Saturday, August 29, 2009

Only Three Days Left

So far it is looking like babies with extras like to come early... but the only way we will know for sure is if you cast your vote in the poll. Its over there <-- in the left column, five blocks down. There are only three days left, so hurry up and put in your two cents.

Wednesday, August 26, 2009

It’s Rocking Around Here

Ok, I swear to you... I am not a slacker. Its just that there are babies, babies everywhere! And with new babies come new blogs...

New Blog and New Baby
Cole has been hanging out with us for a bit and has just launched her new blog, The Tao of Tulips. Go check out her beautiful Abigail (aka The Quail). This baby girl has the cutest smile. It makes you want to plant a big smoocheroo right on her.

New Baby
These guys post some funny pictures, seriously, laugh out loud funny. Go check them out at Teeny Tiny Hopkins and meet Lucy Mouse, I mean Lucy Kate. This baby girl is a real fighter. She has grown big and strong since her tiny start and has just aced heart surgery.

New Baby and New Blog
Let’s hear it for the cutest boy in Iceland. Krist√≥fer, I am in awe of your swimming skills little man! Dig out your passports and head over to Reykjavik, Iceland to welcome Thelma and Kristinn to parenthood and the blog-o-sphere.

New Blog and New Baby
Lara and Michael welcome baby number four. This is one busy mama, but thankfully she found the time to start a blog, Parker's Purpose, so we get to enjoy her lovely family too.

New Baby and New Blog

Logan Christopher is one tough baby boy. He’s just under three months old and has already sailed through heart surgery. But it isn’t OHS that knocked my socks off, no... it was the picture of him holding his own bottle while still in recovery.

New Blog, Baby on the Way
Oh how exciting... Henry’s still in utero ;-) But you can check him out now because mom, Kara, has awesome 3d ultrasound pictures posted of him. By the way, they are still searching for the perfect middle name, so if you have any ideas make sure you head over to Three Little Kings and tell her.

If you would like our community to know about the arrival of a new baby with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Wednesday, August 19, 2009

That Rowdy Tongue

The rumors are true... some of our children are well-endowed with super-dee-duper tongues that come in quite handy for long distance frosting frolicking. The tongue, being a muscle, is susceptible to hypotonia and thus may be a bit difficult for your baby to keep under control.

Don’t stress about it because there are lots of things you can do to teach your little one how to manage her tongue. In the early years you will need to do the work of training this muscle for her. The payoff is greater oral motor control which means an easier time eating and speaking, as well as keeping her mouth closed when in a resting state.

The best exercise you can do is called tongue-walking. Every time your baby’s tongue is hanging out you can walk it back in by using your finger (keep gloves or antibacterial hand sanitizer on hand) to gently tap tap tap from the end of it up the center of it until you have reached the middle portion of it. Your baby’s tongue will instinctively retract and tighten in response to your touch. Do this exercise a few times in a row several times a day and anytime you spot her tongue being lax.

Other exercises include various versions of “kissing”. Put your face up close to your baby’s face and make a rounded kiss shape with your lips. Then make the kissy sound. Your baby will try to imitate you thus pulling in her tongue and strengthening her lips and cheeks. You can also do this using the “m” sound positioning of your lips. Make the sound “ma ma ma” and then put your mouth in the closed “m” position right on your baby’s mouth and hum the “m” sound so she can feel the vibrations on her lips. This also encourages her to imitate you and helps her to feel what that closed mouth “m” sound is like.

When your baby is ready to move on from the nursing or bottle stage, you can offer a cup that has a straw. Mr Juice bear or the NUK straw cup (available online at and in-store at Walmart, respectively) are great options. Teaching your baby to drink from a straw rather than a sippy cup will stimulate good lip closure and keep her tongue in. (Sippy cups allow her tongue to slide out under the spout enabling bad habits.)

As your child gets older you will be able to add gentle touch mouth cueing to get her to pull her tongue in and close her mouth. There may always be times when she is tired, excited, or concentrating hard that her tongue will try to make an escape but by working with her from a young age you will minimize this and help her to gain control over that rowdy tongue.

Sunday, August 16, 2009

Does She Really Look Like Me?

Dan, aka Captain Dan and OS Alpha, over at Down with Oz, Oz Squad, and DOWNTOWN has passed the Golden Advocate Award along to me. I am honored that he said such nice things about my blog (and managed to stick to just the positives ;-) Dan is a great writer, father, and advocate, and I am proud to be on his team (which you should join if you haven’t already.)

Not only was Dan kind enough to bestow an award on me, but he also customized it to personally represent me. Does she really look like me? Well, believe it or not, I am not actually that cute, lol. Thanks Dan, you’re the best!

I have to tell you, there are a lot of amazing blogs out there, like Living In Invisible Cities (one of our fancy friends) and Take a Walk on the Happy Side (home of my favorite identical twins). There are also some fantastic disability champions out there like The Accidental Advocate and Welcome to Illinois. So it was hard, really hard to decide what to do with this award.

After ruminating about it for a week or so, I've decided I am giving it to Lisa of Bridget’s Light. Lisa is a gifted writer with a creative streak and a powerful voice for our children. Go spend some time reading around her blog and you will agree. I am thankful that this mother of five makes the time to share her beautiful daughter Bridget as well as her valuable contributions to the ongoing public conversation about disability.

Visit Rejenerations, the home of the Golden Advocate Award, to grab the real version of it... the one without my goofy face on it. There you will also find the specifics about accepting this award and passing it along.

Thursday, August 13, 2009

Kaitlyn Has Arrived

As promised, beautiful Kaitlyn was born on August 4th. She has broken the boy streak we had going. Jenee has newborn pictures posted, so go over and see the little princess.

Thank you Rebecca for the lovely announcement graphic. If you would like our community to know about the arrival of a new baby with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Thursday, August 6, 2009

Good Intentions - Planning for the Future - Part 1

There are several parts of planning for your child’s future that I will be covering over the next couple months, ranging from writing your will to buying life insurance. I am going to start with the Letter of Intent because it is free and you can get it done with no professional help.

A letter of intent is a document written for future caregivers that describes your child and the life vision you have for him or her. (Older and adult children can and should help with the life vision but I am writing for the 0-24 month crowd, so you’ll be doing all the planning for now.)

What does this mean? Well, imagine that tomorrow someone else had to step into your shoes and take care of your baby. What routines should they know about, food allergies, preferences, dislikes? What is your bedtime routine? Does your baby love the bath? Is your child on medication? It is important to document these things.

And what about the future you envision? Should your teenager have an allowance? What type of discipline do you want to employ? Do you want to restrict your child from watching rated R movies? Do you want your child raised in a particular faith? Do you want your child to have a particular diet?

After researching several sources on the letter of intent, I have put together a template letter that you can use as the base for your child’s letter of intent. Download the .pdf file and use it as a guide, or email me for a text version of the file that will enable you to type into the document.

Keep in mind when you are writing the letter that you will be updating it every six months or so to keep it current. You’ll need to keep a completed copy of the letter with your important papers, as well as a working copy on your desk or computer.

It is hard to think about what life would be like for our children without us. However, if we don’t go through this exercise, we risk our children not benefitting from all the loving care we have planned for them in our hearts.

Your Turn
Is there something I forgot to put in the letter? Have you already written your letter of intent?

Sunday, August 2, 2009

Prenatal Diagnosis of Down Syndrome?

What Other Mothers Say
Congratulations! You are blessed! --Jill

...everytime I think of the what ifs I also think what I would be missing if she didn't have DS. You know Holland is absolutely breathtaking. =) --Laiken’s Mother

There may be struggles but you will never find regrets. The love you will have for this child will take your breath away. I never would have believed it myself. --Stephanie

But this sweet little baby has often brought so much peace to my heart that I never expected. As sweet as my other babies were, that is one thing I never remember feeling with them. That's why she is special to me and not because she has DS. --Chris

Our son with Ds is adopted and needs open heart surgery soon. No one said it would be easy, but I feel honored to be his mother. --Kristin

She shows me everyday what it means to not give up if you don't succeed the first time around. She has taught me patience and courage and to be proud of who I am and to enjoy the little things in life. -- Tasha

... this is just a baby- and you need to hold onto that no matter what other people say or feel. -- Nicole

This little life is not what you were expecting but everything will be alright. In fact, everything will be great! -- Sally

They are going to learn so much from this child. They are the lucky ones!! -- Amy

Give this child life and you will learn more about yourself than you ever dreamed there was to know. --Jen

More importantly, he will be a delight and will bless your life in so many ways. He will thoroughly charm everyone around him and I promise that you will be smitten when you first hold him in your arms. -- Tara

I know that I never could have had such a life change without my sweet boy. --Angela

You are meant for your baby. Your baby is meant for you. -- Ria

Read more of what moms say on this topic here and here.

Posts Written for Pregnant Parents
Chrystal: What Would You Say
Lisa: Open Letter to Parents Facing a Diagnosis of Down Syndrome
S: My advice for a new Down Syndrome family
Karyn: To Those With A Prenatal Diagnosis

And the Winner Is...

Stephanie of Our Daily Smiles. Email me to let me know which prize pack you are selecting.

Thank you to everybody that entered the giveaway. Your words matter and I am glad you shared them.

Picture Credits
From left to right, top to bottom:

Emilia of Our Daily Smiles
Finnian of Finnian’s Journey
Lily of A Walk In Lily’s Garden
Jacob of Our Jacob
Joey of Our Bundle of Joy
Leah of Everyday Elliott photographed by Melissa Jones Photography
A baby I can't wait to meet
Quinn of Quinn’s Crusaders
Ella Grace of Ella Grace with the Pretty Face
Charlie of Blessings and Glory
Playette of One More, More Than One
Max of Hang On Little Tomato

Saturday, August 1, 2009

Brand New Blog

Check out Sara's new blog, Extra Smiles... Extra Giggles... Extra Love... Here you're going to have the fun of meeting Lilly and her little brother Max, who has just about the prettiest blue eyes I have ever seen. (Click on pictures from her 7/27 post to enlarge them and you'll see what I mean.) Give Sara a warm welcome to the blog-o-sphere so she'll be encouraged to keep those cute pictures coming.