An eXtra Blessing~ Shameless Self Promotion

When Dianna Lee was born four years ago with an extra chromosome with her 21st set, I was a bit overwhelmed by one thought in particular.  That thought was that we would be spending everyday in some type of therapy or at some doctor's office or having someone in our home teaching me how to best help Dianna.

I was so wrong.  Really, caring for Dianna and helping her has been much like helping my other children.  Although she has needed some extra help with motor skills and now especially speech.  BUT, most of our days are spent at home together.  We read books, do flashcards to help with vocabulary and enunciation, and we play outside.  Right now she is working on her leg muscles by learning to pedal her new-to-her trike (Found on craigslist, Love!).

She refuses to get off her bike each time we are outside.

That being said, I do spend some extra time with her and she has had more doctor appointments than her siblings, but not a lot more.  This past October she went through her second open heart surgery for a COMPLETE repair for AVSD.  She recovered like a champ!  She was climbing out of the hospital bed a couple hours after surgery, and sitting up looking at her favorite books the next day.

Less than 24 hours after her 2nd open heart surgery to repair a leaking valve from original AVSD.

On to the point of this post, my shameless self promotion.  I'm a bit of a paradox.  I prefer to stay in my own corner, quietly observing.  But, invited into some other space, I may take over.  When it comes to my Etsy shop, an eXtra blessing, I'm still stuck in my corner.

I began selling handmade crocheted and sewn items on Etsy shortly after Dianna was born hoping to make enough to purchase materials and (if enough) some extra therapies or classes for her.  I'm starting anew and hoping to gain lots and lots of exposure (some orders, too).

Dianna modeling a bow beret, which has been a best seller since starting an eXtra blessing.

So I am asking for help.  How can you help?  In any of the following ways:

1.  Become a Fan of an eXtra blessing.
On Etsy (shop updates, new items)
On Facebook (exclusive coupons, adorable updates on Dianna, helpful links)
On Instagram (exclusive coupons, new items, most adorable pictures of Dianna)

2.  Be a Customer
It may not always be easy to make something for a friend or family member with a little one.  Here is your chance to get a beautiful handmade gift for babies, toddlers and children.  Have a look and encourage your friends, too!

3.  Professional Photo Help
If you are a professional photographer who works with newborns and babies, please get in touch with me!  I would love to swap hats as photo props for quality pictures I can use in advertising items in the shop.  Dianna has grown, so I no longer have an adorable baby model to use whenever I need.  Just shoot me an email (sheilathoburn@gmail.com).

Dianna models toddler and child sized items for me now, but my shop features baby items, too.

If you are spreading the word about an eXtra blessing, you may want to know the story behind the name.  My daughter was born with an extra chromosome, Trisomy 21, or more commonly called Down syndrome.  Since her birth, we have seen this extra chromosome as an extra blessing.  It is not a cause of problems for her or for us.  It has helped us to see life in a different way.  It has helped us to see that what some call disabilities are not.  She is our extra blessing.

Thank you in advance for your support!  And to get you started, please use this code to save 20% on your first order: APRILSHOWERS.  Coupon good through June 30, 2016.

Fingerplays~ Building Fine Motor Skills and Vocabulary

It doesn't take an expert to know that children respond to music.  Music captures their attention.  Music encourages children to move.  But music can do so much more than that.  I've learned through my daughter who has Trisomy 21 {Down syndrome}.  I have specifically seen that through music, more exactly fingerplays, she has strengthened and refined her fine motor skills, been encouraged to communicate and expanded her vocabulary.  All while having fun within a few minutes each day.

Shortly after Dianna was born, I began to read about possible learning difficulties related to Trisomy 21 {T21}.  Somewhere I read a suggestion that children with T21 and those with Autism may be musical learners.  What is a musical learner?  Many are familiar with visual, kinesthetic and auditory learning.  Auditory learners use their sense of hearing more to learn so can listen to a lecture to learn.  Visual learners would do better with charts and graphs, and so on.  This is a very simplified explanation.

There has been much research and understanding of other styles of learning {for more read about the theory of multiple intelligences, especially Thomas Anderson's In Their Own Way}, eight or nine other styles actually.  One of them is a musical or aural learner.  Musical learners enjoy music and varied sounds; they notice music even if faintly playing.  One day while playing in the basement with Dianna, she stopped and looked up.  Something had caught her attention.  It was my cell phone which was upstairs.  I would not have noticed if she had not.

Around the time Dianna turned 1 {April 2013}, I began doing fingerplays and singing songs with her to improve her fine motor skills.  It worked wonderfully!  Almost instantly her pincer grasp improved {grasping between forefinger and thumb}.  She quickly more able to pick up smaller pieces of food for self feeding.

The first song we started with was 'The Itsy~Bitsy Spider' {or as most people say Eensy~Weensy}.  I began to recognize her requests to sing and play this song as she would put her finger tips together and twist them back and forth.  She was so excited I knew what she wanted.  This simple song was not only helping her use her fingers more precisely, it was allowing her to communicate quite effectively!

Dianna loves to sing as she makes actions for Itsy~Bitsy Spider.

We were both so excited.  Once I noticed this, I decided to do more.  I had a copy of Wee Sing Children's Songs and Fingerplays, which I had purchased years before and had never much used.  I pulled it out and decided on a few other songs with different motions to teach to myself and Dianna.  First we listened to the cd and I noticed which songs she seemed to enjoy more.  The great thing about the Wee Sing cd is that it comes with a book of lyrics and actions to each song.  I also like to add some sign language to our fingerplays; just a few signs that we are learning to help reinforce them.

The next two songs we learned where 'Hickory Dickory Dock' and 'Little Monkeys Jumping on the Bed'.  She loves Little Monkeys!  Another thing I began to notice was that she was trying to say some of the words that went along with the actions.  She began to say 'bump' whenever she would tap her head as I sang 'One fell off and bumped his head'.  Now she says it when she bumps other things accidentally, including her own head.

Dianna using one finger to 'jump' up and down on her hand as we sing 'one little monkey jumping on the bed . . . '

Then she takes her finger and shakes it back and forth as she does her head side to side while we sing 'no more monkeys jumping on that bed!'

She and I continue to learn new songs and actions.  Our next step is learning transition songs, little chants or rhymes to help lessen the distress of ending one activity and moving on to another.  We're learning 'Little Girl, Ready for Bed' to help her transition to bed time without so much protesting.  The words and actions can be found at Songs for Teaching, along with many, many, many other songs which are listed by topic.

I'm so excited to have a simple and fun way to encourage Dianna to learn and work.  I'm certain you'll find that these little songs and actions are beneficial, too, if you just try one.  It only takes a few minutes of the day.  We started with Itsy~Bitsly Spider because it was one I know and didn't have to learn.  Just start with what you know.  And add to it.  It will be fun!

She always claps enthusiastically at the end of a song.

Moroccan Style Breakfast Rice

I am the youngest of five children.  My oldest sister, who was twelve years older than I, cared for me like I was her baby doll.  Even when she had her own small apartment, she would have me come over throughout the week.  She had married a man from Morocco when she was young, about 19 or 20.  My memories of him are strange as he was always kind to me, but I knew he was not so to my sister.  Although I have terribly sad memories of her marriage to him, I have some quite fond memories, too.  He taught her to make some amazing Moroccan food. She would have a dish that was new to me each time I stayed with her.

One dish I grew to know and look for was a type of rice pudding she made for breakfast.  It was similar to oatmeal or cream of wheat rather than a dessert.  I would wake to find her in the kitchen stirring a pot of simmering rice that would soon be ready for me to eat.  Bites of the sweet rice helped me get through last minute homework or studies for the day to come.

She never taught me to make this dish and she is no longer here to teach me, but my memories of it are pretty strong.  I looked for recipes for Moroccan rice and found some that I changed to be true to my memories.  I am fairly certain she didn't make her rice with almond milk but perhaps she did make her own or added some ground almonds to the cooking rice.  I do feel that the almond milk is essential to the flavor of this rice as I remember it.

Over all it is a rather healthy dish.  The almond milk only has 40 calories per cup and it doesn't have near the amount of fat that cow's milk does.  Almond milk is full of vitamins and minerals including zinc and calcium.  The almond milk really adds a distinct flavor but one that is not overwhelmingly different.  As it cooks, the rice really sweetens this on its own so I prefer to use a fourth cup of sugar instead of more.  I recommend anywhere between 1/4 and 1/3 cup in the recipe.  You can make it with less and add more after it has cooked if you like it sweeter.

The rice takes about an hour to make so I will make it the night before.  It easily reheats on the stove in the morning.  It thickens even more as it gets cold, so I add some more almond milk to the rice when I reheat it.  It takes just about 10 minutes to get really hot.  Only a small serving, about half cup, is quite filling but my older children will eat about one cup for breakfast.

This is just a note, not a paid advertisement.  I recently started uses Califia Farms almond milk.  It is in the refrigerator section of the grocery and is so creamy, not at all gritty.  And, I love the container it comes in.

Moroccan Style Breakfast Rice

1 c jasmine rice

2 c water

2 tbsp butter

4 c almond milk

1/4-1/3 c sugar

2 cinnamon sticks {each about 3", or 1 longer stick}

2 tsp vanilla

dash of ground nutmeg

Rinse rice well and drain in a mesh sieve.  Place rice and 2 cups of water in a large pot.  Bring to a simmer over medium-low heat; reduce heat to low and continue to simmer, uncovered for 10~15 minutes or until water is mostly absorbed.  The rice will be very creamy.

Add butter, almond milk, sugar and cinnamon stick.  Bring to a boil and reduce heat to low, simmering uncovered for 25-35 minutes, until the pudding has thickened and some of the milk has been cooked off.  Remove from heat.  Remove cinnamon sticks.  Stir in vanilla and transfer to serving bowls.  Let set in bowls.  Garnish with a dash of nutmeg and serve warm or room temperature.  Pudding thickens as it sets.  Makes about 6 cups of breakfast rice.

My little girl is 21 months now and working hard to walk on her own.  Her therapy sessions cause a lot of sweat and often tears.  Her therapist notes that she can get tired easily but pushes as much as she can.  I've noticed that she does much better with therapy when she's had a hearty meal the night before.  I've started giving her some rice pudding the at dinner time.  She loves the creamy and bumpy texture as well as the sweetness that comes from the starch in the jasmine rice.  I'm hoping she'll be off and running in no time as she loves following her big brother around the house.

Beautiful and Wonderful ~ Having a Child with Down Syndrome

Why I Share Dianna's Story
I feel that I have always been a compassionate person, not judging or belittling others for the way they look or how they may act or for how someone may be different than I am or different from what is typical. That being said, I have never really paid much attention to those who may be considered different. When I gave birth to my daughter Dianna in April 2012, I knew as soon as I saw her that she was different from my other babies. I knew from looking at her that she has Down syndrome. This did not cause me to love her less, but I had not been expecting this and I didn't know what it would mean for her or for me.

Since having Dianna, I have learned much. I researhced to find out how I could best help her. I have come across many sites that help to remove stigma of Down syndrome, to teach about what it is and what it is not. I find these sites encouraging and love reading about others' stories.  I especially enjoy reading stories about families who did not know about their baby's diagnosis until he was born because that was my situation.  I try to see if there were any similarities. I realized that I'm interested in these because I gave birth to a baby who has Trisomy 21 (commonly called Down syndrome).  My hope is that I can be of help and encouragement to someone who has given birth to a baby with Down syndrome. I don't feel my purpose is to persuade someone to keep her baby, but rather to her encourage her in taking care of her baby.

Dianna Lee, 8 months

Pregnancy and Birth
At the beginning of August 2011 I had just flown across country with my family including my 10 month old son. My husband and I had decided to take a family vacation while we helped two of our older children get settled into college. I remember being very tired. I passed it off thinking I was just exerting myself more than usual. For example hiking up 3,600 foot high hill while carrying my 10 month old in a front pack on a hot August afternoon.

About two weeks after returning home from our trip a friend sent me a message asking if I was pregnant. She had a dream that I was pregnant. I still have the message, and it's funny looking back at it. I assured her I would know if I was pregnant, that I was still nursing my little boy even at night so I really doubted I was pregnant.

I had an early sonogram to determine a due date which showed that I was about 13 weeks along. My care progressed normally and I declined prenatal testing not wanting a risk to my baby and knowing that we would not terminate a pregnancy.

At twenty weeks I had a routine sonogram. There were two technicians that took an abnormally long time to perform the test. I attributed the length of the exam to one of the techs being a trainee. They were able to tell me that I was having a girl, which I completely doubted, but they also said I needed to have another sonogram in a month or so. They could not get a good enough look at the baby's heart or face. They gave me pictures of my baby which looked fine to me. I even marveled at the size of my little girl's face, already so chubby. A second sonogram a month later showed all things were fine. I went home with a few more pictures of my baby and another confirmation that I was carrying a little girl.

The pregnancy seemed uneventful, though it was an uncomfortable and very tiring pregnancy.  I was looking forward to having more energy in my second trimester, but it never came. I waited and waited, and I was just so, so tired. I went into my third trimester not feeling any different from my second.

I felt as if the baby was small, like I had just a little beach ball in my belly. She certainly felt smaller than the nine pound babies I previously had. I attributed a smaller belly to not gaining much weight, which was another strange thing about the pregnancy since I really wasn't very active due to limited energy.

The week before Easter I did small things to prepare for the arrival of my little girl, things that weren't essential but I wanted done before she was born.  I wrapped small gifts for my older children so they would know I love them while my sister-in-law took care of them the day I was induced. My husband had plans to take our son, who would turn five the day after his baby sister was born, to the Lego store for his birthday. I had things prepared and planned and everything seemed to be going accordingly.

April 5 came with no baby, so we traveled to the hospital at 5 am to have labor induced.  At the hospital I had ivs placed to start a bit of pitocin to begin labor. It was working, slowly, but working. After a while I decided it would be fine for the doctor to break my water to get labor into full swing.  The labor had been routine but I was getting horrible headaches that would not go away and only relieved with ice packs.  At one point during labor the baby's heart rate dropped below 100 bpm. It stayed low for about 30 minutes. The doctor used an internal monitor at this time to get a more accurate reading. He had me move around to try to help the baby reposition and improve her heart rate. Just before he decided she needed to be delivered right away, her heart rate went back within normal range. And, within an hour she was born without need of a c-section.

About 4 days after birth, I had my first chance to get to feed her. I realized later that her face wouldn't always be so chubby. She was swollen from her body retaining fluid from her heart defect. She still has a cute, round face though.

I remember being worried about her because she wasn't crying. She did have meconium and a low oxygen level. The doctors wanted to get her off to the NICU for testing and oxygen treatment but would let me hold her briefly. As my ob handed my little girl {I couldn't believe it, a little girl} to me, I noticed some things about her. For one thing, she didn't look little at all. She looked like a football player! Massive cheeks and rolls on her upper body. I could hear the nurses guessing her weight. When we did get a weight, everyone was surprised she was only 7 lb 13 oz. But the one thing that struck me about her was how much skin she hat around the back of her neck. I didn't know the name of this until just a week ago {nuchal fold}, but it was a sign to me. I looked at my ob and said, "She has Down syndrome, doesn't she." And he being kind and gentle, yet I think afraid of disappointing me said, "I think so, but she is soooo beautiful." And she is.

Unfortunately, the rest of the day didn't go as I had planned either. Dianna was born shortly after 7 pm and within thirty minutes of her birth, she was whisked off to the NICU and I was whisked off to the OR for hemorrhaging. There was my husband all alone, without his little girl, without his wife. During a long time of not knowing about me, he learned that Dianna had a complete AV canal defect, meaning she had no wall from top to bottom separating her heart into four chambers and she only had one valve instead of two.  I remember a bit more than a week after the birth sitting and talking with him and realizing for the first time how lonely he must have been. It was a long night and I ended up in ICU and Dianna in NICU for a week. A time that is usually spent bonding and resting and taking care of an infant was spent in the hospital just struggling to get better, both of us.

Getting to Know Dianna
A week after she was born, we headed home. I could barely sit up and was still having severe headaches. Dianna was still jaundiced and had a severe heart defect but feeding very well {bottle, no nursing}. Thankfully my 20 year old daughter came home from college early to help. For the first four weeks she took care of baby Dianna, especially at night. I was worried that Dianna would not know I was her mother. I would sit and hold her often throughout the day or lay on the floor next took her while she took sunbaths so we had as much bonding time as possible.

Dianna has a bit more space between her big toe and second toe {see this post about Sandal Gap}.  I love her toes and she does too!

Once I began to feel better I did research on the internet and read books I ordered. I started to feel a bit overwhelmed, thinking there was so much to do and I just wouldn't have the energy or the time to do it. The best advice I received at this time was from my sister-in-law {who has a 25 year old son with Down syndrome}. She told me to just love Dianna. So I did. I would hold her and sing to her, I would rub her fat cheeks and rock her. And even though I loved her, my love for her grew exponentially.

As the first couple of months passed with visits to the cardiologist and pediatrician, and even one to the ER after an reflux and aspiration episode,  I spent time getting to know her. She loved {and still does} to hear singing. When she would try to cry or make sounds, I noticed she seemed to have a deeper voice than my other babies. She also would smile. From the first day she came home her face would break into a smile. Not just her mouth, but her whole face. I call her smiles, a whole face smile.

I say this is Dianna's typical face.  She smiles so much and uses her whole face to show how happy she is.  She is 7 months in this picture.

I learned she is like my other babies. She liked to watch her hands as she discovered she could control them. She is stubborn about what she wants and doesn't want to do. She is like her siblings in that she is different from them, she is unique.  They all have their own personality. They all will have wonderful blessings in their lives. And they will all have challenges to face.  We are just expecting certain challenges with Dianna, while the challenges for ourselves and our other children are unknown until they occur.

What Next?
There are many websites that are written to help raise awareness of Down syndrome. And there are some websites that offer personal stories and helpful advice. I hope to be of help to families who have given birth to a child or who have adopted a child with Down syndrome. I plan to continue to share fun activities and recipes that I make with my family. But I also plan to add some posts about what I have done with Dianna and what I have learned and found to be helpful. I started this blog to share with other moms and grandmas and families what we do as a family to enjoy life. What I do with Dianna is now a part of this.

I don't know how often I will post about her or other things {time certainly has gotten away from me}, but here are a few things I hope to share soon~
*At Home Therapy
*Helpful Toys and Baby Gadgets
*Health Concerns
*Cognitive Development
*More!

A sneak peak at one of my favorite {and Dianna's} toys, the Happy Apple.  They don't sell them in stores anymore, I don't know why.  But they can be found used, and a very limited new ones, on Amazon.

Until then here are some links to things I have found especially helpful.
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals
Baby Signing Time
Milestones Chart for Babies with Down Syndrome
Growth Chart for Babies with Down Syndrome

I have not been shielded from those with Down syndrome. I have a nephew (25 years old) and a niece (2 years old) and some friends who all have Down syndrome. I do have to admit since April of 2012 my attention to individuals with Trisomy 21 has changed.

When I see a young man in the grocery store, shopping by himself and calling his mom for advice, I think of Dianna and whether she will ever go grocery shopping by herself. When I see a young lady walking down the street, slowly and clumsily but happy~go~lucky, I wonder what Dianna will be like at her age. I am excited to see what the future holds for her and who she will become.

Sometimes I wonder if she will be like a 5 year old for a length of time. Don't misunderstand me.  With all of my other children I longed for that newborn stage to last and last.  With Dianna it lasted much longer.  In many ways I would like her to be little for a long time. Five-year-olds are perpetually curious and full of energy. They see the beauty and wonder in the simplest of things. They like to cuddle. They are endlessly forgiving. They are ever hopeful.

Some {perhaps most} who have a child with Down syndrome do not like to equate their child to the term Down syndrome. And I don't either in that I do not want someone to look at my daughter and think she is the definition of Down syndrome, that every person with Down syndrome is just like her. Nor do I want a person's idea of what Down syndrome is define who my daughter is for them. Considering that, I can honestly say that Dianna would not be Dianna if she did not have Down syndrome. I can not imagine her without it. Even in Heaven, I can't imagine that she would be more perfect without what we call Down syndrome. She is beautiful and she is completely wonderful.

Dianna has little flecks of white in her blue {for now} eyes.  I've read that these are called Brushfeild Spots.  I think they make her eyes even more beautiful.