Down Syndrome New Mama

Calling All Beautiful Babies

2012-01-26T12:14:00.006-05:00

I have never seen a baby with Ds that didn’t melt my heart with stunning eyes or an adorable smile, and I would bet that Melanie from Melanie Rose Photography hasn’t either.

Melanie has embarked on a photography project, Joel & Friends, that aims to showcase the beauty and essence of children with Down syndrome. She kicked off the project in NYC when she photographed Noah and she hopes to complete the project by late Fall of 2012. Throughout the project, Melanie will be blogging the results of the photo shoots and preparing for exhibitions and ultimately a gorgeous coffee table book.

How to Get Involved
Melanie plans to travel across the US setting up multiple photo shoot appointments in major cities. She has a Facebook page and a Twitter feed that will keep us informed of activities. Families that participate in the project can expect to spend about 30 minutes in the photography session. In exchange for permission to publish the photos captured in the session, parents will receive digital copies of medium resolution photo files (great for producing high-quality prints up to 8 by 10 inches) and the option to order professional prints through Melanie Rose Photography at cost.

Don’t miss this awesome opportunity to show off your beautiful child! Email Melanie at melrose (at) melanierosephotos (dot) com to let her know you would like to participate. Please put your home city and state in the subject line of the email.

I gotta admit, I am so looking forward to drooling over darling babies like this one:

Noah from Noah's Dad

Which Walker is Best?

2011-03-26T12:59:00.003-04:00

Just because they named it a walker doesn’t mean it will help facilitate independent walking for your child. There are no studies that support the idea that putting your child with Down syndrome in a walker will help him to reach that milestone sooner. In fact there is some evidence that shows that children who use walkers actually learn to walk on their own later than their peers.

Pros & Cons of Walkers
Like any baby contraption that has a seat and some toys attached, a walker can be useful when you need to put your child in a safe, entertaining place while you answer the phone or cook dinner.

If your child is not ready for a walker, there are risks involved with putting him in one. A walker allows your child to bear weight on his joints that he may not be ready for if he does not have the core strength and stability to handle it. These abnormal forces on the joints can cause damage and can also teach your child patterns of posture and movement that are not typical for his development. Most walkers interfere with the child’s ability to see his legs and feet and therefore hinder his ability to receive important motor information about how his body works.

Having your child in a walker for long periods of time can also hamper sensory motor development because it controls what the child can “go for” and puts a barrier between the child and the world around him.

When a Child Can Benefit from a Walker
If your child has the desire to be up and moving around and can walk along the couch or coffee table, or can walk while holding on to a push toy, or can walk while you are holding his hands, yet cannot walk independently due to trouble with balance, susceptibility to fatigue, or some other underlying cause for delay, he might benefit from a therapeutic posterior walker.

A posterior walker provides the support and mobility a child needs to be able to walk around, yet does not inhibit proper gross motor and sensory development. A posterior walker should be introduced to your child by a trained physical therapist and his time using it must be closely monitored by a caregiver or therapist.

Ok, So...
Now that you may have changed your mind about buying a commercial walker, you might want to throw the big question out there, “When should my baby walk?” There is a very large age range for this skill and many factors determine when it comes. Some children with Ds start walking as early as 14 months, others are over the age of 4 before they master it. So unless a doctor or therapist has indicated that there may be a secondary cause for delayed walking, be patient... it will come. And, for those times you need to confine your child for his safety (or your sanity), stick with an exersaucer or playpen.

Back in the Saddle

2011-03-18T12:26:00.002-04:00

My blog “maternity leave” is officially over... and while I was away so much has been happening in your world. There have been lots of pregnancies, births, and adoptions, many new blogs and new blog addresses, new resources and goodies, and lots of new questions.

So where should I start? First off, if you are pregnant with a baby who has been diagnosed with Down syndrome, if you had or adopted a baby with Ds over the last 10 months or so, or if you have a new blog or blog changes, please email me so we can share your stories.

I have been reading many blogs, catching up with new little ones... and I am reminded of how much milestones seem to matter to us parents in the beginning. We are nervous and wondering how this new child will fare... we still believe that hitting those early marks is important, a sign of how well our baby will “function”. We still have so much to learn and so much to let go of.

With that in mind, I will repost the very first ds.mama post “Stage Not Age”. The link to the development journal has been updated, so if you have already read this post and could not get your copy, try again.

Stage Not Age

One of the first things to get over when you have a newborn with Down syndrome is looking for milestones based on your baby’s age. We have all heard stories about so-and-so’s baby who held his head up before the placenta was delivered and walked at six months old. Most of us have read some form of a What to Expect book and have a general idea of how old a baby is when certain things happen. Flush that knowledge from your mind and try not to pay too much attention to Mrs. So-and-so.

Babies with Down syndrome develop along the same path as a typical baby, meaning they reach most milestones in developmental order but they do it on their own schedule. They also have a lot more milestones to celebrate. Who knew there were a zillion sensory and gross-motor skills that are reached before a baby rolls over? You are going to need a whole bunch more cute stickers for that First Year Calendar than the measly 10 that came with it.

There is an amazingly detailed resource out there for setting expectations for your baby’s development and tracking your child’s progress from birth through about the first five years. It is called the The Developmental Journal for Babies and Children with Down Syndrome. It is put out by the English government program, Early Support. The material is provided for free online in pdf format. When you see the journal you’ll realize that this group has put a ton of research and effort into this project, and you will be thankful to the Brits for this contribution to your resource arsenal.

The journal includes the five areas of development (communication, social-emotional development, cognition and play, motor and sensory development, and self-help) and is categorized by 11 developmental steps. For each item, there are three columns to track your baby’s progress. There is also room for adding notes and questions.

Enjoy your baby's stages because while they sometimes seem like they'll last forever, they won't. And, make sure you go get your journal!

Goody Bag Winners

2010-07-22T15:19:00.000-04:00

The winning numbers were 1 and 4, both of whom are pregnant :-) Congratulations Tara and Kim. Email me your addresses and I will send out your packages right away. I’ll split the prenatal DHA between you.

Thanks to everybody who entered and enjoy the rest of summer. I will see you in the Fall.

One Last Thing

2010-07-11T12:14:00.002-04:00

Ok, so I know I said I was taking a break from this blog and I swear I am. But, as I was getting things ready around here... figuring out what to pack and whatnot... I came across a bunch of little goodies I had been meaning to give away.

And then last week, Jasmine over at Windmills and Tulips kindly gave me some MSB Plus V7 samples to give away. MSB Plus V7 is the NuTriVene-D competition.

I have two grab bags of odds and ends, and some Nordic Naturals Prenatal DHA samples to give away.

To enter just leave a comment. Please let me know if you are pregnant and I’ll add your name to that drawing as well.

Entry deadline is Sunday July 18th. Good luck.

A Pregnant Pause

2010-07-06T17:38:00.002-04:00

I have to tell you that I love this blog but for now I cannot give it the attention it deserves. I have several posts in the hopper, and many many more swirling around my brain. But these days I am suffering from feeling like I am nine months pregnant with a million things to do before my “twins” get here. And so I must take a rest until I go out on maternity leave.

What’s coming up? Lots of birth announcements, a couple financial planning posts, stage three toys, another trip to the library, and an in-depth look at several alternative therapies. There will be more polls, more giveaways, and more gorgeous babies to see.

I thank you all for your support, and your comments which make this blog useful to so many other parents, and I look forward to getting back here at the end of summer with another baby to try things out on ;-)

In the meantime you can always email me if you have a question, birth announcement, or want to get your blog added to the rolls.

And the Winner Is...

2010-06-27T22:55:00.001-04:00

Has anybody noticed what a slacker I am? This adoption paperwork is overwhelming me. I nearly forgot that Spring is over which means it is time to draw the winner of the goop giveaway.

Tina in TX. Must be beginners luck, :-) Tina, email me and I will get your gift out to you.

Eat Your Choline

2010-06-16T10:58:00.002-04:00

Are your pregnant with a baby who has Down syndrome, or nursing a newborn? A recent study performed by Cornell University has shown that more choline given to developing babies with Down syndrome has lasting cognitive and emotional benefits.

Where can you get choline? There is a lot of it in eggs, beef, cauliflower, navy beans, tofu, almonds, peanut butter, and in Nutrivene-D. The recommended daily dose of choline for infants is about 150 mg a day. For pregnant moms it is 450 mg and for lactating moms it is 550 mg.

I am not sure how many eggs or how much beef liver you would have to eat to pass that much choline to your baby through breast milk, so you may want to ask your pediatrician if Nurtivene-D is right for your child.

To get you started eating your choline, here are two recipes:
For baby...
Vegi Puree (32.3 mg total choline)
1 oz. breast milk (4.5 mg choline) or milk (4.0 mg choline)
1oz cooked navy beans, mashed (8.6 mg choline)
1oz cooked cauliflower, mashed (10.9 mg choline)
1oz cooked carrots, mashed (2.5 mg choline)
1oz cooked sweet potato, mashed (3.7 mg choline)
1tbsp melted butter (2.6 mg choline)
Put in all in the food processor or blender and puree it until you reach the consistency your baby likes.

For you... (and baby, lol)
Nigerian Baked Beans whose leftovers become Summer Stew (284 mg total choline)
(from Madhur Jaffrey's World Vegetarian (modified by L.L.Barkat)

(ds.mama substituted navy beans for Great Northern beans and shortened the cooking time.)
Stir briefly over low heat..
1 onion, chopped and already sauteed until light brown (5.7 mg choline)
4 cloves garlic, minced (2.8 mg choline)
1 TB curry powder
Add onion and garlic mixture to...
1 1/2 cups dried Navy Beans, already soaked and cooked until tender (retain cooking water) (144 mg choline)
2 tomatoes, chopped (16.4 mg choline)
1 1/2 TB peanut butter (15 mg choline)
salt and pepper to taste
Bake all together about 45 minutes or until tender and sauce is thickened.

For Stew the Following Evening... ( adds about 100 mg choline)
• cut 4-5 potatoes (22 mg choline per potato) into 1/2 to 3/4 inch chunks, add to beans with enough water to cover, and cook 15 minutes or until tender
• garnish with one onion sliced very thin, browned until crisp
• add a generous scoop of herbed butter (5.2 mg choline) and stir until melted

Picture credit: L.L. Barkat.

Five Great Goops

2010-06-06T21:56:00.007-04:00

Glop, goop, and goo... some of my favorite things for babies (and mamas) come in bottles and tubes.

Lansinoh Lanolin
There is a good possibility that my breast feeding days would have been over early on if not for Lansinoh lanolin nursing cream. In the beginning, even if you are doing it right, breast feeding can be extremely painful on the nipples. This cream makes a real difference and it doesn’t have to be washed off prior to nursing. If you are pregnant and thinking of nursing, get some. The hospital you deliver in will probably have travel size tubes of it, so make sure you remember to ask for it.

detachol
One of our favorite nurses gave us a bottle of detachol to take home, a PICU parting gift. This magical goo removes anything that gets stuck to your baby’s skin or hair. Band-aids, electrode stickies, medical tape, tree sap, gum... you name it, detachol will get it off pain free.

Boudreaux’s Butt Paste
I’m not sure why this diaper rash cream seems to work better than the rest, but my babies’ bottoms have sworn by it for years. It looks like mud, smells pretty, and clears up irritated skin in record time. For an almost free sample (you pay postage) visit buttpaste.com.

Nordic Naturals DHA Oil
I have written about the wonders of DHA/Omega 3 oil in the past. Since then Nordic Naturals has introduced a DHA product designed for infants. It comes in an easy dose bottle and is unflavored (though I am not sure if that’s a good thing with fish oil, lol).

Coconut Oil
Babies with Down syndrome respond well to body massage and therapeutic touch. There are a lot of massage lotions and oils on the market but I prefer to use coconut oil because it doesn’t clog pores and has a very low allergy risk compared with other nut oils. It doesn’t leave baby’s skin greasy and it doesn’t stain clothes. It smells delicious (if you like coconut :-), has a long shelf life, and protects against dry skin. As if all that weren’t enough, there are even Internet rumors that coconut oil is beneficial against alzheimer’s disease.

Spring Giveaway
It is still Spring... thank goodness I didn’t miss an entire season without giving a little something away ;-) This time you can win a bottle of Nordic Natural’s new baby DHA product (and a cute growth chart for your wall). A representative from Nordic Naturals contacted me to say how pleased the company was to know that their product is especially beneficial to children with Down syndrome, and they offered to donate this season’s giveaway goodies. To be entered to win, just leave a comment on this post by June 20th.

Your Turn
Got a favorite goop? Tell us about it. We love to hear what other people are using and why. If you comment, you will be entered into the drawing so if you don't want to win, make sure you tell me to keep you out of it.

We’re Expecting... TWINS! Sorta...

2010-05-25T13:10:00.000-04:00

Well, I promised you big news and here it is... we are adopting two little girls from the Ukraine. They aren’t really twins, in fact they are a couple years apart in age, so it is really more like a two-for-one special ;-)

We invite you to follow along on our adventures.

(And now you know why I have been a bit of a blog slacker for the past two months.)

I'll be there...will you?

2010-05-23T08:47:00.003-04:00

Guest post by Kelli

The National Down Syndrome Convention is fast approaching...July 16th-18th in Orlando, FL. I'll be there...will you?

Last year Monica over at Monkey Musings designed badges for all moms that attended and blog about their life with Down Syndrome so that everyone could be easily identified. This year, as she is expecting their 5th child (brave, brave woman)...she has passed the baton, to me! So, if you are attending and would like a badge, please let me know by commenting on this post or emailing me at livinglifewithes (at) yahoo (dot) com.

I hope many of you do attend...I cannot wait to meet you and shake your hand...oh, who am I kidding, I would love to give you a big fat hug... you have become an extention of my family through your encouragement and support. I can't wait to see your smiling faces in person and tell you how much I appreciate you sharing your lives through your blogs.

If you haven't registered yet..make sure you hurry over to the website and do it now, you have to register before June 10th to get the early bird rate (it sounds like I am talking about a meal, doesn't it!). If you haven't decided whether or not you are going...well consider that it's in ORLANDO where there is always an abundance of sunshine and fun, especially for the kiddos!

I would like to make sure that everyone that plans on attending gets a badge so if you woudn't mind helping me spread the word, I would really appreciate you linking back to this post from your blog or mentioning it in some way so that I can make sure that all DS bloggers receive a badge if they want one.

Hope to see you all in July!!!

(Note from ds.mama... Well, we were planning on going and then something big, something huge happened (I'll tell you about it later this week ;-) and we had to change our plans for this summer. We'll miss you guys and Mickey too.)

Purees, the First Foods

2010-05-10T15:18:00.002-04:00

Stage two feeding is so exciting... it’s the introduction of real foods. Mushed up, watered down pureed foods, but cereals, fruits, and vegies just the same. Really, who isn’t totally psyched to run out and buy that first box of rice cereal and a couple teeny tiny jars of apples and sweet potatoes?

You don’t have to limit yourself to the baby food aisle though... you could make your own purees. It is easy and cheap. It is also healthier since the high heat processing in commercial baby food depletes the nutrient levels in those jarred foods. The best reason to make your own is because it tastes better and it tastes like real food... the real food your baby will be feeding herself in a few months.

A Few Guidelines
When introducing a new food, wait three to four days before introducing another. Having your baby eat the new food for three days will help you to figure out if your baby is going to react to it. Allergies will show up as a rash, hives, diarrhea, gas, congestion, or puffy, watery eyes.

Always cook vegies and fruits before you puree them, with the exception of bananas and avocados. Why? Because it makes the food easier for your baby to fully digest it.

What is a proper serving size for a baby? The first couple times you introduce a new food, do not give your baby more than two tablespoons per serving. Once you know your baby is not allergic to the food, you can feed her a serving somewhere between an 1/8 to a 1/4 cup, which is 2–4 tablespoons, or 1-2 ounces. However, if your baby turns away or acts disinterested, trust that she is done eating and do not push her to eat more. In this beginning phase of eating real food, it is more about exposure and practice rather than nutrition and calories. Your baby is still getting her nutritional and caloric needs met through nursing or bottle feeding.

To make some of these recipes it would be helpful to have a steamer basket and a food processor of some sort... a blender will work too.

5 Yummy First Purees
Baby Rice (15 servings, can freeze) B&T
1/4 cup white rice (short-grain like Basmati)
breastmilk or formula
Rinse the rice under cold water. Put it in a pan with just enough water to cover it. Bring it to a boil and stir it. Reduce the heat to low, cover the pan, and let it simmer for 20 minutes. Puree the rice in a blender with the breast/formula milk until smooth.

Pear Puree (2-3 servings, can freeze) B&T
1 small, ripe pear
2 tbsp. water
Wash, peel, core and cut up the pear. Put the pear chunks in a pan with the water and bring to a boil. Cook for about 5 minutes until the pear is tender. Cool and then puree using a little of the cooking liquid.

Carrot Puree (1-2 servings, can freeze) B&T
1 small carrot
1-2 tbsp water
Wash, peel (or scrape) and slice the carrot. Steam the carrot for 10 minutes. Cool and then puree in a blender with a little of the cooking water.

First Applesauce (8-10 servings, can freeze) MM
3 Medium sized Golden Delicious apples (or other low acid mild apples)
water as needed
Wash, core and slice apples but leave the skin on during cooking. Place slices in a steamer basket and set in a pot of already boiling/steaming water. Cover tightly and steam for 10-12 minutes (add more water as necessary). When the apples pierce easily they are done. Set them aside to cool and save the cooking water. Scrape the skins off and puree the apples with a tablespoon of cooking liquid for each apple.

Avocado Puree (1-2 servings, doesn’t freeze so you can eat the extras ;-) B&T
1/2 small avocado
Peel the avocado and remove the pit. Scoop out the flesh and cut out any dark spots or hard spots. Mash until it is smooth and creamy. Serve right away.

5 Combo Purees
Pear, Apple, and Banana Combo (4 servings, doesn’t freeze) HB
2 tbsp. pear puree (see above)
2 tbsp. apple puree (see above)
1/2 small ripe banana, mashed
Mix all three ingredients together and serve immediately.

Broccoli and Pea Puree (2-3 servings, can freeze but is better fresh) B&T
3 broccoli florets
small handful of fresh or frozen peas
a little breastmilk or formula
Steam the broccoli for 7-10 minutes, adding the peas 1 or 3 minutes (depending on if they are fresh or frozen) before broccoli is done. Cool and then puree in the processor, adding a little bit of breast/formula milk to counter any possible bitterness from the broccoli.

Butternut Squash and Pear (4 Servings, can freeze) HB
1 medium butternut squash
1 ripe pear
Peel the squash, cut it and take out the seeds. Chop it up and steam the pieces for about 12 minutes. Peel, core, and chop the pear. Add it to the steamer pot and cook for 5 minutes longer, or until the squash is tender. Puree in the processor.

Mashed Banana Flambe (2 servings, doesn’t freeze) HB
1 tsp. butter
1small banana, peeled and sliced
a pinch of cinnamon
2 tbsp orange juice, fresh if available
Melt the butter in a small skillet. Stir in the sliced banana, sprinkle with cinnamon and saute for 2 minutes. Pour in the orange juice and cook 2 minutes longer. Mash with a fork and serve once it has cooled enough.

Sweet Potatoes with Cinnamon (7 servings, can freeze) HB
1 sweet potato, peeled and cut into chunks
pinch of cinnamon
3 tbsp breastmilk or formula
Put sweet potato chunks in a pot and cover with water. Bring to a boil and simmer for about a half hour or until tender. Drain and puree in processor with cinnamon and breast/formula milk until smooth.

Baby Cookbooks
These recipes come from a few of my favorite baby cookbooks. I can’t fully endorse any of these books because in each there are some suggestions that I personally don’t agree with for babies with Down syndrome or typical kids, but every one of them has an array of super recipes and food ideas for little ones.

Mommy Made, Home Cooking for a Healthy Baby & Toddler by Martha and David Kimmel (MM)

The Healthy Baby Meal Planner by Annabel Karmel (HB)

Wholesome Meals for Babies & Toddlers, Parragon Books (B&T)

They Get Messy

2010-04-27T20:31:00.005-04:00

Babies are notoriously messy eaters. They figure out right away that throwing, squishing, and spitting food is fun. It takes a while to get good hand/eye coordination going and as they practice there are plenty of misses resulting in food in the eyebrows, hair, ears... you name it. Then there is the lack of solid motor-planning which means cups and utensils often end up on the floor. Picking an object up does not require the same skills as putting it back down, and for some reason learning to place items back on the tray does not seem high on a baby’s priority list.

The first few times your baby ends up an absolute mess, it's kind of cute. You whip out the camera and preserve the memory for all time. Months upon months of glopped hair, soaked and stained shirts, and spills on the floor can become tedious. This same behavior in a restaurant or at a friend’s house could even be embarrassing. What’s a grown-up to do?

The Eating Arsenal

There’s no lack of bib styles out there, and after four kids I think I’ve tried them all. When I want to minimize the mess I go with the plastic full sleeve pocket bib that ties at the neck with a soft cotton collar bib underneath it for comfort as well as absorbing anything the dribbles down the neck. If your baby is not wearing short sleeves, roll up his sleeves before putting the bibs on.

Use simple hair clips to hold back your baby’s hair. You can do this for a boy too provided the macho police aren’t peeking in your windows during mealtime.

Position a spill mat under your baby’s highchair. We are using a Mimi the Sardine mat I picked up for half price on GreenBabyBargains.com. There are other brands that probably work just as well or even better.

Whenever possible (usually at lunchtime) I place a feeding mirror in front of Summer while she eats so that she can see herself eating. The speech therapist said this is supposed to help her visualize what she is doing. Make sure the mirror is out of reach, or that will end up on the floor too!

When I am planning on being right there the whole time, I use a place mat that we made for her that has a bowl/plate spot, utensil places, and a cup spot clearly marked on it. The mat does not adhere to the table so I have to be nearby to save the lunch bowl from ending up on the ceiling. The guides on the mat are to help her understand where to “set down” her eating tools. I only use this mat when I am specifically working with her on the concept of setting down her cup/utensils (instead of the usual Olympic shot-put method she has come to excel at.)

Keep a box of wipes or a damp cloth nearby so that you can wipe up spills as you go along. Keeping stray dribbles and chunks wiped up will keep them off the clothes, hair, and floor.

Consistent Caregiver Responses
After the first messy baby photo shoots, try to refrain from giving attention to messy eating. Don’t laugh or smile when your baby throws things, or blows raspberries with a mouth full of pureed peas. You don’t need to have a negative reaction either, a simple “No thank you, we don’t do that,” is fine.

Lessen Frustration by Teaching
Much of the mess is borne of frustration... baby wants more drink not more peaches and so the peaches go flying to the floor, etc. Teach your baby the signs for more and all done, and food and drink. Those words can make a big difference in how a meal goes. Your baby is going to let you know when she is done with her peas...she will spit the last ones out, or throw her spoon, or even swing her arms and knock the spoon out of your hands. If she knows the sign for all done, there is a good chance she’ll use it instead.

It is important for your baby to learn to wipe her mouth with a napkin or cloth. You want your baby to get used to this, to get in the habit of it. Children with Down syndrome often cannot feel little bits of food on their lips or cheeks/chin, and as they get older this could become a source of embarrassment or teasing. Teach your little one to always wipe her face after taking a couple bites of food.

As mentioned before, setting items down requires different skills than picking items up. Teach your child how to release his grip on his spoon or cup and to place it back on his tray. Many times babies throw their utensils simply because they haven’t the motor-plan for any other method of releasing them. You can teach “set down” by using a hand-over-hand motion with your baby and gently tapping the spoon/cup onto his tray so he can hear and feel as well as see where it goes.

A Little Help from You
Spend a couple minutes doing some mouth prep prior to feeding your baby. Use your z-vibe (or let your baby chew on his vibrating teether) for a minute to wake up his mouth muscles.

When you are doing the feeding, place the spoon in the center of your baby’s mouth with a little pressure so that his tongue forms a “bowl” around the spoon, and then let him close his mouth on the food before you remove the spoon. Don’t scrape the food off the spoon against the inside of his upper mouth as you remove the spoon. If he is self-feeding, you can use hand-over-hand motions to guide the spoon or cup appropriately.

When your baby is drinking from a cup or eating something of thin consistency, you can help him to keep in that last sip by placing your finger under his chin and supporting his mouth closure with some slight pressure. This will encourage him to swallow that last sip rather than let it rush out.

This Too Shall Pass

Learning to eat without a big mess is a process. Try not to get discouraged, and keep at it consistently... your little one will get there! One trick I use before each meal is to decide ahead of time how much mess I am willing to tolerate. From that decision stems my choices of how much to “bib up”, who gets to do the feeding, what she gets to eat, which cup we use, etc. For example if we are going out to eat, I make sure I have clips, a cover-all bib and neck bib, that I do the feeding and wiping, that she eats the least messy food on the menu, etc. If we are home and I am in a tolerant mood at lunchtime, she gets to practice self feeding with her own spoon and cup, and can eat a food that will stick to the utensil... I let her go at it on her own (and I even sneak pictures of her when she isn’t looking!)

Your Turn
Got a messy eater? Or maybe you have a feeding trick we need to know about? Tell us about it! Have you posted on this topic? Comment with the link and I will add it to the related posts.

Related Posts:
Homemade Monday: Feeding Kit

Picture Credits:
Sheridan from Genetically Enhanced
The Quail from The Tao of Tulips
Pudge from The Adventures of Pudge and Zippy

Look What I Found

2010-04-13T17:02:00.004-04:00

Every year we find an egg or two days, even weeks after Easter. Thank goodness we use plastic ones now. Well, just like at home, the same thing happened on the blog... I found two more eggs and they belong to a couple of beautiful boys.

Sutter
Wren, Rich and Big Brother Landon announce the arrival of Sutter.

Rowdy
Lance and Erika (and Grandma CiCi) announce the arrival of Rowdy.

A Basketful of Babies

2010-04-11T15:10:00.007-04:00

This month’s birth announcements are inspired by recent Easter egg hunting :-) Go visit their blogs to see these cuties and read some wonderful stories.

Camden
Billy and Tonya announce the arrival of Camden.

Claire
Melissa and Darren announce the arrival of Claire.

Macy
Barry and Kathy announce the arrival of Macy.

Mirabel
Emily and John announce the arrival of Mirabel.

Reid
Danielle & Tucker announce the arrival of Reid.

No blog yet, but here is a picture of this gorgeous boy.

If you would like our community to know about the arrival of a child 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.

Pooey Looey

2010-03-22T10:34:00.004-04:00

Warning: Ya’ll are going to think ds.mama is a bit nuts after this post. But I swear to you as crazy as it seems, it works. And successfully getting my 18 month old with Down syndrome ready to potty train is worth all your laughter and scorn :-)

Ah... potty training, a daunting task to accomplish with any child... Some people see potty training as an event, something you settle down and do one week. Not me... in our house potty training is a process that begins with elimination awareness and eventually ends two years or so later with saying bye bye to pull ups at bedtime.

During our last IFSP meeting, I mentioned that one of my goals over the next six months was to begin pre-potty training... Six shocked faces stared silently at me. Summer was 16 months old and her team was probably trying to figure out how to break it to me that she was nowhere near ready to start potty training.

Little did they know, I have been “pre-potty training” Summer since she was about six months old. I had learned some interesting things about potty training with my first few kids and I decided as each one came along to add to the “pre-potty training” repertoire all that I was noticing. I also had a friend who bravely did the EC method with her only child, and had relative success with it. I thought to myself, why not take the best of all this and see what happens.

Pre-potty training tricks
The very first step you can take, at any early age you choose, is to help your child connect elimination with a special sound. Notice how your infant child acts when he is poopin. There is likely going to be some grunting, wriggling, and a red face. Take the time to identify to your child what is happening. I sing a goofy made-up song to a warped version of the Sanford and Son theme song.... It goes something like, “A poo poo pooey, a pooey looey, a poo poo poo poo poo poo poo, a pooey looey...” Ahem, you get the idea (and yes, I do refrain in public).

If I have missed the event, I sing it when I am changing her diaper. The only time she hears this goofy song is when she is going or has gone poo. Over time, she has made the connection.

The next step is to help your baby associate going potty with a potty-chair in the bathroom. You can begin this step once your baby can sit on a chair or low bench on her own and can understand cause and effect and sequence. (An example of understanding sequence is that your child knows his routine and expects certain things to happen next. I usually start this step around 16-18 months old.)

Find a sturdy, comfy potty chair to keep in your bathroom. Make the sign for bathroom and then put her on the potty (clothes, diaper, and all) when she shows that she is getting busy. Sing the goofy poop song, and imitate her grunting. Yup, you read that right. Do some face to face grunting and then tell her it is her turn. She will imitate you back and you will be happily surprised at the results.

I do not start off doing this every day or for every elimination. When we have the time, and she seems very alert and is in a good mood, I will take her into the potty and let her practice. Sometimes if I am sure she hasn’t already started going, I will let her sit diaperless and actually go in the potty.

My pre-potty training goal is to teach her body to expect to go on the potty when she needs to poo. I have given her elimination awareness, a sign to use, and practice in the position. Next year, when she is ready to start actual potty training, she’ll already have these basics ingrained.

Your Turn
Ok moms who have been there, done that... do tell. How and when did you start potty training, and what worked best for your child?

From Theory to Practice :-)

Tausha: No Way!!! That did not just happen!!

Oh Kelvin, Guess What?

2010-03-20T18:29:00.004-04:00

Your mom (Madi) and dad (Brady) entered the Winter Giveaway and won! So you are getting some goodies in the mail, just as soon as one of your parents emails me to tell me where to send them.

Supplements—DHA & EPA

2010-03-15T11:22:00.004-04:00

What is it?
Docosahexaenoic acid (DHA) is an omega-3 essential fatty acid derived from fish oil. Eicosapentaenoic acid (EPA) is another omega-3 fatty acid and it is often found in products that contain DHA.

Why would I want to give it to my child?
DHA is required in high levels by the brain and retina as an essential nutrient to provide for optimal neuronal functioning (learning ability, mental development) and visual acuity.

Studies have been done on children with autism and with other developmental differences, and the results showed that after 3 months of taking DHA & EPA, there was a 6 month improvement in reading and spelling levels, as well as significant behavioral improvements.

When I asked our developmental pediatrician about omega-3 oil, he said that there is proof that it has positive impact on brain development in infants and children. I had already been using it for a while but this was reassuring to hear.

Where can I get it?
Moms can start introducing omega-3 during pregnancy by taking fish oil supplements. Then later your baby can continue to receive DHA & EPA through your breast milk. Some formulas are enhanced with DHA, (but as far as I know, only Baby’s Only by Nature’s One derives the DHA from eggs. More on this topic under side effects.) Omega-3s can also be found in enhanced milk as well as in enhanced eggs (I wonder what those chickies eat).

The easiest way to get it, and one of the safest, is through Nordic Naturals Children's DHA which has the highest omega-3 level of any cod liver oil. Nordic Naturals products have consistently high standards and test under the maximum allowances for toxins and heavy metals.

There is also a plant derived omega-3 fatty acid, a-linolenic acid (ALA), but the metabolic conversion of ALA to DHA/EPA (combined) by metabolism is very limited in humans and certain forms of ALA have risks associated with taking them.

What are the side effects and risks?
One of the positive side affects of taking omega-3 oil is that it helps to keep your baby from becoming constipated. Like some other oils, it helps to keep things moving along.

The Nordic Naturals website lists possible repeating (or spitting up) as a side effect. It says if this happens it could be because, “your body may not be manufacturing enough lipase, the digestive enzyme our bodies make to digest fats and oils. If you haven't ingested fish oils for a long time, it might take a week or so for your body to adjust and make more of this enzyme.”

Aside from that, I have found no other negative feedback associated with the Nordic Naturals omega-3 fatty acids, DHA & EPA.

Mercury and other toxins are a risk associated with some brands of omega-3 oils so do brand research before you purchase an omega-3 supplement.

Several sites mention dangers in the processing of ALA oils, Mortierella alpina oil and Crypthecodinium cohnii oil (sometimes listed as M. alpina oil and C. cohnii oil). These oils are extracted from fermented fungus and algae with a neurotoxic chemical solvent. The C. cohnii oil (algae) & M. alpina oil (fungus) used in many infant formulas are treated with hexane solvent, acid, and bleach. Some infants have experienced serious adverse reactions to these additives. Hmm, I wonder why.

Based on my research I did when choosing a formula and supplements, I found that Baby’s Only formula and Nordic Naturals omega-3 oil were the safest ways to get DHA & EPA into my babies. All of my children are still taking one or both of these products.

Your Turn
Is your child taking some form of DHA supplement? If so, what are you using and what results are you seeing if any?

Sources
DHA/EPA Omega-3 Institute
Omega-3 Fish Oil Blog
Nordic Naturals
The Cornucopia Institute

EI—Who, What, When, and Why

2010-03-08T10:58:00.005-05:00

The purpose of Early Intervention (EI) is to teach us how to give our little ones the extra support they may need to develop effective motor planning and skills.

EI starts off with the assignment of an EI service coordinator and an initial evaluation to figure out what therapeutical services will be beneficial for your child. During the evaluation you will be asked what things are important to you and your family concerning your child. Based on this evaluation and your input, a team of therapists is pulled together to help you and your child reach the goals you have set out.

The goals are written up for a six month period in a document called an Individualized Family Service Plan (IFSP). The IFSP is a living document that gets updated every six months (and sometimes sooner depending on any special circumstances) to reflect your families on-going needs and goals.

It is important to know three things about EI therapists... first of all, they work for you and your child, and you get to decide if the relationship is working out. If you are uncomfortable with a therapist for any reason at all, you can ask your EI service coordinator to switch the provider. Second, not all EI therapists have experience working with children with Down syndrome. And third, there are several concentrations within specific therapy fields. For example, some occupational therapists may have a strong background in sensory, while others may have more experience with self-care skills such as feeding and dressing.

When you are determining who will be working with your child, you should make sure the provider has experience with children with Down syndrome, and a level of expertise in the areas that are specific to your goals. In other words, not any old therapist will do.

Almost all infants with Down syndrome can benefit from working with a physical therapist (PT) and a speech and language pathologist (SLP) with a background in newborn feeding and oral motor skill development. Some infants may benefit from spending time with an occupational therapist (OT) who can provide a sensory program that includes deep pressure and brushing. Between 8 to 10 months of age, you probably should start pushing for a special instruction teacher. This educator will use play therapy to begin teaching your baby sign language, concepts such as in/out and up/down, as well as choice-making and other cognitive skills.

When EI is working right, you will find that you have a team of encouraging therapists who are:
—showing you at a detailed level all of the amazing developments your baby is achieving.
—training your child’s neurological pathways in effective motor activity and motor planning.
—teaching you how you can incorporate basic skill development into your baby’s everyday routines.
—teaching you how to provide your child with motor training, and sensory and cognitive experiences and that will help him develop constructive life skills.

EI is not about pushing your baby to the next big milestone, it is not about comparing your child to others, and it is not about making you feel inadequate as a parent. If you are experiencing those things, it may be time to consider some changes to your child’s team.

Your Turn
When did you start EI and what services did you start off with? What have been the pros and cons of EI for your family?

A Bevy of Boy Beauties

2010-02-25T12:38:00.013-05:00

Remember William from last month’s birth announcements? Well, his mom Tracy was kind enough to send us a picture of him. Isn’t he adorable?

Andrew
Nykki and Amy have been blessed with a son, Andrew. Check out Nykki’s blog, Past The Apple Orchard to see lots of pictures of little “Roo”.

Curtis
With great joy, Josh and Berit announce the birth of their son, Curtis. BabyBee can be found hanging out and looking darling on the Beary Bee blog.

Jack
Angi and John are delighted to introduce their first child, Jack. He is the star of the show over at Life in Color.

John
Meg and Dan welcome a beautiful new son, John. He joins brother Danny and sisters Maggie and Emily. He's not on the Web yet, but mom sent a picture so that we can oooh and ahhh over him anyway.

Owen
Andy and Ashley are honored to announce the birth of their first child, Owen. You can let Owen completely charm you at My Little Peanut.

If you would like our community to know about the arrival of a child 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.

Stand Up

2010-02-17T21:40:00.001-05:00

As a new parent to a baby with Down syndrome you learn fairly quickly that the world isn’t always the kindest place to raise kids. There are lots of things out there that hurt our feelings, and our children’s sense of worth.

This brings out the mama and papa bears in us and we become advocates and educators. We want the whole world to see our precious children through our loving eyes. That is why so many of us blog and make use of other social media.

And right now we are big news. We are working hard to eradicate painful insults by letting people know that it hurts and that it is unacceptable, and immature. The culture around us is rumbling with fallout from Rahm Emanuel’s highly publicized indiscretion. It is the right time to stand up and be heard.

Please head over to Oz Squad and sign the letter written to educate Sarah Palin on the best way to fight for our children. She has the speaking platform we need and we have the voices she can use.

Oral Motor Myths

2010-02-08T17:43:00.005-05:00

Myths... a high-arched narrow palatal vault (that would be the “roof” of the mouth), tongue protrusion, mild to moderate conductive hearing loss, chronic upper respiratory infections, mouth breathing, habitual open mouth posture, and the impression that a child's tongue is too big for his mouth... all myths.

Speech and language pathology expert, Sara Rosenfeld-Johnson published an article back in 1997 titled, The Oral Motor Myths of Down Syndrome. In the article she lists seven structural/functional disorders (the myths above) that she feels can be prevented.

In other words, infants with Down syndrome are not born with these oral motor differences; instead they develop them based on inappropriate therapeutic approaches to feeding difficulties present at birth due to low tone.

Rosenfeld-Johnson writes, “Orally, these children look pretty much like any other infant with the exception that they have a weak suckle. This critical observation draws us to the connection between feeding muscles and muscles of speech. In quick order, a cascade of events unfolds for these babies with weak suckle.”

The events she refers to begin with making it as easy as possible for the newborn to eat which sets in motion a downward spiral of circumstances that lead to the development of the above-named oral motor irregularities.

There is an assumption in the medical community that babies with Down syndrome do not eat well, and that they inevitably demonstrate all or most of the seven structural/functional disorders seen in many people who have Down syndrome. Because successful nutritional intake is one of the primary goals that needs to be reached ASAP with a newborn, nurses and doctors often push solutions that may be in direct conflict with the best oral-motor therapy techniques for improving a baby’s oral motor skills.

I can tell you from experience that this is true. I had a baby with severe heart defects that could not eat enough on her own to survive. She could not successfully nurse, nor would she drink well from a bottle. I did not know about Sara Rosenfeld-Johnson’s theories. If I had known, I would have used them as support for my stubborn ideas about feeding and continuous oral motor stimulation.

So what are SRJ’s recommendations?
1. When a baby is being fed, his mouth must always be lower than his ears.

2. A breastfeeding mom should stimulate the mammary glands while her baby is nursing to increase milk flow. Over time, as the baby’s strength increases, gland stim will no longer be necessary.

3. A bottle-feeding parent should use bottles with disposable liners. This allows the air to be pushed out of the bottle causing a vacuum and making it possible to feed in a position where the bottle nipple is presented from below the mouth. The caregiver can push gently against the liner if necessary to facilitate the flow. Rosenfeld-Johnson explains, “This position encourages a slight chin tuck and the child draws the milk up the nipple predominately with tongue retraction. This position and retractive action prevents milk from flowing freely into the child's mouth. The child no longer needs strong tongue protrusion to enable swallowing. It is also important not to make the hole in the nipple larger.”

The article clearly explains how feeding approaches can alter your baby’s future both positively and negatively, making it a valuable read.

Your Turn
Can following these fairly simple suggestions have a significant effect on your baby’s future oral motor structural and functional formation? My child’s oral motor development has been consistent with what was presented in the article, so based on that (and the fact that the points in the article made sense) I would say give it a try.

What about you? Did you by chance feed from birth according to SRJ’s method? Did you not? Does your child exhibit any of the mythical characteristics, or not?

Heart Scar

2010-02-01T09:50:00.006-05:00

One of the most frightening things parents may ever face is surgery on their baby. It is said that approximately 45% of babies with Down syndrome are born with a congenital heart defect. Many of these defects require corrective surgery. Before you read anything else, know that heart surgery today has a 95-99% survival rate. I can’t minimize the fear and risks involved but it is important to know that these are very common surgeries performed by excellent, experienced pediatric heart surgeons.

The most common defect is a hole in the heart between the two upper and/or lower chambers which allows oxygenated blood to mix with blood that is returning into the heart. These types of defects are called AV Canal (endocardial cushion defect), VSD, and the less common ASD.

The hole in the heart types of defects usually lead to open heart surgery when the baby has gained some weight and grown a bit. The timing of surgery is often decided by balancing weight gain versus the slide toward congestive heart failure (CHF). CHF is the medical term for saying that the heart cannot continue to do its job without the support of medication (lasix, digoxin, etc.) and perhaps oxygen.

While I am talking about such scary stuff, I will also mention there are more rare heart defects that require surgery before a baby can leave the NICU. A coarctation of the aorta is one such defect.

A baby with a congenital heart defect will be followed by a pediatric cardiologist. She will get echocardiograms (a fancy heart ultrasound) and heart x-rays. She might also get an ECG (the test where they stick the wires on her chest and measure the heart’s electrical activity), or even perhaps a heart MRI. All of this information is shared with a pediatric heart surgeon and he will use it to determine the appropriate surgical fix.

When I first heard (at 30 weeks gestation) that my baby would need heart surgery for an AV Canal defect, I was terrified. The sick-to-my-stomach kind of scared. And I had visions of an angry red zipper scar running from the bottom of her neck to her abdomen. When at three weeks old they told me she had a coarctation of the aorta that required immediate surgery, you could have knocked me over with a single breath.

So yeah, I won’t minimize it. Heart surgery is scary for us parents. The first look at recovery is daunting. There are multiple wires and tubes attached, each serving a unique purpose. But, your baby is feeling no pain and she is being cared for by two or more cardiac nurses specially trained to aid in her recovery. You however may need a stiff drink.

The recovery period for a baby is amazingly quick. In most cases, you will be home within two weeks of surgery. Six weeks later, you will stare at your strong happy baby and wonder if it ever really happened. And there it will be, a thin line a few inches long drawn down her chest, the heart scar. The badge of courage and strength, that if kept out of the sun, will nearly fade away over the next few years.

Your Turn
If your baby has a congenital heart defect that requires surgical repair, you may want to take some time to visit the blogs listed under the Sweethearts & Fighters blogroll in the left column. The path is well worn and you may find encouragement and peace as you read through the stories of those who have walked before you.

More Sweet Babies

2010-01-24T22:37:00.011-05:00

Our little cutie-pies just keep coming!

William's mom, Tracy, isn't blogging yet but maybe we can coax her into sharing a photo with us...

Rozie is just the prettiest thing ever! I'm warning you though, don't visit if you are hungry because her mommy has some of the yummiest looking treats on her blog and you could blow your diet just coveting them.

This handsome boy made an early entrance, beating his due date by ten weeks. He is a strong fighter with great big giant blue eyes.

LC Boom Boom, or rather Princess Pudge, has an adorable new little brother. His mom, Ch, has one of the funniest blogs out here. So go check him out and enjoy.

If you would like our community to know about the arrival of a child 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.

Communication 101

2010-01-20T17:12:00.009-05:00

Parents look forward to hearing that first word... “dada” or perhaps “mama”. And when it comes, we are thrilled because we know that our child has connected words to objects, and that the rest of our spoken language is just a matter of time. But it is important to remember that speech is just one component of communication, and usually the last piece to be mastered.

The first communications between mom and baby begin at birth with cries, rooting, facial expressions, and eye contact (and maybe even before birth since we know that a newborn can recognize his mother's voice). While these first methods of communication come naturally, for babies with Down syndrome the presentation might be fainter or appear later than expected. For example, the smile is one of the first communication signals a baby gives us and it is important to realize that babies with Ds might smile later, less frequently, and less boldly than other children. The difference between a parent’s expectations and a baby’s skills can disrupt the mom’s ability to interpret her baby’s signals, making it harder for a harmonious relationship to develop.

What’s a Mom To Do
Like we do with all new love relationships, spend time studying your baby’s expressions and movements. Become sensitive to whatever communiques your baby is giving and respond to them accordingly with both words and gestures. It won’t be long before your baby figures out that he is the cause of these positive results. And so begins what we call “communicative intent”, using communication with the intention of affecting the environment.

Irene Johansson, author of “Language Development in Children with Special Needs”, suggests tactile intervention in the form of newborn massage several times a day. This provides the opportunity for the caregiver to communicate with the baby while the baby is experiencing a physical stimulation that heightens his awareness.

Requesting/Protesting
It is imperative to encourage a baby’s desire to communicate. The best way to do this is to be very responsive to him when he initiates any of the natural communiques of requesting and protesting. Don’t let him cry it out or make him wait if you can help it. Reward him with a smile, caress, or song whenever he is looking at you, kicking his feet or reaching out. Don’t worry about spoiling your baby by always giving quick and direct feedback. You cannot spoil a newborn with too much responsiveness or attention. And patience is a virtue that can be practiced after your child learns that communication is power.

Gazing
Babies learn a lot about communicating by watching you do it. Research has shown that babies are predisposed to face watching. You can encourage your baby to look at you by keeping him close to eye-level in a carrier, or in a babyseat that is up on a table. If your baby doesn’t have the strength or coordination to watch you, hold her in a position that gives good support to her head and neck. While you are gazing at each other imitate any facial movements she makes, or stimulate her by making noises and expressions. Babies with Ds initiate less often, so take the lead and start a “conversation” whenever you get the chance.

Turn taking
Another important part of communicating is taking turns. You can work on this with your baby by pausing while speaking to him, as if you were listening to his response. You can also practice turn taking by shaking a rattle and then helping your baby to shake his rattle, back and forth several times. This builds the expectation of response, teaching your baby that communication results in response, or rather having your needs and wants met in some way.

Performative Communication
Performative communication is defined as the “speaker’s” deliberate, conscious, and goal-oriented use of communication (speech, signing, picture cards, body language, etc.)(Snyder 1978). Irene Johansson’s book is a week by week program for providing your baby with communication intervention that begins at birth. She makes a great case for why you would want to use her model (which incorporates massage, structured sounds, movement, and more) to help your baby develop strong communication skills.

I did not have this book when Summer was a newborn, and it wouldn’t have mattered because I do not have the discipline to follow such a structured program. However, that said, I have used some of the suggested program for the last year, and believe that for a caregiver who can do it, there would be worthwhile benefit.

Your Turn
Have you posted about a communication topic? Let me know and I will link to you.

To Love Endlessly: Communication
Face the Sunshine: Sign on...

Picture credit: Marissa from To Love Endlessly
John Michael from Monkey Musings

Toothfairy Gone Mad

2010-01-07T10:24:00.004-05:00

Since she comes to collect precious baby teeth when they fall out, I am guessing the toothfairy has something to do with making those little tooth buds while babies are cooking in utero. Surely the fairy dust she sprinkles on the gums of babies with Down syndrome must be quite magical because it causes some interesting tooth development.

Babies with Down syndrome often have their teeth come in late (nursing mothers stand up and cheer!) You can expect your baby’s teeth to arrive in any old order they choose, including perhaps not at all for some teeth. (Uh, maybe that fairy got a little too wild with her wand...) And, some teeth may be irregular... as in extra sharp, big, small, or even funky shaped.

What does all this mean (aside from that the toothfairy needs to stop partaking of fairy dust before going to work)? Not much for the under 10 months crowd because tooth eruption tends to be delayed in children with Ds. Babies without teeth can still eat anything that can be mashed by powerful gums and that includes soft well-cooked meats. Your baby can still hurt you by biting you with her gums (nursing mothers can stop cheering now.)

Once your baby’s teeth start arriving, sometimes molars first as was the case with Summer, you should brush them after meals and bottles. (Uh huh, fun fun.) There are lots of baby toothbrushes out there to choose from. Our pediatric dentist recommends the Mam Training toothbrush ($5.99 at Amazon.com as part of a set) and I find it easy to use. It has a long handle and a rounded brush on one end, as well as a gum massager on the other. And don’t forget to floss your baby’s teeth (more fun). I prefer to use floss rather than the fancy new disposable flossers that are out there mainly because it is easier to maneuver around with it in a wriggly baby’s mouth. Good luck finding kid-friendly flavored floss at the drugstore... I score the bubble gum variety when we take the older kids to the dentist. However, since babies with Ds tend to enjoy strong flavors, cinnamon or mint probably works just as well.

There is really no pressing reason to visit a dentist prior to age three (unless some teeth do not come in) but you may want to start shopping for a pediatric dentist who has experience with children who have Ds. We visited a dentist at 15 months because there were signs that teeth might be missing. The dentist confirmed this to be true and suggested X-rays at age two. (We won’t need to do that because she got them for Christmas.) So aside from blog research, some incorrect dental conclusions, and a fancy toothbrush, I can’t think of any good reason to go back before age 3... unless of course, that the toothfairy comes back around and does something crazy with her wand.

Your Turn
While you are here, please take the tooth poll located over in the upper left column. If you leave me a comment saying that you participated in the poll (or that you would have if your baby already had that first tooth :-), you will be entered into the Winter Giveaway. The winner will receive a First Years Star Teether, a NUK straw cup, and bubblegum flavored dental floss. (You are invited to take the poll even if you aren’t interested in the giveaway.)

More 2009 Babies

2010-01-02T21:24:00.004-05:00

I know you guys think I have been distracted by eggnog and mounds of Brie cheese... too distracted to get out the rest of the 2009 birth announcements... but I swear it isn’t so. I actually have been suffering (for the last month) through the worst computer quagmire ever. For now, everything is behaving so I will present to you a bunch of new darlings to visit and oooh & aaah over.

Prayer is Always Free

Schye Family

Living Life with E's

Cindy the Artist

The Baby Who Chose Us

If you would like our community to know about the arrival of a child 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.

Somewhere in Kazakhstan...

2009-12-18T09:02:00.004-05:00

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.

That’s What I Like About You

2009-12-08T09:45:00.006-05:00

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. She 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
Random.org picked Brandie and Goldie from Livin for the Love. Congratulations! Email me and I will get your package out right away :-)

Dear Santa Claus,

2009-11-30T14:49:00.017-05:00

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.) 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

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

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

Who 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

Many 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

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

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

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. $11.99 at Target

Fisher Price—Stack 'n Surprise Blocks Songs 'n Smiles Sillytown

Pop 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

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

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 :-)

Peek-a-Boo, I See You

2009-11-23T22:11:00.013-05:00

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.

5. 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)

Calling All Advocates (That’s You!)

2009-11-11T16:01:00.002-05:00

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 :-)

The Stage One Oral Toolkit

2009-11-03T22:17:00.006-05:00

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.

Shake Your Bootie

2009-11-02T07:59:00.003-05:00

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!

He's Got the Look

2009-10-28T21:03:00.002-04:00

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.

Everybody Should Do It

2009-10-22T11:43:00.003-04:00

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 :-)

He’s Hot, He’s Cold, Hot, Cold...

2009-10-18T12:29:00.007-04:00

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.

Surprise

2009-10-14T18:01:00.002-04:00

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.

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

2009-10-12T20:42:00.005-04:00

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.

Sweet Baby Girl

2009-10-11T18:11:00.004-04:00

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.

The Best Part—Fall Giveaway

2009-10-06T08:36:00.005-04:00

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.

Do You Live in Michigan?

2009-10-02T21:22:00.004-04:00

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?

Facebook Blunders

2009-10-01T20:51:00.004-04:00

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.

One Year Later

2009-09-28T06:00:00.001-04:00

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.

My Inspiration

2009-09-22T15:39:00.003-04:00

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.

Umbilical Cord Idiosyncracies

2009-09-11T16:23:00.004-04:00

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.

Baby Pictures, Please

2009-09-09T20:54:00.002-04:00

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.

Mama Bear, Mama Bear, What Do You See?

2009-09-07T11:47:00.010-04:00

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

Only Three Days Left

2009-08-29T20:22:00.000-04:00

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.

It’s Rocking Around Here

2009-08-26T22:46:00.016-04:00

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. Kristófer, 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.

That Rowdy Tongue

2009-08-19T13:18:00.006-04:00

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 beyondplay.com 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.

Does She Really Look Like Me?

2009-08-16T20:09:00.003-04:00

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.

Kaitlyn Has Arrived

2009-08-13T21:00:00.003-04:00

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.

Good Intentions - Planning for the Future - Part 1

2009-08-06T23:33:00.002-04:00

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?

Prenatal Diagnosis of Down Syndrome?

2009-08-02T12:21:00.007-04:00

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

Brand New Blog

2009-08-01T14:51:00.003-04:00

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.

Seven Things I Love

2009-07-31T14:41:00.002-04:00

Ok, ds.mama was tagged by rickismom to write about seven things I love. I confess, I usually complete these sorts of assignments in comment boxes rather than posts but this time is different because there is something on my list you need to know about.

1. You. That’s right friend, you. I am so happy to be a part of a community of people who share their hearts, their hurts and their triumphs. A group who advocates, educates, and cultivates. A community that welcomes newcomers with open arms and goes faithfully to visit the blogs of newborns, or those who are ill. I love all you ds.mamas and ds.papas for what you do and I am proud of you.

2. The French language. Pierre can whisper in my ear all day and night ;-)

3. My babies.

4. Their father.

5. A really powerful summer thunderstorm at dusk.

6. God.

7. Eating gourmet food that I didn’t have to cook.

Your Turn
Tell us what you love.

Baby Boy Bounty

2009-07-30T22:36:00.005-04:00

Big brothers J and Red are happy to tell you that there is a new little brother at their house. Be sure to make your way over to their mom's blog to see him and wish them all well.

If you would like our community to know about the arrival of a child 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.

It's Raining Boys

2009-07-29T23:16:00.005-04:00

Brady and Madi proudly announce the birth of their son, Kelvin Kyler Love. What a perfect last name for this sweetie. Stop in and give this new little guy a virtual hug.

If you would like our community to know about the arrival of a child 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.

Birth Announcement

2009-07-28T23:44:00.005-04:00

The Stevenson family is proud to announce the birth of their first child, Beau Thomas. Beau was born via c-section at 29 weeks. He is currently in the NICU but doing great and shooting for an early August parole. Stop by their blog to check out this cutie and give them a warm welcome.

Thank you Rebecca for the sweet 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.

Only One Week Left

2009-07-25T10:23:00.001-04:00

There is just one more week left in July... one week left to enter DSNM’s summer giveaway. Why don’t you take a minute right now to tell a wondering mom-to-be what having a child with Down syndrome is really like.

First Library Additions

2009-07-21T22:47:00.006-04:00

I love books. I spend a lot of time in the bookstore and at Amazon. My kids love books too and my baby with Down syndrome is no exception. Right in the beginning I realized that I needed to be more intentional with my book purchases for her. Suddenly I could see how overwhelming the pictures were, how senseless the content was, how difficult to manage the tiny pop up windows were...

When infants can’t understand the words yet and have no schema for the pictures, any old book will not do. Here are some ideas of what to look for in a good baby book:

--A single image on a page without other distracting imagery. Pictures with high contrast, particularly black and whites, are the best.
--Pictures of baby faces, recognizable body parts, or objects/actions common to a baby’s day. Books that show babies doing things.
--Books that isolate colors, that have textures to touch, or that teach concepts like object permanence.
--Books with good cadence content (songs or rhythmic language) and books with word repetition.

Lots of times a book will meet one or more of those qualifications but have too much detracting from it...too many images on a page, blended colors, and things you don’t want to show your baby (like lots of unhealthy treat foods).

The following books make good first reads (and second, third, fourth, etc., because you know you’re gonna end up reading those same favorites over and over and over.)

Recommendations for Stage 1 Books

Brown Bear—Eric Carle 7.95  One bright picture per page (until the end) and simple repetitive language. I read this book out-of-synch so that when I am saying “I see the animal and its color” I am on the page with that animal. I think this is less confusing for a new baby.

Today is Monday—Eric Carle 6.99  Wonderful high contrast colored pictures and repetitive language. Babies love to stare at the pages in this book.

Peek-a-who—Nina Laden 6.95  High color contrast pictures, simple rhyming language, and object-permanence teaching peek-a-boo pages. Check out Ria’s in-depth review of this book.

baby! talk!—Penny Gentieu 1.29 (used)  This is one of my all time favorites. Its full of babies doing baby stuff like playing “So big”, “Peek-a-boo”, and “Patty-cake”. Each left page has a single baby doing something and each right page has a group of babies doing it. There are lots of talking points (Look at that baby drink her bottle) and lots of baby games to do. It is out of print but buy it used or borrow it from the library, its worth it.

Moo Ba La La La—Sandra Boynton 5.99  Classic Boynton when she was great. I gave our copy away in PICU one day and ended up replacing it with the super-sized version. It is just a fun, rhyming book that babies seem to really enjoy.

Rainbow Colors Peekaboo—DK Publishing 6.99  This is a great book that has simple pictures, isolated colors, textures for touching, and fold-out pages for teaching peek-a-boo. It is part of a peekaboo series and not all of these books by DK meet the qualifications of a good baby book. Another good one is Farm Peekaboo.

Hush Little Baby—Marla Frazee 7.00  My favorite lullaby. The pictures aren’t great for a baby but the words are the originals. It makes a nice bedtime song.

Look at Baby’s House—Peter Linenthal 6.99  Black and white delight! This book is only black and white and has simple content about a baby’s day. Babies are captivated by the pictures.

I Can, Can You?—Marjorie W. Pitzer 8.76  This book has pictures of young children with Down syndrome doing everyday activities. It is a little “old” for a newborn but it is important for your baby to see children in books who resemble her.

Little Angel—Sandra Magsamen 7.99  A baby should hear this (poem) story everyday. It is a beautiful message about being wanted and loved. (Heck somebody please read this to me at bedtime!) The pictures are just ok, the finger puppet is cute, but it's the words that make this a must have book.

(Not pictured) Baby Talk—DK Publishing 4.99  A simple book of babies doing everyday things like eating or sleeping. Each left page has a single picture of a baby and each right is a colored fold out that hides the same baby doing what the words say on the fold out. It teaches object permanence (can’t get enough of that) and feelings.

Your Turn
What was your baby’s favorite first story? Got a baby book review for us?

Finger Foods

2009-07-17T13:31:00.008-04:00

Letting your baby feed himself finger foods is a great way to give him a chance to practice fine motor hand dexterity as well as tongue and jaw control. But what serves as a good choice of finger foods to offer your baby? Below is my list of favorites that meet basic early foods guidelines.

My 10 Favorite Finger Foods
Puffs or Cheerios (I prefer Happy Baby Puffs and Cascadian Farms Os)
Scrambled eggs (yolks at six months, whole eggs at one year)
Steamed broccoli or cauliflower
Small chunks of muffin or breakfast bread, such as banana bread
Well-cooked pasta pieces
Pancake chunks (no butter or syrup)
Red beans and rice (spice it up for high-flavor)
Chopped up Egg Mini-Balls (from Super Baby Food by Ruth Yaron, whole eggs at one year)
Chunks of soft-breaded fish sticks (fish at one year)
Small chunks of cheese quesadillas (cheese at nine months)

When it comes to food, I am a proponent of starting ealier rather than later when food habits and expectations have begun to take hold. You, your pediatrician and perhaps speech or OT will have to determine when your baby is ready to self-feed. However, this will probably happen when your baby can sit well-supported in a feeding seat with a tray and is ready to move on to the munching phase (beginning to mash food in his mouth by flattening and spreading his tongue while moving his jaw up and down. The DS Nutrition Handbook, pg. 10). Your baby does not need to have teeth to enjoy finger foods. If you notice that your baby shows interest in what you are eating (watches you eat, leans toward you as you eat, sticks his tongue out as you eat), he is probably ready to try self-feeding.

Finger Food Guidelines
Food pieces should be about the size of a Cheerio or large pea. The food should be able to be broken down easily by saliva and gumming. Only place a couple pieces of food at a time on the tray to avoid overstuffing (which can lead to choking.) It is a good idea to use a plastic bib with a pocket to catch the misses so that you can dig them out and give your little one a second chance with them.

Feeding No Nos... Never leave your baby unattended while he is self-feeding. Try to avoid foods that are wet with straight edges (for example, steamed carrot chunks or chopped banana) as they will stick to the tray setting your little one up for frustration. Skip the choking hazards... hot dogs, peanuts, popcorn, chips, seeds, whole grapes, whole olives, corn niblets, cherries, and peanut butter.

Choking
If your baby begins to choke, do not try to dig the food out of his mouth. This can cause it to be jammed further in his throat. Pick him up and turn him over with his head lower than his torso. Give him a firm thwack with your palm on his back right between his shoulder blades to expel the food. If you cannot dislodge the food right away, call 911 for help.

Recipes
Red Beans and Rice
4-5 Cups Cooked Rice
Olive Oil, Salt, Pepper
1 Small Onion, chopped and browned
2 Garlic Cloves
2-3 Tablespoons Bearitos Chili Spice
1 Can Pinto Beans, drained
In a large skillet, brown chopped onion in olive oil on medium heat. Add garlic and cook two minutes longer. Add beans, chili spice, and salt and pepper to taste. When heated through, add the cooked rice and mix well. Splash with a dash of olive oil. This can be served with shredded cheddar on top. Cool and put a scoop on baby’s tray.

Cheese Quesadillas
2 Flour Tortillas
1/3 Shredded Cheddar Cheese
Place tortilla on a greased baking sheet. Top with cheese and remaining tortilla. Broil 4 in. from the heat for 3 minutes on each side or until golden brown. Cool and cut into tiny pieces for baby.

Egg Mini-Balls
3 hard-boiled eggs, mashed
1/2 cup cooked brown rice
4 tablespoons mayonnaise
1 teaspoon finely diced onion
1/2 cup crushed cornflakes
Mix first 4 ingredients and shape into mini-balls. Roll in cornflakes to coat. Bake in preheated 425 degree oven on greased cookie sheet for 10-15 minutes until browned. Cool and chop up into chunks for baby.

Your Turn
What was your baby’s favorite finger food? Does your baby like self-feeding?

There's a New Prince in Town

2009-07-16T19:53:00.000-04:00

Make sure you go check out a new little man on his momma's new blog, The Wonder of Wysdom. Wysdom has already proven to be quite the fighter having undergone OHS in May. His mom is studying to be a Holistic Nutritionist and I look forward to the information she will sharing with us all.

For David and His Disciples

2009-07-12T18:05:00.003-04:00

I am a parent who chose to bring a child with Down syndrome into our family and into the world you and I share. I have read through your posts and comment threads and several like them and would like to respond to some of the ideas therein.

Technology and tests do not prevent Down syndrome. Ds happens at conception and at some point later, a test result shatters a woman’s heart. Why some women continue their pregnancies and carry their babies to term may be incomprehensible to you, but it isn’t to me.

I did not have my children in order to have my own intelligence and beauty reflected back at me. I do not plan to live vicariously through my children, nor do I need them to support me in my old age. I am not afraid of developmental delays, or of someone whose beauty is different than what our culture is programmed to desire. I don’t suffer from Münchausen syndrome, I don’t feel self-important, nor am I a religious masochist.

I chose to have children so that I could enjoy their company. All three of my children are a pleasure to be with, so they have all fulfilled my “parental needs.”

I am sorry if it bothers you that I didn’t see fit to kill my baby once I learned that the cells making up those little feet kicking at my insides all had an extra 21st chromosome.

I am also sorry if you are angry that some of your tax dollars are spent on giving my child with Ds the extra boost she needs to develop to her full potential (which is way higher than Rob seems to understand) There are lots of things I don’t like my tax dollars spent on either, but I accept that. I can give up a few Mocha Lattes to feed some 16 year old high-school drop-out’s perfectly developed welfare baby. Because, well you know, some unplanned pregnancies do result in live births.

My daughter with Down syndrome doesn’t suffer at all. And the only upcoming suffering she will probably face in her life is the ridicule and rejection of people like you. Might she get sick at some point? Yes, and you might too.

David, before you continue your campaign against parents letting their developmentally delayed children live, you should spend some time learning more about them. You seem to be convinced that only a specific set of “desirable” human traits can result in a “healthy, successful, productive” life. Having Down syndrome and being developmentally delayed doesn’t make you unhealthy, unsuccessful, or unproductive. Are some people with Ds unhealthy? Yes, they are. Are lots of people without Ds unhealthy, unsuccessful, and unproductive? Yes, they are.

Read this book, Common Threads: Celebrating Life with Down Syndrome, and see if knowledge about real people with Ds (lots of adults) doesn’t soften your stance just a bit.

E plus I times X equals GUILT

2009-07-09T00:04:00.002-04:00

Early Intervention therapists come to our homes weekly, bi-weekly, or even just monthly. They train our babies to develop their gross, fine, oral motor, and cognitive skills by conditioning their brains to learn movement patterns, sensations, and organization. They also teach us how to perform these specialized therapy activities and recommend that we do them on a consistent basis.

Daily... I am supposed to do oral motor stimulation prior to each meal and to fit in a 20 minute physical therapy session. I am also supposed to expose my child to classical music and signing throughout the day. Weekly... I am supposed to carry over what we do in pool therapy and to practice several activities suggested by a special education therapist and a teacher of the visually impaired.

I admit, I am already overwhelmed with multiple children, a job, a husband, a couple of blogs, a house to keep up, two moms groups, church... etc. And, some days, ok, maybe lots of days, I could easily not do any of the recommended EI activities. When this happens, guilt sets in and I envision my daughter never becoming independent because I didn’t find time to roll her around on a mat everyday. Oh, yes, I beat myself up for being an EI slacker mom.

Once the guilt takes hold, I start to wonder if EI even matters at all. Wouldn’t it be easier to just free myself of this cruddy feeling by axing EI altogether? What good is a bi-weekly 20-minute splish-splash in a pool anyway? Does it really make a difference if I stick my fingers in my daughter’s mouth for five minutes before lunch? Am I wasting our therapists’ time and our state’s money?

I confessed my shortcomings and fears to our physical therapist. She reiterated that, “It matters. Even if it is sporadic, it makes a difference.” Ok, so it’s worth it but how do we rid ourselves of the guilt and manage to get in more therapy?

Get Some Helpers
Enlist the help of siblings or other family members. A brother or sister as young as five can be taught to tickle a baby’s lips and cheeks with a Nuk brush. Siblings can learn beginning signs such as mom, dad, more, drink, etc. and can use them regularly with the baby. You can make a game of having all your children bombard the baby with specific sound combinations. For example today can be “ga gu, ga gu” day. (Grandparents, cousins, or any other family members work well too :-) And do not feel bad about involving other family members. You would think nothing of having one typical sibling help another with studying for a spelling test or practicing catch.

Call your local high schools to see if there are any responsible teenagers who would like to earn volunteer service by coming to your home once or twice a week to carry out therapy activities with your little one. Check with local colleges to see if there are students in an Early Childhood or Special Education programs who could benefit from the opportunity to volunteer in your home working with your child. You can show the student volunteer exactly what you would like them to do.

Make Routines
Devise ways to fit therapy into your everyday baby doings. Have your child’s therapists create some routine-based activities for you. For example, after each diaper change I have my daughter do two rotation sit-ups (a modified sit-up where she pushes up from her side into a sit position). When I dress her in the mornings and put her jamies on at night, I do a couple minutes of body massage. At lunchtime, I put her in the highchair a few minutes before her lunch is ready. While she waits, she chews on a vibrating teether or plays with her Nuk brush. By the time I get her lunch set up, most of her oral stim work is done already! This is formally called the routine-based early intervention model. Your therapists will know how to implement it into your individualized daily routine.

Have your child’s therapists write down a step by step therapy routine that you can follow for specific skills you are working on. Keep it short and simple. For example, have your PT write up a 15 minute warm up, skill practice, warm down activity list for you to use when you are working on a specific gross motor skill. Having a cue card to help you run through the moves will help you get it done.

Schedule in one or two therapy sessions a week on your calendar for you and your baby. Treating this like a weekly appointment may be what you need to make it happen. Completing a session with your baby even once a week will help you reach your baby’s EI goals and will leave you feeling like you have really accomplished something.

Ditch the Guilt
Feeling guilty about not carrying over early intervention therapies is a good sign that you care deeply about your child’s success and your role in it. So you didn’t do any therapy today... or yesterday. There is nothing you can change about that. Don’t go feeling bad. Remember that those days were filled with smiles, chattering, hugs and kisses, good food, and plenty of goings on for your baby’s edification. Tomorrow is a new day and who knows, you just might find yourself rolling your baby around your livingroom on a big plastic tube!

Guilt That’s Really Grief
I sometimes think that no matter what I do to help my daughter, I might still suffer a tinge of guilt wondering if there was something I missed. This feeling of guilt, brought about by skipping a day of therapy or even avoiding therapy, is really a “chronic sorrow” moment. Chronic sorrow is a normal ongoing part of the grief process. It is the occasional revisiting of grief when reminded that something has been lost. Catching myself slacking on therapy is a trigger that reminds me that life with my little girl is not typical. It is a reminder that things are tougher for her, a reminder that she has a disability. Once I realize this feeling for what it is, I give in to my boo-hoo moment, cry a few tears, and get back on track.

Your Turn
Have you got any ideas on how to integrate EI into everyday life? Got an EI slacker confession you want to make? Got some encouragement for us parents who aren’t sure what we’re doing is making a difference? Please take a minute and share it.

Summer Giveaway

2009-07-02T21:06:00.001-04:00

What would you say to a woman who has just found out she is carrying a baby with Down syndrome and is torn about what to do?

Answer this question by July 31 in the comments section of this post or in a post of your own and you will be entered into the DSNM summer giveaway. During the first week of August, I will post my answer to the question and link to all your posts. I will also list the random winner who will have the choice of either prize pack listed below.

The Child Pack
The child pack consists of a bottle of Nordic Naturals Children’s DHA, strawberry flavored, in liquid or soft gel form (your choice) along with the book, No No Yes Yes by Leslie Patricelli.

The Parent Pack
The parent pack consists of the book, More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs by Amy Baskin and Heather Fawcett. (Ok, Dan, I hear you... if it were me I woulda named it More Than a Parent...) and a Lindt Classics Caramel Assortment box of candy. (Can you tell ds.mama likes to read and eat bon bons?)

The real prize is that the words you write may well be read by a mom who needs to hear the truth from a parent who knows what that is.

New Baby, New Blog

2009-06-30T22:53:00.000-04:00

There is a new blog out there you just have to go visit... It is called Kaitlyn's Korner. Kaitlyn will be joining us this summer on August 4th. Stop by and read her story and make sure you let her mom, Jenee, know what a wonderful gift she is getting.

Birth Announcement

2009-06-27T08:59:00.001-04:00

There is a new little angel in town... Luke Thomas was born to Chad and Christina on June 19. Go have a peek at him and meet his family.

Thank you Rebecca for the lovely 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.

A Dozen Tips for Navigating NICU/PICU

2009-06-23T01:09:00.001-04:00

Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby.

1. Understand your baby’s condition. Go ahead and google reputable sources. In the two hospitals we did time in, I got the clear impression that the doctors did not want parents reading up on the internet. They felt that it filled their heads with unwarranted hope and misinformation. I disagreed. Reading about cutting edge technologies or other children’s miracles and successes helped me to formulate questions that needed to be asked and to stay encouraged. It also helped me to stand up against doctors’ suggested procedures and care orders that I was uncomfortable with and not convinced about.

2. Try to be at your baby’s bedside for rounds (when the doctors change shifts they walk around the floor and share information about each child’s current status.) Every change or happening from the night before or planned for that day will be discussed amongst the doctors and nurses. This is your chance to be apprised of every detail concerning your baby. Some NICUs and PICUs do not welcome parent eavesdropping or participation during rounds, but don’t be deterred. Ask for a clear explanation of why you should not be there to hear the details of your child’s day. You are your baby’s primary advocate. It is imperative that you are able to hear and understand what decisions are being made and why.

3. If you do not already have a blog, set up a Caring Bridge type of website (easy and free) to communicate your baby’s updates to family and friends. Using social media to broadcast messages means you only have to say (or rather, type) the information once and everyone can read the news. It also provides a wonderful way for those who care about you and your baby to let you know they are thinking of you.

4. Ask the neonatologist or attending physicians for verbal notification of all written changes to your baby’s medication orders and care orders. Make sure you understand why the change is being made. Some hospital units are very open and will not mind you reading your child’s daily sheets which include all doctors’ orders. Other hospitals, or even other units, may not allow you to view your child’s paperwork without an attending physician present. It can be difficult to get a “date” with the attending physician to read up on changes. So, to avoid confusion about care and meds, I found it easier to ask to be notified of changes. If you find your request is not being honored, go higher up the chain. It is your right to know every detail of your baby’s care.

5. If your baby will be camping out at the hospital for a couple of weeks or longer, ask that physical therapy be provided to the extent that your baby’s condition permits. If your baby will not be fed by mouth for any period of time, request therapy to maintain oral abilities and interest. It may seem odd to focus on things like this when your baby is very sick, but it is important.

6. Bring your baby’s favorite music cds, a sound machine, crib mobile, hanging toys—whatever you can—to his hospital room. This is tough to do at first because it feels like admitting that your baby is not just zipping through. Once you get over that, you’ll be glad you did it. Your baby will appreciate hearing music instead of just the monitor alarms. Any positive stimulation is a good thing.

7. Be aware that you have choices concerning your baby’s feedings. You can breastfeed your baby if you want to. If you are told that you cannot feed because your baby is fluid restricted or must have all of his fluid measured, ask for your child to be weighed before and after breastfeeding to determine the amount of milk ingested. If your baby needs a higher calorie milk, you can use whatever formula you prefer including Organic Similac (which the hospital most likely has) or Baby’s Only Organic. If you are told your baby will be getting corn oil added to his diet, you can insist that a healthier oil be used. We agreed to organic olive oil. I would recommend requiring that no new “foods” be added to your child’s diet without your notification and approval.

8. Get to know your baby’s primary nurse. She will know everything that goes on with your baby and it is important to be comfortable with her. If you cannot build a good rapport with her, ask for a different primary to be assigned to your baby. A good primary nurse can make a huge difference in the care your baby receives. If the unit your baby is in does use not the primary nurse model, make daily notes of the nurses who care for your baby. You can refuse specific nurses if you feel uncomfortable with any of the care provided to your baby.

9. Purchase some front-snap/closure onsies and sleepers for your baby to wear in the hospital. These are the easiest to put on over and around wires and tubes and the easiest for nurses to break into for vitals checks. Seeing your baby dressed can actually help you to feel better and your baby needs to soak up those good vibes.

10. Ask about support resources. Is there a Ronald MacDonald house or family room (or the equivalent) nearby, are free long-term parking passes available, can breastfeeding moms get free food trays, what religious services are available, can long-term patient parents get cafeteria discounts, can hand/foot printing or casting be done?

11. Don’t hold your baby down to help with a procedure. In fact, if your baby is a newborn, do not be involved in anything that will be uncomfortable for him. Do not be in his sight or let him hear your voice during any procedures. Your baby does not have a built up sense of comfort by your presence like a toddler would. You do not want your baby to associate any discomfort or fearful feelings with you.

12. Keep a journal. Write down names of nurses, doctors, medications, and procedures. Write down your feelings, your questions, your hopes, and your sorrows. Things blur together in the hospital and it might matter at some point that you remember things accurately.

Your Turn
Do you have some good advice for parents whose children are in NICU or PICU? Please share in a comment or let me know if you have posted on this topic and I will link to you.

Lisa, over at Finnian’s Journey, shared these sage words in a comment on the NICU Tour post,

“I would just add that new parents shouldn't be afraid to advocate for their baby in the NICU. When you're surrounded by so many authority figures in white coats, plus dealing with post-birth hormones and fatigue and perhaps a surprise diagnosis of Ds, it's easy to forget that you're actually this child's parent and that you have rights. Do your homework. Not every procedure is absolutely necessary, and some aren't even necessarily in your baby's best interests.”

Cori's post: Begging to Bring Joey Home
Lisa's posts: Advocacy Starts Early
Hospital Stay/Learning to Eat
Sasha's post: Our Heart Journey: Things I've Learned

She’s Gonna Be A Rockstar

2009-06-16T21:19:00.000-04:00

Ok, or maybe she'll be a chunky thigh model.

It is natural to wonder what our children will become when they grow up. We nurture them. We provide them with early intervention. We send them to school (or educate them at home.) We teach and train them. We love and adore them. We like to imagine the possibilities. We hope for the best.

And, cough it up moms, we worry for them. I can’t tell you not to, but we both know it doesn’t do us any good. Our children will be fine. Our children will be artists, companions, public speakers, photographers, actors, mailroom clerks, musicians, cashiers, etcetera, etcetera, etcetera.

To give you a glimpse of the future, I’d like to highlight some talented people who are already grown up.

Michael Jurogue Johnson—Artist
Michael is a painter and illustrator. He works with watercolors, acrylics, and oils. Michael’s work is both expressive and lovely. On his website you can purchase original paintings, posters, note cards, or even commission a painting of your child inspired from a photo you provide. If you haven’t seen Michael’s work before, go visit his site. You will be impressed.

Karen Gaffney—Public Speaker, Advocate, Foundation President
Karen’s website describes her as dedicated to championing the journey to full inclusion for people with Down Syndrome and other disabilities. Karen will be speaking at this year’s National Down Syndrome Congress Convention as well as presenting at the World Down Syndrome Congress in Dublin, Ireland. She is also an olympic swimmer and has completed a relay swim across the English Channel. Wow.

Sujeet Desai—Musician
Sujeet is a musician (accomplished with six different instruments) who performs solo across the United States and the world. He is the winner of eight national and international awards. He will be appearing at this year’s World Down Syndrome Congress in Dublin, Ireland. He is one busy guy playing his music weekly throughout his local community, working in a library, practicing martial arts, and hanging out with his wife, Carrie (who is also a public speaker.)

I chose to give some detail about these three in particular because they are masters of skills I will never possess. I am “typical” but I will never be able to paint like Michael, swim (or open my mouth in public) like Karen, or play music like Sujeet. These are gifted individuals.

And you know what? Your child with Down syndrome is also gifted. Your role is to provide opportunity, to make room for that gift to grow. Someday your little Bob the Builder (ok, in this instance it's Brian the Builder) is going to grow up and contribute to the world around him in ways you can’t even guess today.

All photos used with permission.

10 Things Mama’s Gotta Have

2009-06-09T22:49:00.000-04:00

I try to imagine what life was like for a mom 100 years ago. Honest to God, my great-grandmother must have been a saint to raise all those kids without baby swings, pack-n-plays, batteries, or premoistened butt wipes.

Fortunately we do not have to suffer like she did. Here are my top ten picks for making life with your new baby a little easier on mom (and dad!)

Infantino Peek-A-Boo Bunny Mobile

Each of my children got a mobile that matched his or her crib set. There were hanging bunnies or bugs that, when wound up, went round and round to a soothing lullaby. Nobody seemed all that interested in them. But when my little girl was doing time in the PICU, a nurse attached the Infantino Peek-A-Boo Bunny mobile to her crib and wow, she adored it. I liked it too. It plays your choice of three songs (15 minutes long), one of which is a very cute catchy tune that has baby laughter in it. It has two volume settings, a night light, and a remote. But the best part is the set of plastic bunnies with musical instruments that spin slowly around. Their ears flip over their eyes, whistles move, drums beat, faces appear and disappear. They could rename this the ”object permanence concept” mobile. 39.00 Amazon

BébéSounds Angelcare® Deluxe Movement Sensor with Sound Monitor

There is no reason to think that a baby with Down syndrome is at any higher risk for SIDS or any other sleep dangers but since we already have enough to stress about, I opted for this baby monitor. It lets you know, after 20 seconds, if your baby stops breathing. It has an amazing range of over 800 feet so I can go outside and work in my garden during nap time. I have had no interference or sound quality issues with the receivers. The only con with this monitor is that if you forget to turn it off when you take your baby out of the crib for a midnight feed, the whole house is going to know about it in 20 seconds! 103.99 Online

Rainforest Melodies & Lights Deluxe Gym

There are lots of nice baby gyms out there but this one is my favorite. It has lots of link points to attach toys to the mat or to hang them over and around your baby. There are several modes of lights and sound play, including a baby-activated mode which plays for about 10 seconds per toy yank. This is great for teaching cause and effect. The playmat is brightly colored, quilted, and easy to take off and wash. This gym has been the source of much entertainment for my daughter since before she could even roll over. I take it with me whenever I go to other people’s houses or anytime I take the pack-n-play, since it fits so nicely on the floor of it. 54.95 Baby Earth

Changing Table Mobile

Hmm, how do you keep your baby cheerfully distracted with her hands out of the goods during diaper changing time? Hang up a changing table mobile. I have had ours since baby number one and it has been a hit with all of them. This was the only toy that tempted my little girl to reach straight up against gravity when she still had little strength or muscle control. Ours has two bugs and a mirror toy that are attached by magnets. This allows her to pull the toys down and play with them while she gazes at herself in the mobile mirror. Unfortunately, I cannot find ours anywhere, new or used, so I have picked out what I hope is a close enough substitute, the Infantino Wall Mounted Mobile - Lion. 22.41 Amazon

Fisher-Price Rainforest Jumperoo

This is the perfect contraption for when your baby has enough core strength to stay upright and hold her head steady without support. 10 - 15 minutes a day in this jumper is a good way to strengthen your baby’s legs and encourage the foot stepping (pre-walking) reflex. Later on when 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 my daughter favors the spinner filled with beads. 89.99 babiesrus

Space Saver High Chair and Booster

Sometimes children with Down syndrome have a hard time eating and maintaining core muscle strength to hold themselves upright. The Space Saver highchair has a 5 point restraint strap to help your little one stay well-supported while she focuses on eating. It also has a three position seat recline to give your baby more or less support as needed. The tray is wide and goes on and off easily. The seat cover wipes up nicely (but does make my daughter sweaty on her back if she is in it for a while.) For a baby who wants to eat but isn’t physically ready to manage sitting up unsupported through a whole meal, this is the perfect seat. The official description says not to use it for a baby who cannot sit unsupported but I am guessing they are referring to the booster chair feature. This chair was recommended by our physical therapist and has made a huge difference for my baby at mealtime. 48.88 Walmart

Infant Seat Cover

Babies are not as adaptable as adults to temperature change. They lose heat quickly and they overheat quickly. The infant car seat cover is great for keeping your baby bundled up from the cold yet can be opened up swiftly and easily when you are in a heated car or building. It is so much easier than wrestling with a snowsuit or multiple blankets. I prefer this model because I like to keep my baby’s face clear of fabrics and coverings but there are other options out there that close up. 29.99 babiesrus

Cuisinart Mini-Prep Processor

Sooner or later you are going to have to branch out beyond breast milk or formula. All those little jars of 1st, 2nd, and 3rd foods are going to add up, especially if you are going organic. And, after a while your baby will move beyond 2nd and 3rd stage but she might not be ready for what’s cooking for dinner in your house. Invest in a mini food processor and whip up homemade baby food with the perfect consistency to suit your baby’s development. Black bean soup, red beans and rice, white turkey chili... you name it, your baby can eat it once you’ve zipped it through the mini processor. The Cuisinart mini processor is small enough to store almost anywhere in your kitchen and it is easy to handle and clean up. 29.95 Amazon

Fisher-Price Ocean Wonders Aquarium Cradle Swing

I do believe I would have lost my mind sometime in the last six years if not for this swing. It swings side to side and front to back and has two recline positions. It has songs, lights, and a spinning mobile (none of which I ever use anymore.) The mobile part has plastic loops that are perfect for hanging links from and attaching all sorts of toys to entertain your baby. It takes four D batteries and they last for a good long time in it. There are some reviews that complain about the motor and our swing no longer has more than one speed but it does not matter, this swing is still the best baby apparatus ever created! The newer models (rainforest and precious planet) don’t sit the same or swing the same, or have those wonderful loops for adding links. 119.00 babiesrus

Boppy

I confess... after my first child, I threw out both my Boppy and a lovely imposter pillow. I never used them for nursing and my typical baby didn’t need them for propping or playing. Then a few years later, along came my little darling who couldn’t do much of anything for quite some time. I ran out and bought a new Boppy so she could see the world (ok, the PICU) from a better view. At home she uses it for propping up on her back or front. I use it to keep her from rolling away when I want her to stay focused. I use it while she is in s supported sit to hold her toys up where she can reach them easier. It comes in handy during my physical therapy work with her as well. 25.00 for the pillow at Amazon, slipcover prices vary. 24.99 for the organic pea in the pod version.

Your Turn
Ok, bubble bath, chocolate, and ear plugs aside, what’s your “mama’s gotta have it” item? And, can anybody recommend a really good baby bathtub?

MaggieMae had a great idea... that we should all write our "Mama's Gotta Have It" posts and share them. She writes,

"and then the blogosphere will have some really useful hands-on, money-saving tips and product recommendations for all of us mothers of children with and without Down syndrome, with and without developmental delays, all with their very own flavor, talents and challenges..."

So how 'bout it? If you do it, let me know and I will link your post here.
MaggieMae: Down Syndrome Awareness -- Gotta Have Its AND How I Used Its!
Ria: Top 10 Baby Gotta-Haves
Lisa: Things Mama's Gotta Have

Picture Cards, Make Your Own

2009-06-05T09:29:00.000-04:00

Language development... we’re all working toward it everyday with our children. We talk to them, sing to them, read to them, sign to them... But we know that reciprocation, our children being able to verbalize to us, comes later than their ability to understand language. So in the meantime we are teaching them other methods of communicating with us, using sign language and picture cards.

There are some good picture card resources out there. For free on the web, you can download and print cards from the See and Learn Language and Reading program. I like these cards because they use children with Down syndrome as models, the images are very realistic, and access to the cards is free. However, you still have printing costs, laminating costs, and the colors on the cards blend together too much, which I think might make object differentiation hard.

You could also purchase premade packs of First Word card sets. There are several packages to choose from, the colors are good but the sets are pricey and not all of the pictures in each set will be useful with every baby. Do I really care if my baby learns what a car key is?

To get the perfect set of picture cards for your baby, you have to make your own. It is easy to do and you will end up with a set of cards that is realistic, durable (chew-proof!), and specific to your baby’s world. When you make your own cards using your baby’s spoon, bottle, books, family members, etc., your baby can immediately recognize the object. Using cards from other sources means your baby has to be able to generalize that the picture of a cup is a representation of his cup. When your baby sees a picture of himself reading one of his books, it makes more sense than seeing a picture of just a random book cover.

All you need to get started is a camera, prints, and self-sealing lamination pouches.

Step 1. Take pictures of the objects your baby uses... his spoon and bowl, his bottle with milk in it, his cup, him reading his favorite book, you, his siblings, happy faces, sad faces, the family pet, toys, his crib... You can look at premade card sets to get ideas or jot down notes as you go through a couple days with your baby.

Step 2. Crop and print the pictures so that the object is the main thing in each picture.

Step 3. Laminate the pictures back to back so that each card has a front and back picture. Do not put pictures that could be offered as choices in the same pouch. You want your baby to be able to see both choices at the same time so that he can point to the card that has the object he wants.

Step 4. Show your baby the appropriate card prior to doing whatever is on the card. Before you know it, your baby will realize that the card represents the upcoming action or activity. Long before he can say he prefers an apple to a banana, he can choose the picture of an apple at snack time.

You can also use the cards when you are reading to help your child with generalization. When you get to a picture of a ball in the story, show your baby the picture of his ball. It is important that you also say and sign the word when you use pictures. Picture cards are a resource for enhancing language development and facilitating communication, not a total replacement for signing/speaking.

Your Turn
What picture cards are you using with you baby? Let me know and I will add a link here to your post about it.

Lori: Special Connection Homeschool: Introducing Reading with Sight Words
Perplexing Situation: Friday Organization

What's In Your Baby's Bottle?

2009-05-30T10:49:00.000-04:00

There are lots of good reasons why you might be buying formula for your baby. Some babies need extra calories added to breast milk, some babies have swallowing difficulties and need thicker food, others may be drinking more than you are able to produce. Maybe you’ve gone back to work or maybe pumping just wasn’t working out too well. No matter the reason, choosing a formula can be confusing.

Beyond deciding between the brands there are the questions... soy or dairy? Organic or conventional? Iron or DHA fortified or neither? And let’s not forget that formula is expensive, so the choice must be something we can afford.

No, I am not going to compare and rate baby formulas. In fact this post is going to be completely biased but when I am done, I hope you’ll understand why.

Five years ago when it was time to go back to work after my first baby, it was my turn to wander the baby food aisles of my local markets in search of the best formula I could find. Back then (seems like the dark ages) there was not one organic style of formula on the shelf. So I chose the brand they had given me samples of in the hospital. My son never ended up getting any of it because after taste testing it, I threw it out (in a fit of tears, which I am sure was a combo of hormones and going-back -to-work blues.)

What do you do when you don’t know what to do? Google the internet. Online I found an organic baby formula fortified with iron called Baby’s Only and developed by Nature’s One. I researched their nutritional information and found it to be comparable to the brands I had seen in the grocery store. It looked good but I still had questions... It said right on the can that it was a toddler formula and my son was just a 5 month old infant. And, what if after I spent the money on a can and shipping, I found out that it tasted as bad as the others? What if it caused the constipation I had been warned about?

I contacted the company and spoke with their nutritionist. She explained that the formula is labeled “toddler formula” because the company promotes breastfeeding for the first year of life. She told me it was perfectly safe to use the formula for my infant but to take the nutritional information to my pediatrician for his blessing. I asked for a sample and within days, a can of dairy-based powered formula appeared on my doorstep. I mixed some up and took a swig. Dare I say it was yummy? It was pretty good, with no metallic aftertaste. Our pediatrician approved it and so, I used Baby’s Only with my first two children.

Then along came baby #3 complete with Down syndrome and a broken heart. From birth she was fluid restricted to ease the work load on her heart. Within weeks the neonatologists were talking about fortifying her milk to add calories. I took it hard. I was obsessed with giving her only the best. I explained that I was concerned about using conventional formula, so they offered me Similac Organic.

But I was unsure. I knew that a lot of the food giants had jumped on the organic train in the past few years but that didn’t guarantee their product was as good as Baby’s Only. I brought an unopened can into the NICU and pled my case to the hospital’s nutritionist. She lifted it skeptically from my hands and agreed to research it. She said she would let me know within a few days whether or not their highly-respected children’s teaching hospital would approve this formula.

Slight digression here... You may be wondering what was happening in the meantime with my daughter’s need for more calories. I had found a tip in a breastfeeding book for naturally adding calories to your bottled breast milk. It said to pump hind milk and let it cool in the refrigerator. The cream will rise to the top. Scoop (or syringe) the creamy upper layers and mix it into 2 ounces of regular breast milk. The nurses jokingly called it “high-test’. I wasn’t allowed to do this as a longterm solution because there was no way to know how many calories I was actually adding and in the NICU things have to be exact.

Guess what? The nutritionist approved the formula and we started adding it to my baby’s milk. As with my other children, there was no constipation, no refluxing, no refusals to drink it. Now when she doesn’t nurse, she gets straight Baby’s Only dairy formula. (I always start my babies on a half breast milk, half formula bottle and then over a few days move to just formula.)

So it’s a great organic formula, so what... ? It is a great company, too, because they believe children with Down syndrome should have the best in life. To this end, they have a Medical Hardship program that provides you with a 30% discount on their products for children with Down syndrome (or any other medical hardship diagnosis). All you do to enroll in the discount program is fill out the form and have your baby’s doctor sign it, and send it in to them. You can order your formula from their online store.

The discount price of around 6.95 per can for the dairy formula (with free shipping on case orders) puts the cost at about .09 cents per prepared ounce. Similac Sensitive is about .13, Similac Organic is about .14, Earth’s Best Organic is about .14, and Enfamil Lipil is about .145 cents per prepared ounce. All I can say is “Wow, thanks Nature’s One!”

Um, ok, I can also say they give out free samples and they ship product super fast (ahem, for those of us who forget we’re on the last can.) Go get your sample and see what your baby thinks.

Nursing Tips

2009-05-26T20:10:00.001-04:00

Nursing can be a frustrating experience for both baby and mother when it doesn’t go smoothly. For some newborns there are obstacles that must be overcome or mitigated before they can successfully breastfeed. It is important to have realistic expectations in order to not become discouraged and give up. It can take up to 4 or 5 months before some babies reach the turning point and are able to nurse without special support or guidance. The key to achieving a breastfeeding relationship is patience and persistence.

For a mother who wants to breastfeed, there are few things more emotionally difficult than not being able to get it to work. The ideas I am going to share with you come from some of my own painful experiences. My daughter was born with significant cardiac issues and spent the first four months of her life in the hospital. She was both bottle fed and fed through a nasogastric (ng) tube that went up her nose, down into her stomach. Later she was fed through a g-tube that was surgically placed in her stomach. Three times during her hospital stay she was not allowed milk via mouth or tube for days and lived on nothing but an I.V. bag for nutrition. But, despite all that, she learned to nurse, never quite perfectly, but well enough.

Feeding Snags
Lots of things can interfere with a baby’s ability to nurse. Perhaps your baby has a lack of strength and stamina due to a cardiac issue, or maybe her low tone is making it hard for her to get the hang of latching on and swallowing. If your baby is in the NICU and you have been discharged from the hospital, it is even more difficult to establish a nursing relationship.

For whatever reason, if your baby can not breastfeed from the start, you will have to accept an alternate method of feeding as a backup. In most cases this will be the bottle, but for some it means an ng tube or a g-tube. Don’t stress that the secondary feeding method will ruin your baby’s ability to nurse. You’ll just have to work around it.

Mother’s Little Helpers
There are several things you can try to facilitate nursing. Me, I was so desperate that I tried them all. Some were very successful and others not so much for me and my baby, but that doesn’t mean they won’t work for you.

A Lactation Consult—As soon as you see that your baby is having trouble latching or swallowing, request a consult with the hospital’s lactation support person. Having a pro help you with positioning and such may be all you need to get things going.

Oral Stimulation—Give your baby some oral stimulation prior to trying to breastfeed. Make sure your hands and nails are scrubbed clean before touching your baby’s mouth. Stroke your baby from her mouth upward to her cheeks. Use a gentle downward stroke on the outside of your baby’s throat to encourage the swallowing reflex. Rub your baby’s gums, top and bottom, starting from the center and moving to the side and then back to the center. Stroke the corners of your baby’s mouth, once per side, in an arc starting from the top center and working down to the bottom center. Just before presenting your nipple, put your finger pad on your baby’s tongue and gently push it down from the roof of her mouth. When you feel her begin to cup her tongue to suck, quickly remove your finger and insert your nipple. This is easier said than done (trust me on this one) but it is worth a try.

The Dancer Hold—Whether breast or bottle feeding, you can use the Dancer Hold to support your baby’s cheeks and encourage latching and sucking. The Dancer Hold is a special hand placement that is complicated to describe but a lactation consultant can show you exactly what to do.

Positioning—A baby with low tone needs to feel fully supported while she is trying to eat. You can do this by swaddling your baby although this might put her to sleep. You could also try different nursing positions as long as you are supporting your baby’s body from head to toe. My favorite position to accomplish this is side-to-side (though this is probably not something you can do in the NICU). I place my baby on her side on a slightly inclined pillow and lie next to her. This way she is fully supported and does not have the weight of the breast on her. She can also control the flow of milk easier from this position and I have free hands to help her if necessary.

Nipple Shield—A nipple shield is a temporary solution designed to help train a baby with latch difficulties. You can use the shield over your nipple to make it sturdier, thus helping keep your baby’s tongue in position. Your baby will not lose the nipple if she is unable to secure or maintain a latch. These are not one size fits all and sizing is based on your baby’s mouth size not your nipple size.

SNS Feeder—The Supplemental Nursing System made by Medela can be used to teach your baby that milk comes from your breast if she is unable to get a good enough latch to cause you to let down. It is also helpful if your baby just doesn’t seem to know what to do at the breast. The hospital can provide you with the kit and show you how to use it. Basically you fill the bottle up with milk and then hang it upsidedown taped to your shirt or skin above your breast. There is a tiny tube that the milk flows through that goes into your baby’s mouth (along with your nipple). When your baby makes any attempt to suck (or even if she doesn’t) you can allow milk to flow into her mouth. The flow rate is adjustable and if your baby gets your milk to kick in, the feeder will let off on its flow accordingly. When I used this with my daughter she spat out my nipple and sucked the milk through the little tube like it was a straw.

Pumping—Sometimes the timing is all off when you go to nurse. Maybe you are so ready that you are leaking and your baby is overwhelmed by the flow. Maybe the milk isn’t there and your baby’s latch and suck is too weak or uncoordinated to get it going. In either case you can try pumping prior to nursing to resolve the problem. You can pump until the flood subsides or pump until you get a let down and then offer your baby the breast.

Ambience—There are a couple environmental things you can do to make nursing easier. First off, make sure you are comfortable because nursing a baby with low stamina or low tone can take a while. Have your boppy and a bunch of pillows handy, and a bottle of water for you. Turn the lights down but not off. Bright lighting will make your baby close her eyes and then it’s zzzz for her. The same thing will happen if it’s too dark. If your baby is too sleepy to eat you can try changing her diaper or massaging her to wake her back up. Also be careful to position your baby with her head up a little bit so that the milk will not back-flow into her ear canals. Make sure you burp your baby often since babies with eating difficulties tend to take in more air which can make your baby feel prematurely full and uncomfortable.

Protecting the Nursing Relationship
It is important to keep your baby aware of breastfeeding, or in other words, to protect the nursing relationship when you must use a secondary method of feeding. This means that you must make your baby associate filling her tummy with the smell, taste, and feel of the breast.

Bottle Feeding—Attempt to breastfeed your baby prior to bottle feeding her. Allow 5-10 minutes of practicing latching and swallowing. If your baby can’t get a good latch or a few good swigs after 5-10 minutes, you should try the bottle. You don’t want to frustrate your hungry baby or have your sleepyhead drift off again. Until your baby makes the connection between you and nursing, you should have someone else offer the bottle, if possible.

Tube Feeding—If your baby will be having a tube feed, position her as if she were breastfeeding with her face against the skin of your breast. This way she can practice nursing while her stomach is filling up. She will learn to associate feeling full with the breast. You can even do this if your baby is fluid-restricted and not allowed to feed directly from the breast. Just be ready to take her off if she does manage to get a good latch and starts drinking. (I know that seems mean, but remember her belly is filling up and she is learning how to use her mouth, so it isn’t as bad as it sounds!)

Continuous Tube Feed/I.V. Bag—If your baby is on a continuous tube feed or an I.V. bag, ask the doctor if every so often you can simulate the nursing experience by holding your baby in the nursing position, skin to skin, while offering her a pacifier dipped in breast milk, water, or even a couple drops of sucrose. This exercise will train your baby to continue to accept oral stimulation and to associate it with you/your breast.

Pumping—The big thing you have to do to protect the nursing relationship is keep your milk supply up. Not so easy when nursing isn’t consistent. You and the pump might be spending a lot of time together. Most hospitals have super pumps but if you will be pumping at home you may want to consider buying or renting a really good electric pump. (Many insurance companies, including some medicaid plans, cover part of the pump rental fee if your baby is in the NICU.) There are two things you can do to make pumping easier. You can take pictures of your baby nursing (or pretending to nurse ;-) and put them in a little photo book that you can look at while you pump. This visual stimulation of seeing your baby nursing on you will encourage let downs while you are alone in the pumping room. Also, pumping right after you have practiced or simulated nursing with your baby will help you to get a good let down. Pumping on one side while you are nursing on the other is even better yet, but might be a bit tricky in a NICU or without someone’s help.

NICU Nursing
Trying to breastfeed your baby in the NICU can be tough. Make sure you let the doctors and nurses know that you want to breastfeed your baby and don’t let them discourage you. While the NICU staff will agree that breast milk is optimal they may seem like they prefer it coming from a bottle. They may be concerned about your baby’s efforts (energy expended) to nurse if she has a cardiac issue or they may just not be that experienced with breastfeeding babies with Down syndrome. They may insist that they need to keep track of the exact amount of milk your baby is ingesting. If this is the case, suggest that they weigh your baby before and after you breastfeed to determine the amount of milk your baby received. Do not be thwarted. Discuss a nursing plan with the doctors that will be medically safe for your baby.

When It Just Won’t Work
If you are unable to establish a breastfeeding relationship with your baby, remember that almost all the same benefits can be had by pumping your milk and feeding it to your baby via a bottle or tube. The bonding that occurs with breastfeeding can be developed by creating a special routine that is just between you and your baby. You could do baby massage, kangaroo care time (where you have your baby lie against you skin to skin), or a lullaby and snuggle time each day. The oral motor tone that is developed by breastfeeding can be worked on with oral stimulation techniques that your baby’s speech therapist can teach you.

Your Turn
If breastfeeding did not come easy for your baby, would you share your experience on what worked for you and how long it took your baby to get the hang of it?

Birth Announcement

2009-05-25T14:39:00.001-04:00

Make sure you visit Adrienne at Our Unexpected Journey and congratulate her on Bennett's arrival.

Breastfeeding Basics

2009-05-22T21:53:00.000-04:00

You’ve decided to nurse your new baby. Well that’s good news because there are many benefits for you and your baby that come along with breastfeeding. Breast milk is filled with antibodies that will help protect your baby from illnesses, is easy for your baby to digest, and is priced right. Breastfed babies develop fewer allergies, have improved oral motor tone, and may even benefit with a boost in cognitive development.

Feeding Styles
There are two schools of thought when it comes to feeding your new baby... on demand or on a schedule. I am a proponent of combining the two methods. I fed my babies when they wanted it and woke ‘em up if they slept through a feeding time (evident by the leak tracks on my shirt.)

On-demand feeding is offering your baby the breast whenever he shows signs that he is hungry. Consider that anytime your baby is indicating that he would like to eat, he is communicating with you and it is important to validate that communication with a response.

If you spend any time in the NICU, you’ll learn all about scheduled feedings... you might even think you’ve signed up for baby bootcamp. The nurses will feed your baby (or have you feed him) according to a strict schedule that they will determine for you. Because it takes a little longer to feed a baby with low tone, you may find the NICU schedule hard to keep. At home, it might be easier to let your baby determine when he should be fed, unless of course, he would be content to sleep through feedings. If you find that your baby is sleeping for more than two hours during the day or three hours at night since his last feeding, you should rouse him and feed him.

Baby Math 101
How much milk is enough? A newborn baby should eat approximately 90-100 calories per kilogram of body weight per day. There are 20 calories in one ounce of breast milk, which means your baby should drink 4 1/2 to 5 ounces of milk per kilogram per day. For a 7 pound baby this equals about 14 1/2 to 16 ounces of breast milk per day. Take heart, that’s only 2 oz. (or 60 ml.) per feed (every three hours)!

Huh? How do you figure that out? Take your baby’s weight in pounds, convert it to kilos, multiply it by 100 (or 90, your choice) and then divide it by 20. That number is the total ounces of milk your baby needs per day at his current weight.

You will know that your baby is getting enough to eat by:

the number of wet diapers he produces. Your baby should have between 5-6 wet diapers per day (after your milk comes in). You can also weigh your baby’s diapers on a small scale. By subtracting the diaper’s dry weight (say 22 grams for a Pamper’s Swaddler #2) from the weight of the wet diaper, you will get an indication of how much your baby is taking in. For liquid volume, one gram is equal to one milliliter (ml) and 30 ml is equal to one ounce of milk.
the number of poopy diapers he produces. In the first few days there are usually only a couple tar-like (meconium) poops per day, however, by the end of the first week he should be pooping 3 or 4 times per day. Some babies poop after every feed!
the weight he gains. For the first three months of life, a new baby will gain just about an ounce a day, adding up to about 6-7 oz. per week. This can be difficult to measure at home so if you are really concerned with weight gain, you may want to rent a baby scale. Some insurance companies will cover part of the rental fee if your pediatrician writes a script for this. Another option is to get a script for a visiting nurse who can come weekly to weigh your baby (and do vitals and other routine checks). Remember, as your baby gains weight, his caloric needs go up accordingly.

Keeping Track
For some of us (and we all know who we are) keeping track of exactly how long the baby nursed, on which breast, and at what time can become a bit of an obsession. Print off a couple copies of this handy chart to facilitate your record keeping. You may find that your baby has a preference for one breast over the other, or has certain nursing patterns.

Dang, This Just Isn’t Working
Not all babies take to nursing right away. Check out my post, Nursing Tips, in which I share some ideas that might make a difference for your baby.

Memory Development

2009-05-17T08:11:00.000-04:00

Memory is the storage system for all information and new learning. Researchers have observed and suggested that the long-term memory function (skills learned and events recalled) for children with Down syndrome is good. Therefore we will focus on the short-term memory abilities and how to improve them.

The short-term memory can be compared to a computer CPU (central processing unit) that has two distinct hard drives, one for verbal/auditory information (called the phonological loop) and one for visual information (called the visuo-spatial scratchpad). More good news; the visuo-spatial short-term memory spans for our children is comparable to those of typically developing children of similar non-verbal mental age (mental age as determined through non-verbal skills).

However, verbal short-term memory spans, which play a critical role in learning to talk, are specifically impaired. There are several contributing factors to this phenomenon and studies continue to explore how and why these factors influence the phonological loop function.

The first thing to remember is that brain functions usually show dynamic development, meaning they are positively influenced by input and activity. Over time, with consistent intervention, a child with Down syndrome can improve his phonological loop function, thereby increasing his working memory function. This is important for many thinking skills but especially for the development of expressive language (speaking).

Keys to Increasing the Phonological Loop Functionality
After studying the factors that influence the development of the phonological loop, researchers have found several ways parents can help their babies, starting in infancy.

Good Hearing
It is imperative that your child be able to accurately hear words in order to differentiate between them. You can maintain good hearing ability by vigilantly protecting your child’s ears. Your baby should have a hearing test at birth, 3 months, 1 year old, and every year thereafter, and at any other time you think your baby is showing signs of hearing loss. Ear infections are the main contributor to hearing loss in children with Down syndrome.

To avoid ear infections as much as possible:

Do not nurse or bottle feed your baby when he is lying down, as the milk can flow into his ear canals from that position and cause infections.

Wash your hands, and make everybody else in the house do it too, often. Get some Purell, or another anti-bacterial hand sanitizer and use it prior to touching your baby. Clean your baby’s hands with Purell and then a baby wipe anytime he has been out in public touching stuff other people/children have touched. Be a germaphobe, it’s ok.

Do not expose your baby to any second hand smoke. This includes smoke residue on someone’s clothes, hands, face, and in their hair. Someone smoking outside and then coming in and holding your child is still second hand smoke exposure, according to the pediatric cardiologist that attended the babies in the PICU we were in. I heard him give the "talk" to many parents (he had a nose for cigarette smoke!)

Stay up on your baby’s vaccinations. Don’t let the controversy over some vaccines keep you from protecting your baby. You can ask for the flu shot that does not contain thiomersal (which has mercury in it) and you can hold off on the MMR until your baby is 2 or even 3 years old. (The MMR is the vaccine that has been questioned for its possible link to autism.) But do consider getting the pneumococcal conjugate vaccine and the influenza vaccine (the flu shot), since they protect against illnesses that are known to bring on ear infections. (Read the comments for this post to hear other parents' thoughts on vaccines.)

Instill a Love of Reading

Research has shown that children who are better readers show bigger gains in short-term memory ability. Daily reading instruction has a huge influence on the capacity of the phonological loop. In preparation for a preschool reading program, it is important for your child to be motivated by picture and story books. Reading picture books to your baby also provides visual support for learning language. Remember that your baby’s visual hard drive is one of his strengths and can be used to aid the development of the verbal hard drive. So go ahead and read to your infant for at least a few minutes everyday. Make it a special time that is comfortable and enjoyable.

Exposure to a Good Spoken Language Environment
Speak often and very clearly to your baby using child-directed speech. If you are not sure what to talk about with a newborn, you can describe what you are doing to her, or describe the things in her view. Do not use baby talk when speaking to your baby, as it is very important that she hear correctly spoken words from the beginning.

Also, try to include children’s songs that have sequencing in your repertoire of songs you sing to your baby (i.e. One, Two, Buckle My Shoe and There Was An Old Lady Who Swallowed a Fly) This helps to lay the groundwork for learning activities associated with phonological loop development that will become important in primary school.

This also means inclusion for your baby right from birth. If you have to make choices about your new baby’s environment (daycare or other programs) consider that a natural speaking environment is more stimulating and will provide more accurate language feedback for your baby than an environment where there are many children with delayed or impaired speech.

Play Babble Games
It is important to play babble games with your baby to encourage speech sound discrimination. Babble (i.e. ma, ma, ma or bla bla bla, etc.) to your baby and then give her a chance to babble back to you. Make sure you give your baby some extra time to reply since it often takes a baby with Down syndrome a little longer to process and organize responses. In the first months of her life you won’t get a babble response but starting as early as the 7th or 8th month, you will start to hear your baby babble back to you. (For us it was around 9 months old and only after she started eating puffs, which got her mouth moving in a new way.)

Evidence has shown that it is important to begin speech work in the first year of a baby’s life. There is a speech sound program, in book form, by Swedish speech and language therapist, Irene Johansson, that details how to provide specific ranges of speech sounds and combinations for your baby. The book follows a week to week format and is aimed at children with Down syndrome and/or autism. (If the expense of keeping up with all the latest books on Down syndrome is overwhelming, consider asking your local Down syndrome support group if they have a library and if they would include this book in it. Then go borrow it!)

Play Auditory Discrimination Games
To build on speech sound recognition you will want to move up to word recognition when your baby is ready. As soon as your baby is able to point and has comprehension for 50-100 words you can begin playing word discrimination games using pairs of picture cards or objects whose names rhyme or sound similar (i.e dog and frog, chair and bear.) You can ask your child "Which one is the chair, the dog, etc.? Then have your child point to the object.

Keep It Up
The activities I have mentioned are specific to improving your baby’s short-term memory function, attention span, and memory’s processing capacity. Research has found that these gains will not last over time if training and support for memory skills are not continued. Improving the short-term memory and all that comes along with it is a life-long endeavor, but the proven benefits are well worth the effort.

Straight From the Source
If you are interested in understanding the details of short-term memory or in reading the research I used (um, even somewhat plagiarized for your edification), you can read the publication Memory Development for Individuals with Down Syndrome by Sue Buckley and Gillian Bird online. The publication details strategies for increasing memory function for children up through the teenage years, so for those of you with toddlers and older children, it might be worth reading for the information I did not cover here.

Picture Credit
Lily from A Walk in Lily's Garden

What If?

2009-05-15T06:15:00.000-04:00

by guest blogger ch

Our daughter, LC, is adopted. My husband and I stood in the delivery room and watched her birth. We were left speechless by the honor of becoming her parents in a way that felt as if we had been tangibly touched by the hand of God.

(What if adoption didn’t ask a birth mother to say, "Take this from me" but, instead whispered, "Share this child with me"?)

The truth is, we adopted a baby that didn’t need a mom. LC has a mother. And, believe me, she has earned the title. When she learned of her unborn baby’s diagnosis of Down syndrome and multiple heart defects early in her pregnancy, she did her research and attended numerous appointments with a variety of specialists to ensure this child would have every possible chance at a healthy birth.

For over 200 mornings she was kicked awake by little feet that would one day run through someone else's home. Month after month, she saw doctors and endured procedures to care for a baby’s heart she would entrust to someone else's keeping. For so many weeks, she sacrificed relationships, social acceptance, and convenience to shelter a tiny body. Night after night, she prayed for her child, and for the strength she would need to say good bye.

(What if adoption wasn’t about breaking ties but about building teams?)

People immediately become uneasy when I acknowledge LC’s birth mother. They rush to assure me that I am LC's mom...as if the two were mutually exclusive. I am, indeed, LC's mom and quite proud to be so! I am equally honored to have been invited to assume that role by a woman whose humor, courage, and faith both humble and astound me.

Because of this woman’s choice, LC was blessed with life. She will never feel that she was baby with an undesirable diagnosis —abandoned and found by new parents. LC will know she was unceasingly loved by a multitude of people from the moment each one learned of her impending arrival. She will know that the love she deserves required more than a single person could provide. She will also know that love didn’t require a relationship to be broken, just expanded. We were chosen as a gift to LC by someone who loved her, and continues to do so.

(What if the arms reaching out to adopt a child ensured a bestowing mother would never have to let go?)

God didn’t bring LC to us. Instead, He brought us to LC’s mother. He didn’t send us because we were equipped with amazing faith or infallible parenting skills, nor because we needed a baby. He sent us because He had heard the sound of a mother’s heart breaking.

We didn’t go to create a new family, but to join an existing one. A baby was coming who would need the prayers and ferocious love of more than a few to bring her through the trials she would face in this world. Our reaching arms weren’t fixed to take away. God intended them to hold something together and LC’s mother was brave enough to open her own, and invite us in.

(What if adoption was less about abandonment and more about abundance?)

Our near-daily chats with LC’s mother don’t lessen LC’s recognition of my husband and I as her parents. The presence of a Kellymom in LC’s life does not rob me of my own Momma title. The acknowledgment of our shared parenting role doesn’t compromise the impact my husband and I have on LC’s life, or call into question to whom she belongs. LC belongs to a God who proves it every day through the miracles He works in and through her.

She has been entrusted to us for now and we have been called to continue a good work begun in her long before she reached our hearts or arms. She is both the result of a promise kept to us by God and a reminder of the promise we have vowed to keep.

Inside LC’s baby book, beside a picture of her mother, are lines from the poem, "A Valediction: Forbidding Mourning" by John Donne.

Our two souls therefore, which are one,
Though I must go, endure not yet
A breach, but an expansion,
Like gold to aery thinness beat.

(What if adoption was about creating a blended family to celebrate and share life?)

LC is not the claimed fragment of a mother’s broken heart tossed aside. She is the unifying rhythm of a group of people who have unexpectedly found themselves sharing a single heartbeat. We are a family made possible by a mother’s courageous faith and the grace of an infinitely loving God. We are a family held together by a love like spun gold, wrapping us up and increasing our value to more than we would have ever been alone. There is no question that agonizing sacrifices have been asked of each of us along the way, but also no doubt that they have added to the luster and shine of the treasure we now find ourselves sharing.

-- ch

How to Share the Love

If you are pregnant with a baby that has been diagnosed with Down syndrome and would like to know more about sharing this gift of a child with another family, please contact Adoption STAR. They can assist you with finding a waiting family with whom to share your precious child.

The Welcoming Committee

2009-05-12T00:44:00.000-04:00

No matter when you get the news that your baby has Down syndrome, there is that time period of shattered expectations, of fear and worry. Maybe it happened when your baby was born and you were taken completely by surprise. Or, perhaps it wasn’t a total surprise after all, but the certainty of the diagnosis in the delivery room displaced any hope of a mistaken marker.

For some, those who knew for sure and those who were blissfully unaware until later, that tough time period takes place in private, and the news is shared at the comfort level of the parents. But for those who find out in the hospital, oh the grief is so public, and there is not much time to absorb the shock before the news must be shared with family and friends.

I was one of those "not quite surprised" but not quite ready for reality either. So I had the good fortune of not bursting into tears in front of the strangers on my delivery team and yet I had a long way to go before I could even say it without choking up, "She has, tissue please, Down, sniff, syn, sniff, drome."

I know a young man with Down syndrome and I had seen some children with it here and there, but I had never seen a real live baby who had it. She looked so.... regular... so much like... a... baby. She cried, peed, pooped, rooted, burped, and generally looked cute. But there were those signs, those tiny differences that meant her life would be harder because all the world might not accept her with open arms.

And so for days, I second guessed every decision of importance I had ever made in my life leading up to her conception. Then I worried for her, right through her whole life, in my imagination. I cried for every slight and hardship, and loss she might endure. I wanted to kick the next person who told me a story about someone’s kid with Down syndrome who did something normal... "So-and-so’s kid even graduated from highschool..." or anyone who fed me the platitudes, "They are so joyful...God chose you because you are such a good mom."

It was rough, I admit it. Probably more so because we were stuck in the NICU with no exit in sight. And then it happened... a friend stopped by with a gift bag. In it were little toys for my daughter and a book for me. It was Roadmap to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome by Jennifer Graf Groneberg.

Eight weeks earlier, our fetal cardiologist had given me a packet on Down syndrome and buried in it was the poem, "Welcome to Holland" by Emily Perl Kingsley. I didn’t like it. I had been to Italy, twice, and if I was going to Holland, I wasn’t going to piss and moan for the rest of my life about not getting back to Italy, nor would I be jealous of other people’s children. The Dutch are probably a little annoyed at being compared to the loss of a dream, and for some odd reason I was annoyed too. Please don’t write me a bunch of comments deconstructing and explaining the poem. It just didn’t do it for me (or for Jill over at Rivers of Joy.)

But Roadmap to Holland did. I felt like she was walking in my shoes. I cried and laughed with her. And I was thankful to my friend for bringing me the first thing that helped me to put my head back on straight. Before I left that hospital, I gave the book away, passed it forward, to a couple who had just been delivered a surprise.

When I went out to Amazon.com to replace my copy of the book, I found myself ordering three more copies. I knew then that I must continue to pass it on because every parent who gives birth to a baby with Down syndrome, whether surprised or not, should have an experienced mother come welcome them into this new world. I can’t go in person, as that would require a breech of HIPAA, but I can leave gift bags with the nursery staff with instructions to give them to new parents of babies with Down syndrome.

Your Turn
Maybe gift bags aren’t your style or in your budget, but a handwritten card or letter is just as precious to the new parent who is encouraged by it. Or perhaps you have some other creative way to welcome new parents that you can share with us. Would you consider being the welcoming committee for your local hospital?

Got Tone?

2009-05-09T00:46:00.000-04:00

Babies with Down syndrome have low muscle tone, or hypotonia. When I first heard this, I thought it had something to do with the muscles themselves and that once strengthened everything would be fine. I harbored secret fantasies of mommy/baby strength training with a cute twenty-something trainer. In my imagination, she and I both ended up with hard bodies.

I soon found out that the strength of a muscle is not related to its tone, although low tone can contribute to lower muscle strength. Muscle tone has to do with the amount of resistance to movement in a muscle. This means that the muscle is less stiff than usual and more easily stretched, making it more difficult for the muscle to maintain stability. It also has to do with the speed of the muscles’ responses. It is considered to be a central nervous system disorder and can be thought of as sketchy communication between the brain and the muscles.

You probably don’t need me to describe the clinical characteristics of low muscle tone. You see it everyday. I do too. But just in case you not sure what types of situations are caused by it, I’ll share a few examples. My daughter has difficulty with muscle control (evident when she tries to eat a puff but misses her mouth), slowness of muscle responses to her brain’s commands (the delay between when I jiggle her abs and when she rolls over), and slower reflexes (it takes just that little bit longer for her to cry when she gets a boo-boo.)

However, she can eat a puff, roll over, and cry when she hurts. Low muscle tone doesn’t mean your baby will not develop along the same path as a typical baby. She will... as long as you provide intervention... you know it, the training sessions I was so eagerly fantasizing about.

Work Those Abs, Baby

The strategy for minimizing the effects of low tone has a two-pronged approach. Provide lots of stimulation to improve your child’s muscle function and control, and exercise her muscles regularly to instill a deep, conscious awareness of how her muscles work. Think of it as waking up sleeping muscles and then helping to pave the communication highway between the brain and the muscles.

What should be reflexive (automatic) isn’t and must be learned, and the earlier the better. That is why early intervention is so valuable to counteracting low tone. Starting early ensures that a conscious awareness of how to use her muscles will be deeply ingrained, thus providing the most benefits possible. Early and consistent muscle stimulation and training will help your child reduce the effects of low tone.

Wait, There’s More
Hypotonia does not affect intellect. That’s good news. So say it to yourself loud and clear... the effects of my baby’s low tone have no bearing on his cognitive abilities. Your baby is smarter than you know.

Picture Credit
TUC's Kimani

If you have pictures of your baby under the age of two that you would like to share for use on this blog, tell me. I will visit you and let you know what I need for upcoming posts.

Supplements, Should We?

2009-05-06T07:00:00.001-04:00

Right up front let me say that no amount of supplements is going to "fix" your baby’s Down syndrome. That said, can they help your baby be all he can be?

NuTriVene - D Supplements
The Trisomy 21 Research Foundation recommends a daily set of supplements for people with Down syndrome. These supplements can be given to infants. When you google the foundation you will see that it seems to exist only to support the NuTriVene online company that sells the recommended supplements. This in itself doesn’t make the product bogus but it does make one question the foundation’s recommendations. After all, they are self-serving.

The NuTriVene website does have a page with some interesting research about the effects of an extra 21st chromosome on free radicals and proteins in the body. How much of this research can be independently supported elsewhere? Um, I couldn’t find much. Because it is a supplement, it doesn’t need FDA approval and the FDA site has zippo information about it. But, then again, the FDA doesn’t say anything about Flinstones either.

Taking a Chance
I grew up on vitamins, cod liver oil, and anything else my mom believed was healthy for me. So after some prompting from her, which I overtly rejected, I secretly popped for the $56 powdered stuff and tried it out.

Ok, now I hear some of you drawing in your breath, and thinking loudly, "How could she give her baby some who-knows-what concoction?" On all other counts, I am an organic ds.mama and nothing questionable goes in or on my babies. However, my youngest baby, who has Down syndrome, spent 16 weeks at birth in the hospital and you should have seen the stuff the medical community gave her. Drugs upon drugs, intravenous plastic tubing, iron supplements, and conventional creams and baby care items. They even tried to feed her corn oil but I stamped my foot down on that one. After all that, I figured what’s one more thing?

The Process
I measure a little less than the recommended amount of the orange powder (still wary, I guess) into about 2 ml of baby formula and suck it up into an oral syringe. Getting it into her is tricky and I do it on her changing table with a washable mat under her. I do this when she is wearing her birthday suit because the supplement leaves bright orange stains on any material. I squirt the awful tasting stuff (at least I thought so) into her cheek pocket a tiny bit at a time. She doesn’t complain.

The Fuzzy Results
After a couple weeks of this, my mom (who I hadn’t told yet) asked me if I was doing something new because my daughter was "so alert" and seemed to be progressing faster. This was hardly a scientific study but it was a hmm... moment. Since I started Omega 3 oil (more on that another day) at the same time, I can’t say one or the other was responsible for any perceived results.

I can say that my daughter left the hospital at 16 weeks old, after major heart surgery, not even able to hold her own head up or reach for a toy. She had also been sick with multiple bacterial infections in the hospital. She made it through last winter with no ear infections, no bacterial infections, no respiratory infections, nothing but an occasional cold. There are lots of other factors that can account for her good health and strong development since then. She is primarily breastfed, she had a visiting nurse administer the RSV vaccine every month, I am a Purell junkie (16 weeks in NICU/PICU will do that to you), she has the benefit of wonderful Early Intervention therapists, and her heart fix was perfect.

Still, it’s possible the supplement is beneficial to her. So, I give it to her whenever I remember and have the energy for the mixing, delivery, and clean-up process.

Your Turn
Am I the only mom out here using this stuff? If you have used it, can you comment on your experience with it, good or bad?

Read Beth's post: Targeted Nutritional Intervention--Vitamins

DS Bloggers at Your Service

2009-05-03T18:44:00.001-04:00

If you’ve just had a baby, you may not have time to hang out on the web and leisurely search for blogs about Down syndrome.

Me, well, I did have time on my hands as I waited for my daughter to get through 16 weeks in the hospital, but it never occurred to me that there might be a Down syndrome blogging community. We did have lots of caring friends and strangers dropping off phone numbers for local Down syndrome groups and families willing to be contacted. But, being in the hospital everyday, we didn’t have the energy or the free time for face-to-face relationships.

Once we got home, I felt very much alone. Like any Internet junkie, I hit the web. And there she was, Ella Grace with the Pretty Face dancing around in a video. I sat mesmerized watching this little girl with Down syndrome shaking her booty. I was so encouraged by it that I made my husband watch it too.

After clicking around her blogroll and many others, I came across Jaxson’s Fight. When I spotted his hospital picture in the upper left of the blog header, I knew we were not alone with the agony we had faced in those 16 weeks of hospitalization.

Then I found Little Miss E and saw the Traveling Afghan project get off the ground. I realized that together we can turn this online community into a family of sorts where we can share goodies, information, or even vacation visits.

And so, Down Syndrome New Mama has to have a blogroll... right? Of course it does! I could go out and scoop you guys up, and list you willy-nilly but I thought it would be nicer to categorize the blogs. That way, newcomers can find blogs where they share similar experiences, and blogs where they don’t.

Here are the categories. (If your blog fits into more than one category, pick your preference.)

The Designer Genes Club
If your blog doesn’t fit in any of the following categories, or if it does but you never post about anything related to it, please choose this blogroll.

Double Trouble and Twice the Blessing
If you have more than one child with Down syndrome please pick this blogroll.

It’s a Small World After All
This category is for families with ethnically diverse backgrounds and those raising children with Down syndrome across the globe.

Sweethearts & Fighters
If your child has gone through (or is facing) heart surgery or any other major surgery, please pick this blogroll. This list is also for those out there who are fighting various medical issues on an ongoing basis.

The Chosen Ones
If you adopted or are in the process of adopting a child with Down syndrome, please pick this blogroll.

The Future Is Now
If you are an adult or a teen blogger with Down syndrome, please choose this category. Also pick this blogroll if you are a parent or sibling who blogs on behalf of a teenager or an adult with Ds.

Projects & Resources
Blogs that are dedicated to projects, like the Traveling Afghan project, or are a Down syndrome resource blog, like Down Syndrome New Mama, should choose this blogroll.

How You Get Listed
You can either put your blog address and selected category in a comment on this post, or email it to me. My email address is available in my profile. If your blog or your baby is a newborn (or newly adopted), please let me know so that I can highlight you with a "birth" announcement.

Ok guys, bring ‘em on!

NICU Tour

2009-05-01T19:39:00.001-04:00

Many a baby with Down syndrome will tour the Neonatal Intensive Care Unit (NICU), even if only for evaluation and observation. That means you will get to spend some time there too.

What Your Baby Might Look Like in the NICU

Evaluating your baby might call for a series of tests and monitoring that will require wires and tubes that are attached in various ways to your infant. It can be pretty daunting to see your baby this way, and your post-delivery hormones won’t help. Here is a picture of what my daughter looked like the first time I saw her there. (Click on it for a large view.) I burst into tears. I will explain below what all the attachments are.

Some newborns have difficulty maintaining body temperature, so the NICU staff may place the baby in an open metal and Plexiglas bassinet that has a heater above it. To properly monitor body temperature, the baby is naked save for a diaper, and a tiny thermometer is stuck to the baby’s chest or stomach area. That is the gold circle on my daughter’s tummy.

Oxygen (O2) support is provided for a baby who is not maintaining the correct O2 saturation. There are several types of O2 support but in this picture you see a high-flow O2 nose cannula. To continuously monitor oxygen saturation levels, a tiny monitor inside a band-aid type material is placed against the infant’s foot or hand. It is then wrapped again in stronger material which you can see on my daughter’s left foot.

Our hospital’s better-safe-than-sorry practices required that our baby receive intravenous antibiotics until a blood test confirmed that no bacterial infection was present. This is what you see wrapped in tape on her right hand.

This is a good time to mention that general hospital staff are very quick to react to neonatologists’ and NICU nurses’ requests, so test results and specialists appear in record time. (Not always so in PICU, but that is another post.)

It is important to monitor the baby’s heart rate and this is done by sticking small monitors on the baby’s chest area. These are the little white and blue stickers on either side of my baby’s chest.

What you do not see pictured here is a nasogastric (NG) feeding tube that may be placed in your baby’s nose and the bili (spa) lights that might be placed around your child if his bilirubin levels are too high (the cause of jaundice.)

With numerous monitors attached to your baby, you can expect to hear them sound off every now and then, usually for no bad reason. If the O2 saturation monitor isn’t tight against your baby’s hand or foot, it will sound an alarm. If your baby wriggles around and loses a heart monitor sticker, you will hear an alarm. If you are holding your baby away from the bassinet, the temperature monitor might complain loudly. You will get used to these bells and eventually stop the mini panic attacks every time you hear them.

While all of this looks scary and overwhelming, none of it is painful (ok, except that initial IV prick) and none of it indicates that there is anything wrong with your baby.

Who You Will and May Meet in the NICU

Neonatologist - This doctor is specially trained to evaluate and treat newborns’ medical needs. In addition, neonatologists are experts in using the equipment that is designed specifically for the tiniest patients. There will be a neonatologist in or nearby the NICU at all times. (Again, not true with the PICU equivalent, but that’s another post.)

NICU Nurses - These nurses are specially trained to provide excellent medical care to newborns. They will provide general care to your baby, administer any necessary medication, and monitor vital signs. Along with caring for your baby, they will provide care, support and education to you as necessary. If your baby will be in the NICU for more than a couple of days, a primary nurse may be assigned to him. This nurse will make it her business to know everything that goes on with your baby. She can tell you how much he ate, peed, and slept today, as well as any changes in medications or other medical updates. A good primary nurse will get to know your child’s rhythms and can spot trouble before anyone else does.

Your Pediatrician - Your baby’s pediatrician will likely do rounds at the hospital and will check in to see how your baby is progressing. While your baby is in the NICU, the pediatrician does not call the shots but she can make suggestions or provide you with explanations of (read "decode") what the neonatologist may have already told you.

Respiratory Therapists - NICU respiratory therapists will handle all aspects of your baby’s O2 support to ensure the doctors orders are carried out to specification. They will drop by every few hours to check the equipment and your baby’s breathing.

Specialists - Any number of specialized physicians may stop in to check over your baby. We were visited by cardiologists, pediatric surgeons, our daughter’s heart surgeon, a gastrointestinal (GI) doctor, and many more.

Social Worker - A hospital social worker will stop by to see you in your recovery room or in the NICU to give you information about local Down syndrome groups, Medicaid, SSI, and many more things you will probably not be ready to hear (not because the information is bad but because things are already mind-boggling, and remember, those hormones aren’t helping.)

PCAs - Personal Care Assistants - otherwise known as "baby rockers" are sometimes called in by a busy nurse to soothe a crying baby whose mother isn’t readily available. PCAs provide only non-medical care in the NICU and you can request that they not be placed with your baby, if for any reason you prefer that.

NICU Pros and Cons

Most hospitals pride themselves on their well-staffed, state-of-the-art NICUs, so you can be assured that your baby is receiving the best care the hospital has to offer. The staff can be very knowledgeable and encouraging, and you may find it helpful to have this much support as you figure out your newborn.

Some hard parts about having your baby in the NICU would be that there is very little privacy in the NICU due to the setup (which is designed so that the nurses can see every baby at all times.) It can be frustrating and difficult to breastfeed your baby there even with a privacy screen that a nurse will set up for you. If a baby nearby yours is having a procedure, you may be asked to leave the NICU for a while. Visitors are limited and in some NICUs, children under a certain age are not allowed in at all. Once your baby enters the NICU, he may have to prove he can eat a designated amount of milk or formula every three hours before he can be discharged. Not being able to hold and snuggle your baby without a bunch of stuff attached just plain sucks. And my personal worst thing about NICU was being discharged from the hospital before my baby and having to go home without her. The separation was painful and I felt as though I had no say over my own newborn child.

Doing time in the NICU can be tough, but remember it is not forever. You are strong, and you and your baby will get through it.

Ten Toys Your Baby Wants

2009-04-29T22:19:00.001-04:00

A baby with Down syndrome enjoys toys just as much as any other baby. But which toys are best-suited for your newborn? Here is my list of favorites and why...

#1 Bright Starts “Rattle and Shake Barbell” Rattle

The textured twisty handle is easy to grasp and hold onto. A newborn’s arm-waving reflex will produce instant auditory feedback as well as lots to look at with the tiny beads shaking around. One side has a mirror behind the beads for added viewing excitement. It is light-weight so even my low-tone, cardiac baby could play with it. $1.99 at Walmart.

#2 Wrist Rattles

Babies with Down syndrome at some point notice their hands and then, for some, the obsession with them begins. They will hold up a hand as if to admire an imaginary manicure and the staring goes on for quite some time if not interrupted. Wrist rattles are a great distraction for hand-watchers. $4.95 at http://www.babyearth.com./

#3 Oball

The oball is one my daughter’s super favorite toys. It comes in a rattle version as well...

This light-weight ball has plenty of places to grab and is fun to mouth. When tethered with links a baby will have lots of fun watching it roll away and retrieving it. Plain Oball $3.99 at Target, Oball rattle $9 at http://www.playworks.net/first-toys.html.

#4 Bright Starts Lots of Links

Get a couple packs of these. You can use them to attach other toys to the carseat, swing, playgym, etc. The links themselves are brightly colored or highly contrasting, and are textured. Your baby will love holding them, looking at them, and mouthing and teething on them. The textures are great for oral stimulation and getting your baby used to different feelings in his mouth. $4.99 at http://www.toysrus.com/

#5 Infantino Shake-a-Tune Infant Toy

This rattle gives lots of return on effort. It lights up and plays a short tune when jiggled. The edges feature textured plastic for sensory and oral stimulation. It has thin handles for easy grabbing. There is also an on/off switch to save the 3 replaceable L1154 button cell batteries and keep baby from accidentally waking herself up from a nap! $7.99 at Target.

#6 Infantino Foot Rattles

Babies with Down syndrome can be wonderfully flexible and quite wriggly. That makes these cute foot rattles very entertaining for your baby. They are fun to look at and listen to, and encourage baby to exercise her legs and feet. $5.99 at http://www.toysrus.com/

#7 Tug & Giggle Friends

This toy giggles and vibrates when you pull the tab. Babies with Down syndrome like the feel of the vibrations and it wakes up their muscles. For little ones, you have to do the pulling but an older baby will have the fun of doing it himself and learning cause and effect in the process. The batteries are replaceable. I bought my baby’s at Walmart for about $5 but if you can’t get there, you can find it online at http://www.beyondplay.com/ for $9.95.

#8 Sassy Me in the Mirror Crib Toy

You can set this mirror up on a playmat, tie it to the crib, or stand it up on a table. The mirror border has great contrast and fun stuff to touch and pull on. But who baby sees in the mirror is super for self-awareness. It comes with a surprise bonus of having an mp3 player jack in the back so your baby can listen to her favorite songs or even recordings of your voice (or hers!) while checking herself out. It is very light-weight but can be easily secured using the ties. $14.99 at Target.

#9 Chick-Itas

This little Chick-Ita is light-weight and easy to hold. It sounds like a genuine maraca when baby shakes it. It will be your baby’s first real musical instrument. The Beyond Play website recommends it for three years old and up, probably because if you leave your baby unattended there is a risk of him whacking himself in the head with it. My child’s physical therapist brought it to us on her first visit and my baby loved it. I figured she has just as much chance of smacking herself with any other rattle, so why not this one? 2 for $7.95 at http://www.beyondplay.com/.

#10 Neurosmith Sunshine Symphony

I saved my daugher’s absolute favorite toy for last. This toy motivates her to reach, stretch, roll, etc. It is a physical therapist’s dream. I’ll give you the official description of it, "This huggable, plush activity toy plays beautiful classical music while sparkling lights flash. Features four musical compositions activated by a simple touch and can also be used in a long-play lullaby mode. Fun tactile activities include a crinkle, squeak, beads and teether." It takes three AAA batteries and has two volume settings. It is easy to activate with even a gentle touch from baby. It is very durable, too. We’ve had it six years through three babies, but my Down syndrome baby girl adores this toy more than her siblings did! $28.95 at http://www.amazon.com/.

Your Turn

So that's my list. How about some of you other ds mommies comment about your infants' favorite toys?

Other People's Favorites
Check out Lucy's (Teeny Tiny Hopkins) favorite toys

Stage Not Age

2009-04-21T11:26:00.001-04:00

One of the first things to get over when you have a newborn with Down syndrome is looking for milestones based on your baby’s age. We have all heard stories about so-and-so’s baby who held his head up before the placenta was delivered and walked at six months old. Most of us have read some form of a What to Expect book and have a general idea of how old a baby is when certain things happen. Flush that knowledge from your mind and try not to pay too much attention to Mrs. So-and-so.

Babies with Down syndrome develop along the same path as a typical baby, meaning they reach most milestones in developmental order but they do it on their own schedule. They also have a lot more milestones to celebrate. Who knew there were a zillion sensory and gross-motor skills that are reached before a baby rolls over? You are going to need a whole bunch more cute stickers for that First Year Calendar than the measly 10 that came with it.

There is an amazingly detailed resource out there for setting expectations for your baby’s development and tracking your child’s progress from birth through about the first five years. It is called the The Developmental Journal for Babies and Children with Down Syndrome. It is put out by the English government program, Early Support. The material is provided for free online in pdf format. The hardcopy journal can be ordered and shipped free anywhere in the UK just by requesting it. I had my copy shipped to a friend’s mother and got it once my friend returned to the US after a visit home to England. When you see the journal you’ll realize that this group has put a ton of research and effort into this project, and you will be thankful to the Brits for this contribution to your resource arsenal.

Enjoy your baby's stages because while they sometimes seem like they'll last forever, they won't. And, make sure you go get your journal!