When you have a baby, especially your first baby, you really need access to good information. Learning to feed your baby, obsessing over how many dirty diapers a day there are, figuring out which cry means what... we all go through it, and when we need help we have our moms, friends, books, the Internet, and a myriad of other resources. But the one thing we come fully equipped with is expectation. We know what babies look like. We have likely held a few, maybe helped out by babysitting, and we have certainly seen them everywhere.
What about when your baby is born with Down syndrome? Suddenly you realize you don’t know much about it and maybe you can’t even remember ever seeing a baby like yours. You might experience fearfulness and your previously held expectations may no longer apply. What you need is to see other babies, children, teens, adults... people with Down syndrome so that you can know right away that there is nothing to fear about your new love.
The International Down Syndrome Coalition has created a video, a compilation of awesomeness that I wish every new mom could see. Get ready for dancing, swimming, four-wheeling, rockin’ out, and a whole lotta beautiful...
Oh and all that other stuff that's good to know? Click around. It's here somewhere :-)
Showing posts with label prenatal need to know. Show all posts
Showing posts with label prenatal need to know. Show all posts
Thursday, March 28, 2013
Wednesday, June 16, 2010
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.
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.
Sunday, June 6, 2010
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.
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.
Monday, March 15, 2010
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
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
Monday, February 1, 2010
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.
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.
Tuesday, December 8, 2009
That’s What I Like About You
Back in October I posted “The Best Part,” a few thoughts about the good stuff that comes with Down syndrome. I asked you to tell me your favorite things and what a great response you gave. It was a wonderful reminder that people with Ds are unique and fabulous in so many ways.
Things We Love
People with Ds live in the moment... they have determination and pride. And we have pride for them as we celebrate their milestones. We have the pleasure of never-ending hugs & kisses... wherever at whatever age. People with Ds express uninhibited love & joy. They have a lovely innocence about them...
“I love the innocence. The fact that my son doesn't see jealousy or envy in others, doesn't fuss when someone takes one of his toys, doesn't try to take others things - he just accepts everyone and everything at face value. I love that.”(Karen)
As parents and loved ones, we have become part of a wonderful community, we have learned through self-introspection the value of life, and have developed a great appreciation for the little things. We have learned to slow down and enjoy what is, and we have experienced personal growth... becoming advocates and cultivating an acute empathy for others...
“Having a child who is 'different' forced me to break down stereotypes and prejudices that I never knew I had. It makes me want to defend and advocate all of those in our society who are vulnerable and overlooked.” (Stephanie)
People with Ds have extraordinary physical characteristics... a chunky kissable neck, amazingly talented toes, stunningly beautiful brushfield spots in their eyes, and delicate facial features. They are sincere, caring, and non-judgemental of others. They are charitable, kind, and altruistic...
“My Favorite thing about DS is that having Ricki taught me to accept and love the positive things in everyone, and to avoid dwelling on the negative. I then applied this to my (then) teens. It was beneficial for all of us.” (Ricki’s mom)
Many babies with Ds give us the opportunity to enjoy an extended infancy, and a baby who sleeps through the night. They reward us daily with a pure, abundant, and uncomplicated love. They are easygoing...
“I love how cuddly Miss B is and how easy she is to console. When she is crying, pretty much all you have to do is pick her up and snuggle her in, and she's happy again. We've had very few of those “Is it your diaper? Are you hungry? Are you hurt? Are you sick? Is it gas? Are you hot? Are you cold? Why are you crying and why won't you stop??!!!??” moments with Miss Banana. Gotta love that too!” (Carrie)
People with Ds have the most beautiful genuine smiles that they give freely to all...and the cutest protest pouts you ever did see...
“I love Maddie's smile...she smiles with her whole body...her hugs are big, warm, and so calming...and I love how when she does not like something she lets us know with the greatest wrinkled/scrunched face...she is priceless!”(Chromosomally Enhanced)
I’ve already said that my favorite part of Ds so far is the extension of the trip through babyland but I want to also mention how much I love it that my daughter plays with her toys... really plays with them. With my typical kids, buying toys (other than Legos) was a waste of money... there was zero interest in toys geared for babies. With Summer I have the pleasure of watching her gradually figure out how each toy works and then actually playing with it over and over.
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 :-)
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 :-)
Monday, September 7, 2009
Mama Bear, Mama Bear, What Do You See?
Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.
Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.
Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.
Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.
Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.
Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)
Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.
Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.
Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot. Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.
Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.
Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.
So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.
Picture credits: Kacey's daughter Ella Grace, and Lisa's son Finnian
Sunday, August 2, 2009
Prenatal Diagnosis of Down Syndrome?
What Other Mothers Say
Congratulations! You are blessed! --Jill
...everytime I think of the what ifs I also think what I would be missing if she didn't have DS. You know Holland is absolutely breathtaking. =) --Laiken’s Mother
There may be struggles but you will never find regrets. The love you will have for this child will take your breath away. I never would have believed it myself. --Stephanie
But this sweet little baby has often brought so much peace to my heart that I never expected. As sweet as my other babies were, that is one thing I never remember feeling with them. That's why she is special to me and not because she has DS. --Chris
Our son with Ds is adopted and needs open heart surgery soon. No one said it would be easy, but I feel honored to be his mother. --Kristin
She shows me everyday what it means to not give up if you don't succeed the first time around. She has taught me patience and courage and to be proud of who I am and to enjoy the little things in life. -- Tasha
... this is just a baby- and you need to hold onto that no matter what other people say or feel. -- Nicole
This little life is not what you were expecting but everything will be alright. In fact, everything will be great! -- Sally
They are going to learn so much from this child. They are the lucky ones!! -- Amy
Give this child life and you will learn more about yourself than you ever dreamed there was to know. --Jen
More importantly, he will be a delight and will bless your life in so many ways. He will thoroughly charm everyone around him and I promise that you will be smitten when you first hold him in your arms. -- Tara
I know that I never could have had such a life change without my sweet boy. --Angela
You are meant for your baby. Your baby is meant for you. -- Ria
Read more of what moms say on this topic here and here.
Posts Written for Pregnant Parents
Chrystal: What Would You Say
Lisa: Open Letter to Parents Facing a Diagnosis of Down Syndrome
S: My advice for a new Down Syndrome family
Karyn: To Those With A Prenatal Diagnosis
And the Winner Is...
Stephanie of Our Daily Smiles. Email me to let me know which prize pack you are selecting.
Thank you to everybody that entered the giveaway. Your words matter and I am glad you shared them.
Picture Credits
From left to right, top to bottom:
Emilia of Our Daily Smiles
Finnian of Finnian’s Journey
Lily of A Walk In Lily’s Garden
Jacob of Our Jacob
Joey of Our Bundle of Joy
Leah of Everyday Elliott photographed by Melissa Jones Photography
A baby I can't wait to meet
Quinn of Quinn’s Crusaders
Ella Grace of Ella Grace with the Pretty Face
Charlie of Blessings and Glory
Playette of One More, More Than One
Max of Hang On Little Tomato
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