World Down Syndrome Day

Today is World Down syndrome Day (3-21, get it?).

And today I'm celebrating my Sweet Pea.

World Down Syndrome Day is the perfect time to raise awareness for people with Down syndrome. 

Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation (Sweet Pea has translocation) accounts for about 4% and mosaicism accounts for about 1%. 

Down syndrome is the most commonly occurring chromosomal condition. 

One in every 691 babies in the United States is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.

Down syndrome occurs in people of all races and economic levels.

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. Sweet Pea had open heart surgery when she was 5 months old. 

A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

For more information, please visit the National Down Syndrome Society.

Almost Walking

It's been a long journey, but I'm starting to see the light at the end of the tunnel.

When Sweet Pea was born, we knew she wouldn't hit milestones on the same timeline as her brothers and sister.  But still...

Almost 3 and she's only now taking an interest in pulling herself up and standing.  And then the other day she did this: 

Of course the first time I didn't have the camera ready and didn't catch that she pulled herself up and did it by herself.  So the second time, so I could have proof, I had to *encourage* her =)

Thankful Thursday: Happy Birthday Sweet Pea!

Two years ago, the cutest, most precious baby entered out lives.

The first few months were filled with heartache and uncertainty.  Even after having three kids, we were in unknown territory.  Two days after she was born, we found out she would need open heart surgery.  It was confirmed that she has Down syndrome.  

But, it doesn't matter.  She is ours and we love her unconditionally.

Yesterday we celebrated.

Two years of giggles, smiles, stubbornness and squishy hugs.  While we're still waiting for her to decide to stand and walk, she has found her own way of getting around (Please turn off the sound, there was a political discussion going on in the background ;) ).

When trying to figure out what kind of cake to make for her, I came across this idea: 

Ice Cream Cone Cakes

The instructions looked easy enough.  But...

Oops.

But to be fair, they didn't all turn out like that =)  And the kids had fun decorating the *fails.*

See.  I just had to make sure I didn't fill them too full and there were no cracks in the cones =)

Today I'm thankful for squishy baby hugs and the chance to be Sweet Pea's mama.  

What are you thankful for today?

{31 for 21} Wordless Wednesday

{31 for 21} In Mama's Arms

After Sweet Pea was born, I had a lot of things to process- we didn't know about her diagnosis until after she was born.  On top of everything that comes with a newborn- the lack of sleep, the wildly fluctuating hormones, I had to try to figure out how to nurse a special needs baby.

Things started off okay.  She seemed to get the hang of it.  But she was so sleepy.  And so hard to keep awake.  On top of that, her pediatrician was concerned about her weight gain.  I was pressured into feeling like I had to switch Sweet Pea to a bottle to "make sure" I knew exactly how much she was eating everyday.  

Feeling defeated, I made the promise that she would still receive only breastmilk.  For two long months, I exclusively pumped.  It broke my heart, but I knew it was what she needed.  For two months, I felt the cloud of failure hanging over me.

But then the sun started breaking through.  On her 2 month birthday, we were out running errands and she got hungry.  Still not being use to carrying bottles with me, I had forgotten to bring her bag with.  Having no other choice, I sat down to nurse her.  And she latched on and nursed!

She still wasn't easy to wake, so I continued to pump and bottle feed at night.  But during the day, she wanted me!  

We still struggled.  But I had some amazing mamas who continued to encourage me and to lift me up in prayer.  They would send notes of encouragement or links to resources when I most needed them.  They helped remind me why I was doing this, why I was working to get her to do what her pediatrician said she couldn't do.

By her 3 month check up, she was no longer taking a bottle.  She was gaining weight, her checks were getting chubby.  Her heart still looked good- there was no signs of heart failure.  She wasn't over exerting herself trying to nurse.  She was thriving =)

So we celebrated by having nursing pictures taken.

We had overcome the first big hurdle in our nursing relationship.  But another one was looming on the horizon.  At 5 months, Sweet Pea went in for open heart surgery.

Two days after her surgery, I was given the go ahead to start nursing again.  I was so happy to be able to hold her again!

With the help of some wonderful nurses, I was able to maneuver myself around all her wires and get her settled in my lap.  The first couple sessions, she didn't nurse much (she was still hooked up to IV's at that point), but she did make the effort.  More than anything, it was important to get her back in my arms and to help her remember what she needed to do. 

With the support of the hospital staff, I was able to stay in her room to be there whenever she needed/ wanted to nurse.  The hospital even provided meals for me while I was there.  When she wasn't nursing, they had a pump for me to use and a place to store everything.

Once she came home things continued to go well.  Her incision healed perfectly, the cardiologist was very pleased with the repair and her therapy team was happy to be working with her again.  She continued to grow stronger everyday.

As she gets older, we're struggling through the normal toddler nursing issues - lack of an attention span, more interest in food...  But we're still nursing.  And so, once again we're celebrating with nursing pictures.

Almost 17 months old, nursing for 15 months and showing no signs of wanting to stop =)

For the mama who is just starting her journey of nursing a special needs baby, don't give up.  Find someone who will support you and encourage you when it looks the bleakest.  Follow your mama's heart.

{31 for 21} Down Syndrome Awareness

It's October.  The year is flying by.  But I wanted to take time to share something dear to me.  

All over you're going to be seeing things about the campaign to go pink, to support breast cancer.  But that's not the only issue to be aware of this month.  Don't get me wrong, there isn't anything wrong with being aware of breast cancer and helping to find a cure, it just isn't as important to me.

This is.

My Sweet Pea.

Why is she more important this month?  Because of this.

My Sweet Pea was born with a little something extra and this is the month to celebrate that and to let others know that a diagnosis of Down syndrome doesn't mean your baby isn't perfect.  It just means that you will have to change YOUR ideas of what perfect means and learn to LOVE in a way you didn't think was possible.

I Don't Like It, Sam I Am...

Sweet Pea had her therapy session the other day.  She tries so hard.

But there's usually a lot of crying and fussing...

But it's all an act.  

Sweet Pea can do a lot more than she lets Ms Michelle know.  

She was working on getting her to release objects into a container.  The tears flowed.  And as soon as Ms Michelle left Sweet Pea was putting the balls in her hippo and dumping them out.

Sigh...  She's such a little stinker.

World Down Syndrome Day

Today is World Down Syndrome Day.  Last year this day wasn't even a blip on my radar.  Sure, I have friends who have loved ones with Down syndrome, but it wasn't something that affected me personally.  Not until May 8, 2011.  Then my whole world was turned upside down =)

There is a poem that many parents of children with Down syndrome have read.  It's called Welcome to Holland. It talks about how planning for your baby is like planning a trip to Italy, but that you suddenly find yourself in Holland instead- completely unprepared for the change, but that you eventually learn to love the culture and everything Holland has to offer.  

I want to offer a little different take on it =)  My view is a bit different, probably because Sweet Pea was our 4th and not our 1st.

Planning for another baby is a bit like planning a trip to the in- laws house.  You're pretty familiar with the way there and with the house.  You feel comfortable there.  And you're surrounded by people who love you.  So you start out on your journey to spend a few days with your in- laws...  Only a few days, because just like having a baby, your schedule is interrupted for a little while, but then you return home and return to what you were use to.

Except when you hear that your new baby has Down syndrome.  Suddenly, instead of heading north to visit the in- laws, you suddenly find yourself with orders to move across the country.  Within a couple weeks, you've packed up everything you own, sold your house and moved into a new house having never stepped foot in it before.  You feel lost, not knowing anyone.  You feel like you're floundering around trying to find something, anything, that will make this new place seem like home.  You're a thousand miles away from everyone you know and love, from any support system that you had in place...

But then something amazing happens.  You start to meet people.  You start building relationships with people.  You get all the boxes unpacked.  You're surrounded by all the familiar pictures, furniture, toys.  Sure, things are in different places, furniture has different uses now, but it's familiar.  You look around and see the smiling faces of your family and realize it doesn't matter where you live as long as you're surrounded by family.

And so it goes with finding out your baby has Down syndrome.  You feel completely throw for a loop and like your life will never be the same.  The bumps in the road are be a bit harder (who wants to see their baby go in for open heart surgery at 5 months?), but the rewards are so much bigger.  You find yourself celebrating things you took for granted with your other children (like pooping on a regular schedule!).  Milestones being reached are so much sweeter because you realize how much more work went into it.

And while you know you're not going to return to your first house, you know that things will still be the same.  Trips to the in- laws will still happen, they'll just take a bit longer.  Friends will still be there.  And most importantly, family will still be there.  And someday, you'll come to realize that this is home and you wouldn't change it for anything =)

And what could be cuter than this face?

This is what I posted on my facebook page this morning.  It sums it up about perfectly.

Today is World Down syndrome day. And today I'm celebrating the surprise we received with the birth of Sweet Pea. The road hasn't been easy the last 10 (almost 11!) months, but I know I wouldn't change her for anything =) She's taught me more about unconditional love than I thought possible. She's brought joy to our lives that we couldn't have imagined. She's changed hearts that we thought were unchangeable. Amazing how God works when we get out of the way, isn't it? 

Another month already?

How did another month sneak up on us?  Sweet Pea can't possibly be 9 months old already, can she?

In the last month, she's started doing this:

Oh wait, that's not it...

That's better =)

Now we just need to work on her getting her arms underneath her so she can build up some arm strength.

She's decided she likes prunes.

And of course, she's started doing this.

But most important, at her cardiologist appointment today, the doctor decided that her heart looks about as perfect as it can get and doesn't want to see her again until she's 2.  Can y'all see me doing a happy dance right about now?

Too long...

I've been gone too long from posting =)  To make up for it, I'm posting a bunch of pictures.

My mums are blooming...  End of November and they're absolutely gorgeous.

Look mom!  I can reach the toys!

Wonder if I can get them with my foot?

Nothing makes me want to crawl back into bed then a chance to snuggle with some of my favorite people =)

Yup, definitely tempting to crawl back into bed and snuggle...

We're having family photos taken tomorrow (by the talented Mae Burke).  Can't wait to see them =)

Here's a sneak peak of what we're wearing.

She was sleeping, and had now idea I was taking pictures =)

6 Months

Six months already.  Six months and you've already been through more than most people ever go through.

Post- op appointment with the cardiologist yesterday.  He said everything looks great.  There is still some leaking around the valves, but it's less than what is normally seen in kids who've had an AV canal repair.  He also said we can take Sweet Pea off of all her medication.  Yeah!  Because she *loves* taking her medicine ;)

{31 for 21} Day 31: What I've Learned

I thought I would close out my month of blogging for Down syndrome Awareness by listing 21 things I've learned.

1) Sweet Pea can be as stubborn or as sweet as her brothers and sister.

2) Her brothers and sister think she's the cutest thing alive.

3)  She has an amazing ability to wrap grandmas and grandpas around her little finger.

4)  She uses her cuteness to her advantage (see numbers 2 and 3)

5)  Sweet Pea knows how to rock a big bow

6)  She'll face many challenges in her life- just like my other kids will.

7)  A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

8)  No one can predict what Sweet Pea's abilities will be by looking at her.

9)  Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

10)  There is a wonderful community of families out there who love someone with designer genes.  And I'm privileged to be a part of that community now.

11)  There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.

12)  Sweet Pea is more like her brothers and sister than she is different.

13)  Life goes on as normal- well, as normal as it can be with four kids.

14)  Children's Hospital of Boston released findings from recent surveys.  The results indicated the following things:

  - 79% of parents surveyed said that their outlook on life is more positive because of their child with

    Down syndrome.

  - 97% of siblings over 12 said that they felt pride about their sibling with Down syndrome.

  - 88% believed that they were better people because of their sibling with Down syndrome. 

  - 99% of adults with Down syndrome surveyed said that they were happy with their lives.

  - 97% of adults said they were happy with their lives.

  - 96% of adults were happy with their looks.

15)  Sweet Pea can be very demanding when her food isn't there when she wants it.

16)  My life will be different now, but it would have been different if Sweet Pea had been born with the normal number of chromosomes too.

17)  Down syndrome is a beautiful variation of what life can look like.

18)  Sweet Pea isn't afflicted or suffering.

19)  Sweet Pea has the most amazing eyes.

20)  I am the best advocate and champion my kids (Junior, Girly- girl, Squish Bear and Sweet Pea) will have.  

21)  I am thankfully for the unexpected turn my life has taken.

So there you have it.  Twenty- one things I've learned in the last almost 6 months.  I probably won't continue blogging everyday (although Grandma would love to see pictures everyday), but I will try to post once or twice a week...  Maybe...  If I'm not too busy keeping up with four kids =)

{31 for 21} Day 30: Cousins

Another guest post today.  My youngest niece came down from MN for a visit and to meet her newest cousin for the first time.

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It was so cool to meet my cousin for the first time. I have to say one thing she is so cute! I love how she looks at you and smiles. She is really quiet for a baby I would say. She is just like a regular baby but cuter. She loves to talk a lot. So happy to come down and meet her!

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One more day and then I can go back to my once or twice a month posts =)

{31 for 21} Day 29: A Different Perspective

As the day quickly comes to an end, I realize I don't have a very creative post for today.  Busy day hanging out with family and I'm ready to head to bed =)  But...

I had the privilege to read this blog the other day and it really got me thinking.  There are many things I want everyone to know about Down syndrome, and at the same time, there are many things I want people to know about me.  

Muchier Muchness is much more eloquent than I am, so head over and read her take on what it takes to be a special needs mom =)

And the required shot of cuteness.

{31 for 21} Day 27: One Thing

Today is the last common topic of the month - "What I Wish People Would Understand About Down Syndrome".  The goal is to express the one most important thing that I want people understand about Down Syndrome. 

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I'm not entirely sure where to go with this topic.  There are so many things I want people to understand, but I think what it really boils down to is that I want them to *get* is that Sweet Pea is a baby just like any other.

I want them to *get* that she has as much potential as her brothers and sister.


I ran across this post while I was trying to Occupy Children's Med City and thought it spoke volumes to what I want people to get.


I hope they don't mind me re-posting it here:

Einstein Syndrome

by Miriam Kauk

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”

The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.

Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.

Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.

This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.

Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.

Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”

As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.

With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.

I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.

This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.

As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.

I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.

This article was first published in the Teaching Home magazine in July/Aug 1994.
Copyright 1994-2011 Miriam Kauk

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I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.


I would like to add that most parents of children with Down syndrome want the best for them and with more access to therapies, this generation of children will achieve more than any other generation.  Now, it isn't the low expectations of the parents that hold them back, its the low expectations of society.


I wrote a post the other day about seeing my child through God's eyes.  My heart was heavy that day because I had run into someone who didn't believe that Sweet Pea could achieve as much as her brothers and sister.  A person who believed that it wouldn't be worthwhile to invest in her future.  


So, to that one person, and any others who want to believe she isn't worthwhile, I challenge to view her and other children like her through God's eyes.  Because God doesn't make any mistakes.  Sweet Pea's life has a purpose and a future.

{31 for 21} Day 26: Wordless Wednesday

{31 for 21} Day 25: Through My Eyes

You see a diagnosis

I see a miracle baby

 

You see stereotypes

I see an individual

 

You see limitations

I see possibilities

 

You see challenges

I see opportunities

 

You see a burden

I see a blessing

 

 

You see her through the world's eyes

I see her through God's eyes

{31 for 21} Day 24: Lil Miss Sassy Pants

Everyone told us we would notice a difference in her after her surgery.  I just wasn't expecting it this soon =)

" All right Coconut.  You distract her while I make a break for it."

I'm really going to miss my sweet, snugly baby.  But I look forward to getting to know this new sassy one.

{31 for 21} Day 22: Progress

Two days post- op

Sweet Pea is making progress.  Her chest tube and pacer wires came out this morning.  The nurses are optimistic that the atrial line will be out today as well.  I'm glad the tubes and wires are slowly disappearing.  Nursing has been a bit of a challenge- trying to get her situated without getting tangled up =)  But we're making it work.

The other kiddos came up for a visit yesterday, and I, of course, forgot to get a picture of them with their sister.  I am very grateful for the staff here at the hospital.  Before the kids went in, they brought out a doll that had all the same wires and stickers on it that Sweet Pea had.  The Child Life specialist went through each one and explained why each one was important.  All three were excited to see here and can't wait for her too get home (and neither can we ;))

The other kids have been completely spoiled by grandma and papa.  My dad has been doing lots of projects with the kids- yesterday it was soap carvings.  There's been campfires and s'mores and trips to the "man" store.  I'm very thankful that they're both retired and can come down and spend this time with the kids.  It's been a huge weight off my shoulders knowing the other kids are well taken care of =)