Friday, December 18, 2009

Somewhere in Kazakhstan...


jasmina
There is a little girl named Jasmina who is waiting to be adopted. She is a beautiful child who has Down syndrome, and she is the only child with Ds available for adoption through Reece’s Rainbow in Kazakhstan. More than anything I would like to be able to give this child her forever family for Christmas. But I am not God or Santa and I cannot grant her wish with just my will.

I can donate to her adoption grant and I can ask all of you to consider this gift as well. If you have anything left in your charity budget this year, please give to Reece’s Rainbow on behalf of Jasmina or any of the angels that are hoping to be saved from life in an institution.

Reece’s Rainbow accepts PayPal but prefers checks to save on processing fees. If you are going to send Jasmina a Christmas gift for her fund, please make the check out to Reece’s Rainbow and put Jasmina’s name in the memo. Mail the check to: Reece’s Rainbow, PO Box 4024, Gaithersburg, MD 20885. Thank you.

May you and yours be blessed during this wonderful holiday season.

Tuesday, December 8, 2009

That’s What I Like About You

Back in October I posted “The Best Part,” a few thoughts about the good stuff that comes with Down syndrome. I asked you to tell me your favorite things and what a great response you gave. It was a wonderful reminder that people with Ds are unique and fabulous in so many ways.

Things We Love
People with Ds live in the moment... they have determination and pride. And we have pride for them as we celebrate their milestones. We have the pleasure of never-ending hugs & kisses... wherever at whatever age. People with Ds express uninhibited love & joy. They have a lovely innocence about them...

“I love the innocence. The fact that my son doesn't see jealousy or envy in others, doesn't fuss when someone takes one of his toys, doesn't try to take others things - he just accepts everyone and everything at face value. I love that.”(Karen)

As parents and loved ones, we have become part of a wonderful community, we have learned through self-introspection the value of life, and have developed a great appreciation for the little things. We have learned to slow down and enjoy what is, and we have experienced personal growth... becoming advocates and cultivating an acute empathy for others...

“Having a child who is 'different' forced me to break down stereotypes and prejudices that I never knew I had. It makes me want to defend and advocate all of those in our society who are vulnerable and overlooked.” (Stephanie)

People with Ds have extraordinary physical characteristics... a chunky kissable neck, amazingly talented toes, stunningly beautiful brushfield spots in their eyes, and delicate facial features. They are sincere, caring, and non-judgemental of others. They are charitable, kind, and altruistic...

“My Favorite thing about DS is that having Ricki taught me to accept and love the positive things in everyone, and to avoid dwelling on the negative. I then applied this to my (then) teens. It was beneficial for all of us.” (Ricki’s mom)

Many babies with Ds give us the opportunity to enjoy an extended infancy, and a baby who sleeps through the night. They reward us daily with a pure, abundant, and uncomplicated love. They are easygoing...

“I love how cuddly Miss B is and how easy she is to console. When she is crying, pretty much all you have to do is pick her up and snuggle her in, and she's happy again. We've had very few of those “Is it your diaper? Are you hungry? Are you hurt? Are you sick? Is it gas? Are you hot? Are you cold? Why are you crying and why won't you stop??!!!??” moments with Miss Banana. Gotta love that too!” (Carrie)

People with Ds have the most beautiful genuine smiles that they give freely to all...and the cutest protest pouts you ever did see...

“I love Maddie's smile...she smiles with her whole body...her hugs are big, warm, and so calming...and I love how when she does not like something she lets us know with the greatest wrinkled/scrunched face...she is priceless!”(Chromosomally Enhanced)

I’ve already said that my favorite part of Ds so far is the extension of the trip through babyland but I want to also mention how much I love it that my daughter plays with her toys... really plays with them. With my typical kids, buying toys (other than Legos) was a waste of money... there was zero interest in toys geared for babies. With Summer I have the pleasure of watching her gradually figure out how each toy works and then actually playing with it over and over. toesShe has taught me that life is not about the race to success... that instead it is the joy and peace of this moment, the only moment of our lives that is guaranteed.

Oh yeah, and the toes... did I mention the toes?


Your Turn
You guys wrote some awesome posts on this subject, and if anyone else is inspired to do so, please send me your link so that I can add it to the list.

Zip - Perdue - Dee - Dah
Mutterings & Musings
The Tao Of Tulips
Livin for the Love
SaySay’s Reality
Bradi & Madi’s Blog
Life as We Know It

Guess Who Is Getting the Goodie Box
fallwinnerRandom.org picked Brandie and Goldie from Livin for the Love. Congratulations! Email me and I will get your package out right away :-)

Monday, November 30, 2009

Dear Santa Claus,

Once your baby can sit or has better body and head control, you can introduce stage two toys. (Not here yet? Check out the stage one toy recommendations. Or if you have already moved on to the next stage, check out these toys.) I’m going to list 10 toys you might want to put on your baby’s Christmas... Hanukkah, Kwanzaa, Three Kings Day... list. Though this post comes too late for Eid-el-Fitr (and Black Friday), you will hopefully still get some good ideas from it.

Fisher Price—Roll-a-Rounds Swirlin Surprise Gumballs
sheridan_gumball
Lights! Action! Wow! This oversized “gumball” machine releases four see-through balls that have “candies” in them. Each time your baby taps the lever, he is rewarded with lights, music, and a gumball that swirls around as it makes its way out of the dispenser. This toy teaches cause and effect, as well as the concept of in/out. The lights and sounds can be turned off and the volume has two settings. Comes with 3 AA batteries (but the ball dispensing would still work with no batteries). $22.99 Toys-R-Us
Picture credit: Sheridan from Genetically Enhanced

Fisher Price—Little Superstar Sing-Along Stage
music table
This toy gets an A+ for entertainment value as it will keep your baby interested for long periods of time. It also gets high marks for teaching cause and effect, encouraging self-recognition and communication, and promoting sitting, reaching, and fine motor hand control. For an in-depth description of this toy, check out Ria’s review. (3 AA batteries included) Overpriced ($83) at Amazon.com. Look for it in-store at Toys-R-Us.

Slinky
slinky2
slinky1Who knew a slinky could be so much fun? Put your baby’s amazing feet to work with this toy and then sit back and enjoy the show. The plastic version comes in two sizes, several bright neon colors, and is easy to untangle. This toy encourages your baby to practice gross and fine motor skills, but even if it didn’t have any therapeutic or educational value, I’d still recommend it because it is the most fun your baby can have for five dollars :-) Small plastic version, $4.99 Toys-R-Us

Fisher Price—Rainforest Jumperoo
jumperoo
DSC01400Many babies with Down syndrome love to bounce and the Jumperoo provides the perfect opportunity for it. Once your baby has good core strength, he’ll enjoy pushing off with his feet and bouncing himself like crazy. The jumper has lights and sounds with various settings, but your baby might be too busy jumping to notice!. Babies up to 25 lbs. and 32 in. can enjoy this toy. (3 AA batteries not included) $69 at Amazon.com
Picture credit: Joey from Our Bundle of Joey

Fisher Price—Sesame Street Singing Pop-Up Pals
popuppals
This pop up toy features Sesame Street figures who sing clips of their songs when they pop out. The toy teaches cause and effect and prompts your baby to practice his fine motor skills to twist, press, click, and slide the knobs. The characters’ doors close in two different ways adding to your baby’s coordination skills. The sound can be turned off and the pop ups still work (nice feature for when you run out of the 3 AA batteries that come in it). $21.99 at Toys-R-Us

Fisher Price—Moo Sounds Milk & Cookies
moocow
Who stole the cookies from the cookie jar? Your baby will! This little jug comes with 5 cookie-shaped colored discs that your baby can put in and take out. For beginners the jug opens up completely and for those who have practiced a bit, the cover fits on with just a cookie-sized slot in it. When you dump the cookies out, the jug “moos”. This is a great way to work on the concept of in/ out, colors recognition, and beginning counting, while also working on the coordination skills of targeted placing and reaching for objects. (2 Alkaline Button Cell batteries included) $9.99 at Target

Melissa & Doug Nesting Boxes
nestingboxes
What’s more fun than building a tall tower? Knocking it down of course! Your baby will likely master the destruction part of this game before the building part. That’s ok because she has you to stack and restack the boxes for her :-) Eventually she will learn to stack the boxes and to nest them by herself. You can work on the concepts of up/down and in/out with this toy, as well as practicing the motor skills necessary to build and knock down the boxes. These nesting boxes have the alphabet on them and lots of pictures that you can use to teach some common words to your baby. Melissa & Doug Deluxe 10-Piece Alphabet Nesting and Stacking Blocks are $9.99 at Amazon

Fisher Price—Stack 'n Surprise Blocks Songs 'n Smiles Sillytown
blocks
sillytownPop up, peek-a-boo, stacking, music, lights, and a race car... there is much to do with this toy. Your baby will practice fine motor skills, hand-eye coordination, and cause and effect. This set comes with 8 stacking blocks (one that is a car) and features a pop up section and a tumble down section, as well as a car ramp, and a stacking shelf. After seeing how much fun Summer (and her 3 yo brother :-) had with the Count and Build Snail Pail set, I knew this one would have a spot under the tree this year! (3 C batteries included) Songs ‘n Smiles Sillytown is about $40 at Walmart and the Count and Build Snail Pail is $19.97 at Amazon.com

Munchkin Mozart Music Cube
cube
Music therapy here we come :-) This cube features 5 individual instrument buttons: harp, flute, French horn, piano and violin, and an orchestra button that plays all the instruments at once. It has 8 Mozart compositions and the lights flash in rhythm will the songs. The buttons are big and easy to push with hands or feet. The toy teaches cause and effect as well as the different sounds instruments make. (3 AA batteries not included.) $15 at Amazon.com

Discovery Toys—Go Go Caterpillar
gogocat
Our PT brought this toy over one day and Summer was very interested in playing with it, though for a while she seemed a little mad that it “ran away” :-). If you are ready to urge your baby to crawl or scoot, this is a good toy to have. Your baby can make it roll away by gently pressing on its back. The wheels are filled with beads that fly around as the caterpillar zooms across the floor. The toy reinforces the concept of cause and effect, and prompts your baby to strengthen his gross-motor "Go Go Baby" muscles. $15 at Discovery Toys


And Santa, please bring shares of Fisher Price stock for mom and dad...

Your Turn
Got a favorite stage two toy recommendation for Santa? Want to tell us what gifts are you giving to your children with Ds this year? Please do, inquiring minds want to know :-)

Monday, November 23, 2009

Peek-a-Boo, I See You

peekaboo

A while back it was thought that object permanence—the ability to understand that objects still exist after they are no longer in sight—was an intellectual all-or-nothing milestone. New research1 is showing that the concept of permanence is a process that begins with object identity, moves into understanding the transformational event in which it participates, and then ends with an understanding that objects themselves are permanent.

Huh? In English please...

What this really means is that babies don’t just one day “get it” that objects that have disappeared are still there. It is a long complicated process of understanding that begins around 3-5 months old (and perhaps even earlier) and continues until about 24 months old. Babies learn the concept of permanence in pieces. For example, a baby who is just beginning to understand permanence will look for a toy that has been covered by a towel by lifting the towel but this same baby will not do this if the toy was placed under the towel from a person’s hand. This is because the baby expects the toy to reappear where he last saw it, in the person’s hand. If he does not see it there, he will not yet think to look under the towel. In this case the baby thinks that the towel method makes things permanent but that the hand method does not. He does not yet understand that the property of permanence is inherent to the object not the method of disappearance.

Peek-a-boo games have always been one of the best ways to encourage an understanding of object permanence and given the recent new theories they still remain the best way to teach this concept. However, it makes sense to utilize several varieties of the peek-a-boo game to stimulate the various steps of understanding.

Peek-a-Boo Variations
If you use a particular tone and cadence when you play peek-a-boo variations, your baby will begin to anticipate that something is going to disappear/reappear. This will be helpful to your baby as the games get more complex.

1. Hands covering face or just eyes. This is the classic newborn peek-a-boo game that infants love. You can mix it up a little by asking baby while your face is covered, “Where’s (mommy, daddy, whoever)?” and then saying “Here I am” when you remove your hands, or by starting with “Peek-a” and ending with a rowdy “boo” when you uncover your face. You can also change your expression before and after you cover your face to stimulate your baby’s interest in the game.

2. Pop up person peek-a-boo... Use a hand towel or burp cloth to lift up in front of your face so that you “disappear” and then lower the cloth as you say “here I am” or “boo”. If your baby is not remaining focused on you when you play this variation, only lift the towel up over your nose so that your baby does not lose eye contact with you.

3. Peek-a-boo baby... Use a small scarf or burp cloth to gently cover your baby’s face (start by only draping the cloth over part of your baby’s face) and say, “Where’s (baby’s name)?” and then pull the cloth off and say, “There he is!” Soon your baby will pull the cloth off by himself and before you know it he may even initiate the game by pulling his bib or blankie up to his face.

4. Peek-a-boo books... Read books to your baby that have fold out pages or flaps. Use the flaps to play peek-a-boo by saying “Where’s (anything under the flap)?” and then “There it is” when you pop open the page. One of our favorite peek-a-boo books is Farm Peekaboo by DK Publishing.

bunny5. Jack-in-the-box pop up toy... You probably shouldn't use a traditional jack-in-the-box musical toy for this game early on since the music takes a while and the “reappearance” requires the means-to-an-end motor skill of turning the knob. We have a hand-me-down pop up bunny that works perfect for playing a traditional peek-a-boo game using a pop up toy. At a later stage when your baby is able to sit and perform the fine motor skill of turning the knob, I would recommend the plastic musical jack-in-the-box available at beyondplay.com. It is very easy to manipulate the knob and does not require the fine motor skills that a traditional metal jack-in-the-box knob does.

6. Hidden toy peek-a-boo... place a small favorite toy on a highchair or swing tray, or the floor, in front of your baby. Cover it with a towel or other cloth and then ask your baby, “Where’s (the toy)?” Pull the cloth off the toy as you say “here it is” and then encourage your baby to remove the cloth by performing the action hand over hand with your baby. Keeping in mind what we now know about the early concepts of permanence, do not spice things up by placing a toy in your hand and then sliding in under the cloth or by switching the toy that is already under the cloth with a different toy.

7. Peek-a-boo picture of you... Print a 5x7 or larger photo of your face and affix it to a piece of cardboard. Raise the photo in front of your face so that you disappear behind it. Say to your baby, “Do you see (mommy, daddy, whoever)?” and then lower the picture while saying “Here’s (mommy, daddy, whoever)”. This game not only helps your child understand permanence but also helps him to understand transference between a picture of an object and the real thing.

8. Paper towel roll peek-a-boo... Take a paper towel roll and as your baby watches, stuff a small scarf or cloth into the end of it. As you ask your baby where the cloth is slowly pull it out of the other end of the roll. You can also use hand over hand to help your baby pull the cloth out of the roll himself. This is a more advanced peek-a-boo game because the object is not reappearing the same way it disappeared and so for a while your baby might think it is a different scarf coming out though it’s doubtful he’ll tell you that ;-)


(Research Credit: New Findings on object permanence: A developmental difference between two types of occlusion—M. Keith Moore and Andrew N. Meltzoff, University of Washington, USA)

Wednesday, November 11, 2009

Calling All Advocates (That’s You!)

The Center for Disease Control wants to revamp their web pages about Down syndrome. They are working with Lisa over at Genetically Enhanced. She has shared this chance to give feedback and make suggestions with all of us. Wow, what an opportunity to help get accurate and encouraging information out there!

Go on over and find out how to get involved. The CDC requires feedback by Nov. 25th, so hurry up :-)

Tuesday, November 3, 2009

The Stage One Oral Toolkit

In a way, speech therapy begins naturally for all babies on day one with eating, crying, yawning, rooting, burping... As those instinctual actions occur, a baby’s brain receives information and mouth muscle coordination beings. A baby’s brain also receives information about its mouth through stimulation, texture, and pressure (as well as taste... but stage one babies are usually getting only one yummy taste via bottle or breast.) Our babies need a little bit more information and more practice as the mouth masters its jobs.

Enter the oral toolkit, a treasure chest of goodies you can use to orally stimulate and train your baby. Most items can be purchased in a department store or baby store, some must be ordered online, and for those on a tight budget... your fingers are free :-)

The Nuk Brush



The Nuk brush is great for oral stimulation inside and outside of a baby’s mouth. On the outside, you can roll it down from just under your baby’s nose to her upper lip. You can do this same movement all the way around her mouth, rolling toward the mouth with each stroke. This stimulates lip closure. Used inside the mouth, the textures expose your baby to new sensations. Later on it can be used to introduce trace amounts of food to a beginning eater. $3.70

Red Cross Infant Oral Care Kit


This kit has a couple very useful tools in it. The finger infant toothbrush is used for gum tracing exercises and applying pressure to the lower jaw to encourage and strengthen the bite reflex. The gum stimulator is perfect for tongue walking and for gently pressing the center of the tongue to encourage your baby to make the bowl shape with her tongue. You can use the infant toothbrush on occasion in place of the Nuk to expose your baby to different textures. $7.99

The First Years Massaging Action Teether


The First Year's "Star" teether has different textures on each star tip. When baby puts pressure on a tip, the teether vibrates and wakes up the mouth muscles. This is also a great tool for demonstrating cause and effect. Though it is slightly big for a newborn, it can be used by a parent in small doses to stimulate the baby’s lips and cheeks. This teether is easier to trigger than other brands. 7.99

The Grabber


Easy to hold, your baby will love to mouth and bite on the Grabber teether thereby strengthening jaw muscles and control. It is a smooth teether and great for babies with who are showing signs of texture aversion. $6.50

Soothie Pacifier


A pacifier is good for letting your baby practice sucking and keeping his tongue down. I had some unused orthodontically correct pacifiers (my boys wouldn’t take them) and I tried to use them but was quickly corrected by our speech therapist who said the shape is not good for babies with Ds. Who knew? The hospital style Soothie is a good paci to use and luckily most hospitals will give you a handful on your way out the door but if not, you can get them online. Two for $4.79.

Your Finger
Nice clean fingers can be used to tongue tap, press the jaws to stimulate the bite reflex, rub the gums, gently pinch-pull the lips and cheeks, and trace lines on baby’s cheek skin. Your speech therapist, or a lactation consultant who has experience with children who have Ds, can show you many exercises you can use. You can also find detailed oral stimulation techniques in the books, Early Communication Skills for Children with Down Syndrome and The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles.

Z-Vibe


The Z-Vibe is a great tool for babies who have moved on to stage two but it is too powerful for newborns. I will do a post on this tool in the future.

Your Turn
Do you have a tip or trick you used for your baby's oral aerobics? Do you love/hate any of the tools in the toolkit? Share your thoughts with us.

Monday, November 2, 2009

Shake Your Bootie

There’s no better way to celebrate a Buddy Walk than with a new pair of homemade sweater booties. Lianna over at My Life With Gabriel is giving away a free pair everyday this week in honor of Canadian Down syndrome awareness. All you have to do is visit her blog and leave her a comment to be entered in the daily drawing. Well, what are you waiting for... shake your bootie on over there!

Wednesday, October 28, 2009

He's Got the Look

Or rather, he’s got the leggings...

Joaquin from Three’s A Charm will be sporting some pretty cool leggings in the near future... since his mom and dad were the lucky winners in our Knotty Baby Wear leggings contest.

Random.org picked the 11th entry



Congratulations to Hector and Jennifer Varanini Sanchez. Email me and I’ll hook you up with Amber.

Thanks for playing everybody, and remember the leggings super sale is on until Friday, December 18th.

Thursday, October 22, 2009

Everybody Should Do It

Imagine that you are a stay-at-home parent to three children and your spouse just had open heart surgery. There’s no short-term disability, no vacation hours to use up. There will be no paychecks during your spouse’s six to eight week recovery period. What a nightmare. Aren’t you glad this isn’t happening to you?

Well, the Flege family is going through that nightmare right now and we have the opportunity to help them out. CJ over at The T21 Traveling Afghan is holding an online raffle to benefit this family. Throw a few bucks into one or more of the raffle pots for the items you’d like to win (you can do this by clicking the donate button associated with the item you want and then use PayPal to transfer the money.) The winners will be chosen randomly after the raffle ends.

Go on over there and check it out. There are some really nice items up for raffle (ahem, some of which I made by hand.) Let’s show our support and help a family in our community who needs us right now :-)

Sunday, October 18, 2009

He’s Hot, He’s Cold, Hot, Cold...

Young babies often have trouble regulating their body temperatures. A baby's body surface is about three times greater than an adult's, compared to the weight of his/her body. That means babies can lose heat much faster than you or I would. It also means they can overheat quickly as well.

Since babies are so susceptible to body temperature changes depending on their environments, we have the tough job of keeping them just right. Hats, blankets, mitts, and the infant seat cover are helpful when you are transitioning your baby from one place to another such as from home to the car, to the store, to the doctor’s office, and back home again.

While those basics that go on and off, or open and close swiftly are important to have, they just don’t cover everything when it comes to babies with Down syndrome. Our little ones very often get cold legs and feet even when the room temperature is an average 70 degrees. We could bundle them up but most babies do not enjoy having their lower extremities constricted by layers of stockings, socks, and shoes. I don’t blame them... I remember the itchy claustrophobic feeling you get when you wear tight panty hose and shoes all day.

What’s the solution?
Leggings. Soft knit leggings that slip on and off easily and can cover the legs as well as the entire foot or only part, leaving those prehensile toes free to play.



Not only are leggings the ideal solution for hanging around the house, but they are a godsend for babies who are doing time in the hospital or have other reasons why pants are uncomfortable.

I think leggings are so useful and snazzy that I got together with Amber from Knotty Baby Wear (who happens to think babies with Ds are awesome) to come up with a Leggings giveaway. That’s right... Amber is going to give one of you three pairs of her gorgeous leggings just because she thinks our kids rock!




How to Enter
To enter to win the leggings giveaway, visit Knotty Baby Wear and choose the three pairs of leggings you would like to win. Plan on spending some time over there because she has pages of fantastic selections to choose from. Amber's leggings fit children up to age ten, so those of you with "big babies" can enter as well! Come back here and post your choices in a comment. Ten days from today, on October 28, a random winner will be chosen. The winner will receive his or her selections compliments of Amber.

Christmas Sale
And if you’re not the winner, never fear, Amber is offering us the best sale she has ever had on her site. From now until Friday December 18th, order three pairs of leggings (regular price $8 each) for only $18 with free shipping. When you order your selections, put the sale code DS.MAMA in the comment box and Amber will adjust the pricing on her end. (Etsy doesn’t allow for discounts, so Amber has to do it this way.) So go on over and buy your favorite baby some stylin’ leggings for Christmas.


Picture Credit: That handsome boy is Jax from Jaxson's Fight.

Wednesday, October 14, 2009

Surprise

A while back I did a poll about when you found out your baby had Down syndrome. The results (way, way down the left column) indicated that around 60% of babies that come with extras come as an after delivery surprise.

There are lots of reasons for this. Maybe you didn’t care about prenatal testing... que sera sera... or maybe you did but something got missed. Doesn’t matter now. You have a wonderful new (or not so new :-) person in your life.

What does matter is that there are a lot of misconceptions about people with Ds and their parents. For one, there are some pregnancy/birth statistics that are skewed (and posted all over the internet). You who were delivered surprises can help to straighten that out (even if you didn't vote in my poll).

Please read the Oz Squad blog post, “What’s In a Number” and then, if you qualify, take the prenatal testing poll. Your participation is greatly appreciated.

Monday, October 12, 2009

It's a Boy, and Another Boy, and Another Boy!

Lots of congratulations are in order... We have three new baby boys to celebrate. Go visit them and send them some bloggy baby love.


His Highness Henry, from Three Little Kings, has arrived.



Elijah is the son of Scott and Beth over at Hope for Elijah.



Kheaven is the little prince over at +Bits and Pieces+.


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.

Sunday, October 11, 2009

Sweet Baby Girl



Beautiful Maddox is the daughter of Chad and Kim over at Chromosomally Enhanced. Make sure you pop by and congratulate them on the lovely addition to their family.

Tuesday, October 6, 2009

The Best Part—Fall Giveaway

Many times when I am speaking about my daughter I will say something like, “The best part about Down syndrome is...” and inevitably if the person I am talking to doesn’t have a child with Ds I get a raised eyebrow before I even finish my sentence.

As if one can’t imagine there are good things about Ds! Well, I have news for you... there are actually lots of really cool and wonderful things about people with Down syndrome that seem to be directly influenced by that extra chromosome.

Today I will tell you my favorite part.

Summer is my last baby. This was known and agreed upon before she was even conceived. I love babies... I truly enjoy my time in “babyland”. But as any parent of a typical child can tell you, it’s short-lived. From infancy to a walking and talking toddler flies by. And woe to you if you blink, you’ll miss something that will never come again.



When a child has Down syndrome, a parent gets the pleasure of meandering through babyland. All of the stages last longer and are more defined. You need not worry about taking a nap with your eight month old and waking up with a ten month old. After raising two typical boys whose baby books have many blank pages (guess I must have napped quite a bit ;-), this came as an enjoyable relief to me.

I love babyland. I love the fact that my 15 month old still looks and acts like a baby. I’m in no hurry and neither is she.

Your Turn
What do you think is the best part about Down syndrome?

Answer this question by November 3 in the comments section of this post or in a post of your own (but make sure you comment here to let me know!) and you will be entered into the DSNM Fall giveaway. During the first week of December, I will post a list of my other favorite things about Ds and link to all your posts. I will also announce the random winner who will win the prize pack listed below.

The Fall Giveaway Prize Pack
It’s books! One for you and one for your baby. For the parent, it is Gifts 2: How People with Down Syndrome Enrich the World and for your baby it’s Little Feet Love (which I couldn’t even find on Amazon, so I'm linking its sister book). Oh, and of course some sweets for after the little ones are in bed... a Lindt Classics Caramel Assortment box of candy.

Friday, October 2, 2009

Do You Live in Michigan?

And do you have Priority Health insurance? So far so good.... Did your baby have heart surgery at MOTTS Children's Hospital at the University of Michigan? Did you get PH to cover it?

PH is denying Kaitlyn’s upcoming surgery if it is performed at MOTTS. Kaitlyn’s mommy needs to find at least one of the families who got the surgery approved there. If you answered yes to all these questions, can you please go visit Jenee and tell her?

Thursday, October 1, 2009

Facebook Blunders



I joined Facebook today (sorry Dan.) You all probably already know this since I think I accidentally emailed the whole world about it. But in case you didn't get my spam email, my name out there is Sandra Dsmama.

Facebook is quite demanding compared to say... MySpace. Between confirmations and validations, I can’t seem to get anything to do what I want it to. And worse, I can’t find half of you because you all have real names, lol.

So I will thank you now for bearing with me as I figure it all out.

Monday, September 28, 2009

One Year Later

Last week I shared my inspiration with you. You got to meet my darling Summer Rain. She had a rough start and her long journey home may have made you cry.

I'll make that up to you this week ;-)

Here she is one year later, full of love and laughter, and guaranteed to put a smile on your face.

Tuesday, September 22, 2009

My Inspiration

I try not to make this blog about me and mine but this week is an exception. September 24th marks the anniversary of my daughter’s open heart surgery.

My baby was born with two major heart defects. She spent 17 weeks on the ICU front lines. She is a warrior, and the toughest baby on my block. Today I am thankful that her health is perfect.

For this week only I am going to put aside my shyness and invite you to come meet my baby girl and the rest of the gang.

10/13/09 Update
If you missed seeing the video, it will be back next year in Sept.

Friday, September 11, 2009

Umbilical Cord Idiosyncracies


My daughter spent some time fighting monsters in the NICU. Most days she hung out in just her diaper so we had a good day-to-day view of her umbilical cord stump. I let the nurses know right away that if she should lose it when I wasn’t there, they were to bag it for me to keep.

(Enough with the eeewing... I had no idea it was gross and uncommon until the NICU nurses gave me the funny look and pointed out that usually they just throw them away.)

The average umbilical cord stump falls off within eight to 21 days, with most gone by two weeks. When my daughter hit four weeks old, the staff started commenting that it was a little weird that hers was holding out. Her NICU pictures remind me that sometime between day 35 and 38, a pediatric surgeon played with it until it came off. I’ll bet he was one of those kids that had a loose tooth out within days.

“Could it be the Down syndrome?” I heard the doctors wondering during rounds one evening. No one knew. I forgot all about it until I read out here in our blog community that someone else’s baby hung on to their cord stump for a long time as well. My curiosity got the best of me and I started looking into it.

Who knew the umbilical cord could be so interesting... there are umbilical hernias (20% of general population), two vessel cords (1 in 100-500 general pregnancies), late cord stump loss, and short umbilical cords.

Your Turn
Are babies with Down syndrome prone to umbilical code idiosyncrasies? Let’s find out. Take the poll <--- left column 5 blocks down. Please comment and let us know anything interesting that comes to mind concerning your child’s cord or umbilical cords in general.

Wednesday, September 9, 2009

Baby Pictures, Please

By now you know ds.mama loves showing off darling babies from our online community. And, I am sure you enjoy looking at all these beauties.

As I visit our blogs and read about our families I often come across a picture that strikes me and I tuck it away in my mind for a future post. Then when the time comes, I forget who I saw where doing what... (let’s blame that on my four kids.) If I am lucky, I remember where the perfect picture for my post is but I am not sure if I have permission to use it.

Which brings me to my request. If you are willing to let me use pictures I come across on your blogs of your children, please leave me a comment saying so (even if I have already used a photo of your child in the past). I’ll make myself a file and the next time I see your cutie doing just the perfect thing, I’ll save the picture with my post notes.

If you are willing to be on a picture email list that I will use to make calls for specific types of photos (e.g., babies eating, reading, signing, etc.) then please email me (ds.mama at yahoo dot com) with your name and email address.

Thank you, a great big one, to those of you who have already let me post pictures of your babies and to those of you who decide to let me in the future.

Monday, September 7, 2009

Mama Bear, Mama Bear, What Do You See?



Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.

Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.

Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.

Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.

Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.



Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)



Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.

Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.

Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot.



Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.

Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.

Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.

So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.


Picture credits: Kacey's daughter Ella Grace, and Lisa's son Finnian

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.