Goody Bag Winners

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

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

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...

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

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

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...

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?

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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.