31 for 21: Day One

October is National Down syndrome awareness month and I am going to attempt doing my second year of 31 for 21, a Down syndrome awareness blogging effort to post valuable information everyday in the month of October.

Id like to start off with something that I have heard on so many occasions and a comment that is the most recited phrase by people who encounter Vada and my family, it is that "Individuals with Down syndrome are always so happy and loving." 

While it's true that Vada is a happy girl and that she is easy going and loving as well, Vada, just like my older children and just like you and me, has all kinds of emotions and abilities. Down syndrome has not limited her emotions and behaviors or likes and dislikes.

Vada's nature is one of a person who is easy going and happy but let me show you just a handful of photos of some of the many faces Vada shares...

When she is sick, she is not happy. She tries to be in good spirits but sometimes a cold can get the best of her and she gets grumpy.

She has sass, or personality as her grandpa likes to call it.

She is a very determined little girl and often times she is very independent as well!

Even at the young age of two and a half years old Vada has "a look" that she gives when she is not fully satisfied with a situation. And there is no mistaking "the look".

Vada is creative.

She is outgoing. 

 She is goofy.

And she likes to pretend.

Vada is capable of learning and more importantly, she wants to learn.

She has a special relationship with each member in our family, distinct bonds that cant be replicated or broken.

And yes, she loves.

It's important to me that people look past Vada's diagnosis and see her for the person that she is. I know that initially this may seem like a hard thing for me to ask, Vada wears her diagnosis on her face. Down syndrome and individuals who have Down syndrome have been given a raw deal of discrimination and nastiness do to lack of knowledge in regards to their diagnosis but I promise you that if you can open your eyes, minds and hearts she will show you that she is just a little girl who is no different than other children.

31 for 21: Ear Infections and Tubes

Over this last month Vada has had a constant ear infection in her right ear as well as a runny nose, cough and pink eye-- in both eyes. She is currently on her third antibiotic and the doctor has already brought up the possibility of having tubes placed in her ears. He said that the next step, if the current antibiotic doesn't clear up the infection, we'll try antibiotic injections. If the shots do not clear up the infection, she will need to have tubes placed.

 I understand that this is a common issue in individuals who have Ds due to the anatomy of their ear canals and that the procedure itself is quick and easy but I don't want V to have to go through more surgeries. I am hoping that the medication she is on right now clears the infection up and that we can all go along our merry way but I doubt that that will be the case.

Ear infections and needing tubes placed is not just something that individuals who have Ds go through. Kiliegh, my middle daughter, had constant ear infections, more than Vada. She too had to have tubes placed in her ears and they did wonders! Which helps ease the tension of V having to have them. Truthfully, having had some pretty painful ear infections myself, I  would rather V have the tubes placed verses her constantly feeling the pain of the infections.

One good thing that came out of our trip to the doctors was that V had her weight and measurements done! She is still around twenty-eight to twenty-eight and a half inches long but she is now eighteen pounds! (She hadn't poo'd in a day --which she later did in the tub-- so her "real" weight may be slightly lower than the eighteen pounds.) That makes V twenty months old (almost), twenty-eight inches long and eighteen pounds. Which puts her just above the tenth percentile for her wight and a negative of about twenty-five percent for her height-- Still an ity-bity, but growing!

In case you were wondering, I used a growth chart that has been customized specifically for children who have Down syndrome when figuring out V's percentiles.

31 for 21: Good Books

I had twelve weeks of strict bed rest during my pregnancy with Vada. I did a lot of emotional preparation and soul searching during that period as well as a lot of reading. While I am setting out to spread awareness about Down syndrome I thought that I would share a few books that remains on my shelf to this day.

Please keep in mind that all children are different. They all have their select talents, purposes, attitudes and interests. Some of these books are generalized and don't necessarily show the individuality in each person. This is the case in most informational forms of reading but something I feel I should caution all readers on.

These two books are very similar and helpful in the area of possibilities or things to be aware of. My favorite thing about the books were the pictures of the children!

Just like the title says, this is a facts only read. Again, generalized but is full of what can be possible.

In conjunction with the Gifts books and Common Threads, this is my favorite (and one that I need to read again). It is a book with the goal of helping mother's to not loose sight of themselves and to find balance in their daily lives. You can only read so many informational books before they all seem to say the same things and you can only prepare so much and then you have to live life-- at least this is how I feel. More Than A Mom doesn't teach about Down syndrome but is more of a helper for mothers with children who have unique needs.

I ordered this for Jasmine to read and after I read it myself I decided that it may be a bit past Jasmines age (10 years, at the time). However, I would suggest this book to any teenager, adult and even expecting parent. It is informational as well as quick to read. A good place to start learning about Down syndrome.

A workbook, if you will, that helps parents who are raising a child with unique challenges. 

This book is filled with amazing pictures, stories, poems and quotes! It is fabulous!

These books are uplifting and emotional. True stories from real parents who happen to have a child who has Down syndrome. They are similar to the Chicken Soup series, only in my opinion, better!

So, have I left any good ones out? What books have you read that you would recommend pertaining to Down syndrome? Which one's were most helpful and which one's did you not like and why?

31 for 21: Sisters Who Love Their Sister

I have said it and wrote it on many occasions-- I am not the greatest of writers, nor am I a reporter. I talked with my husband yesterday about his memories and feelings of when we first received Vada's diagnosis. I asked him questions on his feeling's about that time in our lives. I think that together we did a pretty good job on the video. We where both nervous however, which sounds funny because it was only him and I doing the recording (oh, and little V) but we really wanted it to be truthful as well as helpful to whoever watched it.

The fact is, we grieved and hiding that truth isn't beneficial for anyone.

We received Vada's Down syndrome diagnosis prenatally. I agreed to the amniocentesis, finally, after declining on several different occasions only because at this particular moment that it was being offered to us again, I had just been told about our baby having serious heart and stomach conditions. The words defects, surgery, mental retardation, and death were thrown at me along with subtle suggestion to abort and in a moment of fear and confusion, I agreed to the test. If I were to go back I wouldn't have done the amniocentesis, the results didn't matter prior to knowing and they don't matter now.

I say that the positive Down syndrome results didn't matter but I still grieved. My husband, he grieved as well. Truthfully, when admitting that I grieved, I actually cringe a little inside. Admitting that I was mad and confused and scared about my daughters diagnosis makes me feel ashamed in myself. I know that these feeling are "acceptable" and also I know that many parents who were or are in similar situations have felt a lot of the same emotions that my family and I did. However, I still feel badly that I felt that way, because when I look at Vada, when I am holding her in my arms, when I hear her voice, when I watch her play, interact, talk, sign, eat, sleep, breath... I see perfection. Everything about her, to me, is wonderful and I know that my husband feels the same way that I do. If I could do anything differently about the video that Justin and I did yesterday I would have added all of this into it.

We all have to come to terms with the fact that we are not in control of our lives, not fully anyway. What we want, or think we want isn't always what we are going to get. I never would have asked for a child who has Down syndrome (because I knew nothing about Ds prior to Vada's birth) but now I wouldn't change a thing and as far as V goes, well, I love her beyond any form of measurement, her father loves her more than I think he ever thought he could love another being and our older girls, Jasmine and Kiliegh... they love her too.

Again, I know that I am not a reporter but my girls have humored me in answering some questions about their baby sister Vada, who happens to have Down syndrome... I will say now that Kiliegh said something that I didn't correct her on (and I am sure you'll catch it). I didn't need to correct her, I could tell that she caught it herself and later she fixed her mistake-- we are all learning.  (Don't forget to scroll to the bottom and pause the music before watching the video.)

31 for 21: A Father's Side on Down Syndrome

Justin is my love. He is my best friend. A father to all three of our children. He is the provider in our family. He is an amazing man. I often find myself looking at him in and wondering how I ever became so lucky to snag such an amazing guy.

Over the course of the last couple of days I have been keeping Justin updated on my posts. On Tuesday, I asked him if he would be willing to answer some questions about Vada and about Down syndrome--you know, so that I could share his side of things. At this point I thought that I would just write the questions and have him fill in the answers when he had a free moment at work.

Yesterday, after recording the girls answering their own questions relating to Down syndrome (which I will be sharing soon), I decided that this is also what I should be doing with Justin. I was nervous when asking him if I could record him answering the questions. I didn't want him to say "no", because I knew that hiding my disappoint would have been difficult for me to do and I wasn't trying to pressure him into this "interview".

Justin is a very outgoing person but this blogging business, just isn't his "thing". I that guess I shouldn't have been surprised when he did agree to do this for me. Positive Down syndrome awareness is important to him as well. I am grateful to be able to share a little of what my husband, Vada's father, thinks and feels when it comes to his daughter.

I didn't edit anything, just uploaded it to share "as is" and true. (Don't forget to scroll down and pause the music before watching the video--I always do.)

My husband, Justin and his thoughts and feelings about having a daughter who happens to have Down syndrome...

31 for 21: Vada's Team; Therapists and Friends-Pt.1

You have been introduced to "Team Vada", now let me introduce you to Vada's Team.

Yesterday was Vada's 6 month therapy review. Every six months we meet here in our home with all of Vada's therapist and we go over her progress, possible set backs, future goals and we set our new six month plan into action.

When you have a child who has Down syndrome or any form of special needs it is important to provide that child with every learning opportunity possible in order for them to successfully reach milestones and goals. To ensure this you MUST be willing to work with professionals in the areas where your child may need a little extra support and guidance.

Kim (second lady on the left), Vada's Physical Therapist (PT) has been working with Vada almost from the moment we brought Vada home. It may sound sad but besides Vada's sisters, Kim was Vada's first "friend". I however, do look at this as a sad thing. I am grateful that Kim is the kind and caring person that she is. Vada likes her and the two work well together and get a lot accomplished during their sessions.

The importance of Physical Therapy with infants and children who have Down syndrome is to help the child to learn to move his or hers body approprately. Children born with Down syndrome typically have some form of Hypotonia also known as low muscle tone.  With out Physical Therapy many children with Hypotonia will adjust their movements to compensate for their low muscle tone, which can also lead to the child walking in a way that is not postually correct. Therefore, it is of the utmost importance to have a Physical Therapist who is trained, experienced and knowledgeable in the distinct musculoskeletal differences of a child who has Down syndrome and of a child who does not.

Vada's second therapist, Sara (second lady from the right), is Vada's Feeding and Speech Therapist. Children who have Down syndrome may have smaller mouths making less room in their mouths for their tongue, in combinations with hypotonia a child may have different set backs and struggles when it comes to feeding and speech. Since eating and communication are an important part of everyone's daily lives it is important to work on different skills to make feeding and speaking easier.

When it comes to Speech therapy, people don't only communicate through speaking but also through facial expressions, gestures and sign language. Typically, all infants with and without Down syndrome learn to use one of the alternative methods before speaking. However, when is comes to children who have Down syndrome (typically) they tend to learn to be receptive much quicker than they learn to be expressive. Meaning a child or infant with Down syndrome will learn what you are saying and understand the meaning before they are able to communicate their own wants and needs.

Vada has a few words that she uses verbally but she has learned to do a couple of signs and  gestures, like turning her head away when she doesn't want something. Her receptive skills are amazing, she really seems to understand most of what I am telling her. As of recently I have noticed her getting more frustrated when she is trying to communicate with me. Therefore, I have decided to really focus on signing more. I am hoping to help her learn more signs quicker, so that she can communicate with us easier than she is now.

If you have a child with Down syndrome, more than likely he or she will need some form of speech therapy and that's okay. Its important to get the evaluation early on and to start the therapy as soon as recommended . Speech therapy for individuals with Down syndrome is a bit different than speech therapy for other reasons. For this reason, again, you need to make sure that the therapist you choose is knowledgeable  in "normal" or "typical" speech development patterns as well as speech development that happens in people who have Down syndrome.

On a side note, gross and fine motor skills are the first steps to developing good speech patterns as well as learning vocal language. It is important to have these forms of therapy going in conjunction with the speech therapy.

Feeding difficulties in individuals with Down syndrome may be caused by a number of reasons combined or one specific reason. Some individuals have sensory sensitivity issues, the motor skills may be delayed, there may be other medical issues that are causing the child to have set backs or the physical structure of the mouth may create some difficulties as well.

When I was pregnant I was told that Vada probably wouldn't be able to breastfeed. The doctors just assumed that she would have such poor muscle tone that she would be unable to figure it out. That theory in combination with her weak heart would make it next to impossible for her thrive. I didn't know much about Down syndrome at this point in my pregnancy but even at that moment I thought that they were full of poo! I was appalled that they hadn't even met my daughter and yet they had already wrote her capabilities off. It was complete nonsense to me.

When Vada was born, before she ever had heart surgery as soon as she was able to have "food",  I attempted to nurse her and she latched right on! I breastfed Vada until she was seventeen months old and she nursed like a champ! Maybe its true that not all babies who have Down syndrome will be able to breastfeed but you never know what your child is capable of unless try.

For Vada eating solid foods was an issue mainly because she only wanted to be breastfed. She had all of the skills that she needed to be a good solid food eater, only she wouldn't swallow her food. When I had my tonsillectomy, about two months ago, she had to go without being breastfed and since she would not take a bottle (never really would) she was kind of pushed into eating solid foods. Although she didn't need too much persuasion.

Tomorrow I will share a little about Occupational and developmental therapy. :)

31 for 21: Forms of Down Syndrome

The most common form of Down syndrome occurs either before or during conception, an "error" in cell division creates three copies of the 21st chromosome instead of the normal two.  Because of the third twenty-first chromosome, it is also known as Trisomy 21 (or T21 for short).  Any chromosome, or part of a chromosome, can be "triplicated" however, most of those "errors", do not allow a baby to make it to birth. Because of this, Trisomy21 is the most common genetic abnormality in live births. About 95% of people living with Down syndrome have T21. 

What many are unaware of is that there are two other forms of Down syndrome. 

1-2% of all people living with Down syndrome have a form called Mosaicism. In this type of Down syndrome the "error"in the separation of the twenty-first chromosome happens after fertilization. This causes the baby to have some cells with the typical amount of forty-six chromosomes and some cells with forty-seven; the extra being in the twenty-first chromosome. Because some cell are unaffected the child's abilities and capabilities may be greater than a child with the other two forms of Down syndrome. However, it depends on the ratio of the forty-six chromosomes to the forty-seven chromosomes.

The third form of Down syndrome is called Translocation. 3-4% of individuals who have Down syndrome have this form of it. Our Vada is one of those individuals. In this form of Down syndrome a piece of the twenty-first chromosome breaks off and reattaches itself elsewhere, usually onto the fourteenth chromosome. Translocation causes every cell to have an extra piece of the twenty-first cell. In Vada's case her extra piece practically reattached itself to its original strand. 


When a child is born with Translocation  it could mean that one of the parents is a carrier of a specific chromosomal material mater. Since I had two children prior to my marriage with Justin we knew that I was not a possibility. Parent who have the arranged chromosomal material will always produce a child who would have Down syndrome. To better prepare ourselves, my husband, Justin, had genetic testing done and after two very long weeks the test showed that he is not a carrier. Therefore the Translocation just happened and we don't mind it all. 


If you are interested the test done to determine what form of Down syndrome an individual has is called Karyotyping.

This is a copy of Vada's Karyotypes. If you look at number 21, her 21st chromosome, you can see that there is an arrow pointing to an empty spot. That's where her third, twenty-first chromosome would be if she had T21. However, that third little booger jumped to its neighbor and is actually sitting on top of what would have been the middle chromosome of the group. If you look carefully you can see that the first, twenty first has only one "dot" and the second has two. That second "dot" is actually Vada's piece or her third, twenty-first. Understand? I tried not to be confusing... When I first looked at these results I thought the arrow meant that since the piece wasn't there that they were saying she didn't have Down syndrome. Low and behold, she just has another form.

The truth is, regardless of what form of Down syndrome Vada may or may not have, her diagnosis is not a negative thing to our family. Vada is an important piece to our family puzzle and without her we would not be whole. She is loved, cherished, honored and respected. Like all children, she is proof of God's perfect works.

31 fo 21: Perfect Flip Flop Feet

Most of you are familiar with the facial features that are common in individuals who have Down syndrome. While people who have Down syndrome do look more like members of their own families they also share distinct commonalities with others who also have Down syndrome as well.  Meaning, in most cases you can look at an individual and know that they may have Down syndrome. (For me it's harder to do when looking at babies than it is when looking at older children and adults.)

Yes, she has a snotty nose but she had a cold and she can make even the snottiest of snotty noses cuter than cute!

When it comes to my children I will be the first to admit that I am totally bias. I love them and I cant help but think that they are the best kids ever even when they are on my last nerve! That's why it shouldn't surprise you that everything about Vada's appearances I find beautiful. Her almond kitten-like eyes and button nose, well, they melt my heart and her marble chin begs for me to kiss on it constantly.  I love how her hair grows straight up and I love her small hands, shorter fingers and tiny toes. To me she is perfect and I wouldn't change a single thing about her.

Some of my favorite physical features about Vada and other individuals who have Down syndrome are also some of the features that often go un-noticed. She has a single "life line" or crease on the palm of each of her hands. I have two and I can bet if you look at your own hands, the majority of you do as well. She also has one tiny kink at the tops of each of her pinky fingers.

When I look at Vada's hands I can't help but think of an old spi-like movie. It seems like so many of those movies ends up having some sort of hand reading device, you know-- where you have to put your hand into a box-like thingy and by doing so it can determine who you are by your individual prints.

To me her single crease and tiny kinks make her part of a group that was like a secret to us prior to her Down syndrome diagnosis. While I know our local Down syndrome family group was not and is not a secret, it wasn't something that we were aware of until we were blessed with Vada. Now because of her we are part of a group that has enriched our lives in so many ways.We have been invited into the lives of strangers all because of what those tiny prints of hers leads back to.

Another physical feature that is common with Down syndrome and something that Vada also has is a larger gap between her big and second toes. Hers is not as prominent as I have seen in others but its still fabulous! We joke and say she has perfect flip-flop feet!

Kiliegh thought that her nails should be painted before taking these flip flop pictures and she was right but we left a little on her toes...

It's important to keep in mind that not all individuals with Down syndrome will have all of the same physical features as another. It is also important to know that having more physical traits of Down syndrome does not correlate with an individuals intellectual abilities. Every person with and without Down syndrome is unique in their personalities and in their strengths.