Absolutely no fear!

This Teddy Bear thief has also stolen the "blankie"!!! She is  ruthless! Poor Andrew!

Oh wait a minute, I think she's getting scared! Looks like she is trying to conceal her identity!

 No, she is mocking me!!  She laughs in the face of fear!

I don't think this thief will be returning the stolen goods anytime soon.

 What is she saying? "Yeah Andrew, I took your Bear and Blankie. so what are you going to do about it??"

You win this time Teddy Bear thief!  But I wouldn't mess with the bear again! 




 

Sweet Angelina! : Teamwork Tuesday

Well here is one beautiful little girl, waiting for her family. 

Miss Angelina

Girl, Born March 2008
Diagnosis: Down syndrome

This beautiful muffin, look how she has grown!   She does have a heart condition  and will need to seek a cardiologist and surgery once home.    She needs a family ASAP!

Additional photos available!  SINGLE MOMS and larger families welcome!

$4790.50 is available towards the cost of my adoption!