Saturday, October 31, 2009

Reece's Rainbow

View this montage created at One True Media
Reece's Rainbow

As the world all knows, I have a great love for people with Down Syndrome. I, somehow, knew deep down that I would have my own child with Down Syndrome. The world also knows that love I have found for Orphans with Down Syndrome.

Andrea, the Executive Director for Reeces Rainbow (and the founder) made this video. What Andrea has done for these orphans is just amazing, breathtaking, great!!!!!

This is a long video but worth all TWELVE MINUTES so take the time to watch! My princess, Lera is in it!! (wink! wink!) Just click on the Reeces Rainbow linkat the start of the post.

More to come tomorrow...

Thursday, October 22, 2009

90% Aborted

Whoa! I almost forgot to post today. Sick. As. A. Dog!!!! Yup, the residual of the swine flu is sitting and has embedded itself in my lungs. Cough, cough! Hack Hack! (Don't worry. Nothing a little Z-pack and Robitussin with Codeine can't cure!)

One of the facts related to Down Syndrome that has hit me the hardest (and was totally SHOCKED, actually!!) was this: "90% of babies diagnosed prenatally with having Down Syndrome are aborted"

Really? Seriously? Where do they get these numbers from anyway?

I just wanted to take this opportunity to brag. I had the pleasure one day of asking our local genetic's counselor if she truly believed the number to be this high. Her response? "Not even close. Unless the babies "other" issues were so severe that the mortality rate would have been high, they have carried the babies to term" She went on to say in the 10+ years (I really can't remember how many years she has been practicing) she has only seen a handful of abortions due to the diagnosis of Down Syndrome alone.

While I am excited about this number, I will not EVER stop educating my community on Down Sydrome.

Wednesday, October 21, 2009

Another Milestone for Molly!

I just about fell on the floor when I asked who wanted juice for breakfast and got this:

Molly is really growing up. I see a HUGE difference now that she goes to preschool. She wants to sit with her siblings at meal times now (as you can see, she is just a little too short for the table but her convertible highchair doesn't fit UNDER the table like I had hoped). She wants to do everything they do. I caught her independently sitting at the art table with markers and paper making a picture. She doesn't miss a beat.

She was my "baby" for so long. Now, she really is a BIG girl; all grown up.

When we first had Molly and was talking to the genetics's counselor, she reminded us that Molly will do everything that everyone else does, just at her own pace. I am here to tell you that there is a 100% truth to that. Trying not to sound like a broken record but sounding like a broken record, people with Down Syndrome are More Alike Than Different!

Tuesday, October 20, 2009

When Mama's Not Looking...

Someone put a quarter in Molly yesterday! Holy Cow! She kept climbing up on the coffee table and dancing and singing away. I must have said a 100 times, "No, no Molly. Get down".

Well, after a while I decided if you can't beat 'em, join 'em. I just had to get a quick clip of it because she was totally cracking me up. She has one heck of a personality!!

Children with Down Syndrome can and are just as mischievous and adventurous as their siblings.

Molly is living proof.

Monday, October 19, 2009

The Twin's Three Year Stats!

"Compared with normal standards for children without Down syndrome, growth rates of children with Down syndrome are reduced by 20% between ages 3 and 36 months, by 5 to 10% in childhood, and by 27% (girls) and 50% (boys) during adolescence."

Maggie and Molly just had their Three year physical. I was impressed with both of the girls as far as growth goes.


Weight: 33 pounds

Height: 38 1/2 inches

This puts her at the 70% on the typical growth chart.


Weight: 28.5 pounds (Whoo! Hoo! She was stuck at 25# for the longest time!)

Height: 33 inches.

This puts her at the 25% on the Down Syndrome chart. So she is little for one with Down Syndrome. For #$@% and giggles, I plotted her on the typical growth chart. Umm, she doesn't even come close for height and maybe at the 3% for weight.

When they were born, they weighed the same with Maggie being 1 inch taller. The growth gap is getting to be quite remarkable as they get older.

I also had to add this picture to show that Maggie even "looks" older than her twin sister!

It's no wonder Molly is still considered the baby of the family by all of us.

Sunday, October 18, 2009

Another reminder

For those of you that follow my blog, I apologize for a repeat post. I want to say that I have posted this saying before.

When I first had Molly, someone had posted this on my Yahoo/Down Syndrome group. It was so refreshing and exactly what I needed.
From time to time, I give this to families that I feel I would benefit from it. One of which was a family touched by Trisomy 13.
It's a reminder that God doesn't make mistakes.
"As a small group of political and church leaders look on,
Jesus lifts a mentally handicapped child out of her high chair, kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.
As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?
I could do it; but I will not.
I am the Lord and not a conjuror.
I gave this mite a gift I denied all of you -- eternal innocence.
To you she looks imperfect
But to me she is flawless,
Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.
She will never pervert or destroy the work of {my} hands.
She is necessary to you.
She will evoke the kindness that will keep you human.
Her infirmity will prompt you to gratitude for your own good fortune...More!
She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...
I have chosen you.
You have not chosen me.
This little one is my sign to you.
Treasure her!"

Saturday, October 17, 2009

Hands and feet--too cute!

Molly was an "easy" diagnosis at birth. How they determine if a baby has Down Syndrome is first based on the physical features. Molly has many of them.

"Some of the physical features seen in people with Down syndrome include differences in their hands and feet. Instead of two creases across their palms, people with Down syndrome frequently have a single crease, short stubby fingers and a fifth finger that curves inward (clinodactyly). They can have small feet with a larger than normal space between the big and second toes. "

All of which Molly has. Molly's feet are extremely small. She is only in a size FOUR shoe. (In comparison, her twin is wearing a size NINE!!) I literally cannot find winter boots for her that fit.

But I just love the stubby little fingers and toes and the huge gap between her big and second toes. It defines Molly. It is her own special features that none of her siblings have.

Friday, October 16, 2009

Life interuppted...

Yup, I fell of the wagon. I was suppose to blog about DS everyday. This is my time to shine! To show the world was a great thing we've got. While this is my "family" blog, it is also a "Down Syndrome Awareness" blog.

My camera broke--again!!!!!!!!! I have 101 pics of Molly (all of her typical "DS" features) that I would love to post but don't have a freakin' camera! Need to get that fixed. So, my blog has been interrupted due to the camera being down. I have tons of pictures but can only be accessed via Mike's I-pod, I guess so whatever.

Anyway, the sickies have hit our house hard!!

While I don't want get into a big debate about the Swine Flu/H1N1, I must say that I was really hoping more precautions would have been taken. People are walking around everywhere with this and it's hit my house--BIG TIME!!! Maggie and Gavin got it. Well, it's considered a "probable" case since they are no longer testing for it. A lot of school has been missed. A lot of work has been missed. This is huge as the company that I work for allows the employee to be out with the Swine Flu, it doesn't compensate for family members with it so my husband has now missed four shifts of work, decreasing his raise. It has REALLY interrupted our lives and our community. The amount of absentee's within our school district is about 30-40%. That sucks! This means a lot of extra work for the teachers, parents, and students.

But you know, "it's just the flu". Enough said.

One of the best and most obvious characteristic of a child with Down Syndrome is the tongue! I love the tongue! Molly's tongue has not affected her ability to talk or eat, like some. She sticks it out when she is concentrating or when she is really excited!! I love it! You tell her, "put your tongue away Molly" and she uses her pointer finger to put it away--what a good listener--lol!

Tuesday, October 6, 2009

This is what I am talking about!

Please, please, please take the time to view this! This is what I have been talking about. Babies, children, and adults with Down Syndrome ARE More Alike Than Different!

When I watched this, all I could do was smile. I am so proud of each and every person on this video. I had happy thoughts about Molly at 29, and some sweet man asking for her hand in marriage.

Sunday, October 4, 2009

Just Let Her Be Healthy

When I first saw Molly, I had already knew she had Down Syndrome so, at that exact moment, I did not feel the sadness or disappointment of that child that I didn't get that so many (probably most parents) feel when they first get the "surprise".

After all, I just delivered TWO babies and given a medication that knocked me out. My hemoglobin was in the tank. I felt like crap physically. So I really didn't have it in me to totally absorbed (mentally) what had just happened.

Then, I had to worry about her heart. I knew I had to get her heart checked out. Her Echo was unremarkable; structurally normal with the PDA a "sliver" open. OK.

Now, I have to learn to tandem feed the girls. (side note: Thank God, Molly knew how to eat! Bonus!) I had to coordinate pumping and nursing. Up for one hour, quick one and half hour nap and up again to start the process all over.

I had to bring the girls in every single day for biliruben/jaundice checks as they were on the bili beds for a week or so.

I had to take care of myself. Eat, drink, eat, drink.

There was no time for me to mourn. Really. Honestly.

I do remember when I was taking a bath on day 5 of their life, I broke down. For that 10 minutes. I cried. Because of the hormone's, the overwhelming life that was in front of me, Molly, Maggie, people in my home! But mostly because of her Newborn Metabolic Screen results

The pediatrician called me to tell me that one of the rare disorders came back positive for a protein disorder call 3MCC

This is the first time that I got scared. The first time that I really processed the whole Down Syndrome thing.

I knew, at that moment, that I wasn't afraid of having a child with Down Syndrome. I was afraid of her not being healthy. Sure, I was lucky enough to not have any heart defects but now we were facing having a child with some rare genetic disorder that causes caos in her poor little body.

We had Molly (and myself as I may have given it to her) re-tested. The test proved to be a "false positive". Thank GOD!!

That's all I wanted. For Miss Molly to be healthy!

Saturday, October 3, 2009

The 31 for 21 challange

This month is National Down Syndrome Awareness Month. My favorite topic! It truly is. I am participating in "31 for 21" challenge. It is used to promote Down Syndrome Awareness and it is our hope that we will reach someone/anyone that is new to the world of Down Syndrome and the community; that they see that we are "More Alike Than Different"

The goal is to do a blog entry everyday, all 31 days of October focused around, in someway, Down Syndrome aka Trisomy 21. Hence the name "31 for 21".

There are almost 100 blogs that are participating. I encourage you to go to Tricia's blog, "Unringing The Bell" and visit some of these blogs.

Throughout the month, I will touch on my personal stories, my advocacy stories, and how this has changed my life and everyone that knows and loves Molly. Enjoy!

If there is anything that you want to know more about, or a question, feel free to leave a comment and I will address it! It's what I love to do!!

Friday, October 2, 2009

Maggie's Dora Cupcakes!

As you remember, we were all about the
Dora Cupcakes.
Can you believe that Sam's Club had a Dora Cupcake Cake??!! I think this was my favorite part of the day!

Maggie was sooo excited to FINALLY get to see and eat her Dora Cupcakes. You know, the ones she waited weeks to enjoy!

Thursday, October 1, 2009

My First Observation

Today I went to observe Molly in here classroom. Mainly, to calm my nerves that yes, she is OK in her big classroom. And to see if she really had her very own paraprofessional.
Needless to say, I was pleasantly suprised!!
Molly does wonderful in a group setting. She was receptive to her surroundings, listened and followed directions on the first (and sometimes second but no more than that) time. She did amazing during speech. She was talking up a storm all day long. She said, "backpack" clear as day! They had her point to one of two pictures and she got them all right!
They do a LOT for/with her to boost her fine and gross motor skills (had her push a weighted cart, walking up uneven surface, spinning, scissors, coloring).
She does have her very own para. At times, helped her too much but I trust that she will back off once we get rolling.
She moves from activity to activity relatively quickly (she is only there for 2 1/2 hours). She is constantly on the move. No down time, really. By the end of the day, she is pooped out. She fell asleep in the car on the way home.
All in all, it was great experience. I am glad that she is getting what she needs. To be honest, this beats the Birth to Three program right out of the water.