Amazing Baby Grace

World Down Syndrome Day Fundraiser For Peters Adoption

2011-02-23T08:17:00.000-08:00

If you follow me on facebook you have heard me talk about the Baby Boom going on with adoptions through Reece's Rainbow. Well I am so thrilled that one of the families adopting right now, is right here in Texas and part of my Pearland Community Group family.

The Kehm family was blessed with a 2 year old son (Kai) who has Down Syndrome, a beautiful little girl (Lilah) who will be one in March, and they are expecting another special edition to their family. The Kehm family has chosen to make Peter a member of their family, and has started their journey towards his adoption. They have to raise $5,000 if funds to complete his adoption. And thanks to Liz Shaw, we now have a wonderful fundraiser in the works to raise $1,000 to go towards his adoption.

World Down Syndrome Day yard signs are available as a thank you for your $15 donation. How wonderful would it be to have our community see our yellow and blue yard signs, with a yellow and blue bow tied to the trees, as we celebrate World Down Syndrome Day on March 21. What a great way to raise awareness, and raise money for a beautiful cause!

For each donation of $15 through the link below, you will receive one 12 x 18 yard sign like the image above. The yard signs will be available for pick up March 15, 2011. If you are not local and would like to have yours mailed to you, we ask that you add an additional $5 to your donation.

If you would like to follow the Kehm Family's journey you can visit her blog at:

http://upsidedown21.blogspot.com/2011/02/note-on-peters-grant.html?spref=fb
Let's get this sweet little boy home to his forever family, where he will receive an over flow of love and support, that he has missed out on these past four years!

From the Outside Looking In

2010-11-15T16:44:00.000-08:00

I have realized today, that no matter how close you are, how supportive you are, how aware you are. Those around you really just don't understand. Unless they are in your shoes, walking your walk, they are just by standers on the outside of the window looking in. Saying they can dance the dance, sing the song, but the reality is, only you and those in your new world truly understand.

Today I had someone very close to me say something to me that I took very offensive. I know myself, and my tendency to over react, so I shared this "situation" with others on both sides of the spectrum. I had my own mini therapy session with those that are a member of my Down Syndrome family, and those whom are not. It's sad that every MOTHER who has a child with Down Syndrome understood exactly how I felt, and every one who did not, thought I was over reacting.

My Thought Process

When you make that comment, using "retard", "short bus", "special ed"...9 times out of 10 you are using that statement to refer to someone or something in a negative respect. Well the reality is, that the terms were all once used on a daily, clinical, educational, normal basis for someone just like my daughter. And it HURTS!!! So, when I may ask you to not use that phrase or word again, my thought is...Some child may look up to you, whether its your daughter, son, niece, nephew, cousin, etc. And that child may notice that you use that description to make fun of or describe another person. Well, what does that child do...he goes to school and uses that same word or phrase to call his friend, or someone he may see at school who is a little bit different from him, or that child that he could be making fun of could be a child with Autism, a child with another chromosome disorder, a child with Down Syndrome, the daughter of one of my friends...or even my own little Grace.

It's hard to make someone understand, when they are on the outside looking in.

Do you think of Down Syndrome every day?

YES I DO!! Do I want to? NO!!!

You may see Grace once a month, or even once a week. And what you see is this cute little butterball who smiles and coos at everyone that crosses her path.

I see Grace daily, and although I see more of our families features in her, then I see Down Syndrome features, but I would be lying to say I don't also see where she resembles some of my friends kids in my Down Syndrome family. I see the slanting of the eyes (still beautiful) the shape of her head (I say to hold all the smartness) the bend in her chubby pinky (her signature bend for the tea cup hold).

I am also reminded on a normal basis when we have therapy sessions, and I am told how well she is doing, but also realize that we are several months behind. I am also reminded when I take her to the doctor and one of the first things the specialist says, "Oh, she is Downs" (ARGH)

I am even reminded when we are in the store and I have people look at her, and smile...that sympathetic smile, and stop to tell me how adorable she is. Would they have said that if she did not have Down Syndrome? So yes, I think of Down Syndrome every day. Do I want to? NO!! Do I think it will get easier as the years go by... I sure hope so!

She is handling this so well...

Compared to what? What does every Mom do with the obstacles that come their way? They make it through it. It's like a great movie once said "Men are supposed to be made outta steel or something?" when the reality of it is...that is what a MOM is made of!!!

Most days are good, and most days are easy. But every mom with a child with special needs, still has her hard days. I am not going to say its a hard and unbearable life. But there are those moments where you hurt for your child. Not because you want your child to be any different, but like every mother you want the best for your child, and wish your child didn't have to try so hard, or put the extra work or effort to do something so simple, that so many others take for granted. But, I truly feel God hand picked us, and chose each and every one of us individually, because he knew which ones could handle the obstacles and EMOTIONS that were going to come their way, and make the best of it, and love that child no matter what. My Love for Grace, is what gets me through those hard times.

So, in conclusion, I hope my post allowed for all of those who do not have a child with Special Needs, that are on the outside of my world, looking in, can have just a little bit better understanding of why something that may not mean so much to you, can hurt and be so personal for me.

Down Syndrome Butterfly Fundraiser

2010-10-13T06:23:00.000-07:00

Please join me as I raise money for the Houston Buddy Walk. I am selling a Bedazzled Down Syndrome Butterfly Iron On. You can iron on to any shirt you like. Each iron on is $15, and a portion of the sale will be donated to Grace's Glam Squad. Get your orders in now!!

Quantity

31 for T21 - Day 5 - Sleeping Beauty

2010-10-05T19:46:00.001-07:00

Even though she is sick...she is still Sleeping Beauty!

31 for T21 - Day 4 Sick Baby

2010-10-05T19:01:00.000-07:00

So, I am a day late. I have been dealing with a sick baby. This is Grace's first time being sick and she is 7 months old. I am grateful we have made it this far without getting the crud, but I could whip her brothers butt for giving it to her. Ok, that wasn't too nice. But Sammy was sick all last week, and it is almost impossible to keep these boys from their sister. They love her just TOO much. So, Sammy passed his germs to Gracie, like I expected. And now she has the runny nose, the bad cough, a sore throat, and feels down right crummy. She is just not herself. She is either sleep, eating, or crying for Mommy to hold her. So Mommy has had to give her baby girl some extra undivided attention these past few days.

We did go to the doctor yesterday, she has a combination of Croup and Allergies.

All this beautiful weather we have had in Pearland really sucks on baby girls allergies!

Well, heres to happy healing, and a speedy recovery.

31 for T21 - Day 3 - BABS

2010-10-03T20:06:00.000-07:00

So, I have a new nickname for Gracie. It's Babs!!

I am not sure why I thought Grace would be different, I am a talker, her brothers are talkers...so it was inevitable for her to be a talker. Grace has started babbling non stop. In the morning when she wakes up, while she is playing on the floor, in church as everyone is quiet. She is a talker!! What can I say? She got it from her momma!!

I must admit, I enjoyed watching my husbands smile today as she babbles Da-da-da-da-da!

31 for T21 - Day 2 - A Year Ago Today

2010-10-01T21:42:00.000-07:00

I can not believe how quickly time pasts. Has it really been a year since I got that phone call? The phone call that gave me the results of my amnio.

For starters, why on earth would a doctor call you at work with that type of news I have no idea. She is lucky that I liked her, and was willing to accept that from her. But yes, on October 2, 2009 I received a phone call at work with the results from my amnio. I went into a conference room and closed the door. Whats funny, is that I already knew what that doctor was about to tell me before she said it. Six weeks prior to this day, the first time "down syndrome" came into our vocabulary, I knew. I could feel something different early on. So I already knew what she was going to say, as the words came out of her mouth. "The results have been confirmed, you are having a girl and she does have trisomy 21."

I left work for the day and called my husband, my mother...crying the entire time. I am surprised they were able to understand a word I was saying. Driving at that time was probably not the best decision, but having a crying fit in the office probably wasn't a good decision either. I left work and drove home, questioning, all the things I thought this child would not do.

Then something took over me...its like a wave of calm came over me. I was still crying, but no longer hysterically crying. I pulled into the parking lot of our local shopping center. And I told myself. The doctor said its a GIRL. We are going to finally have a baby girl. And I switched my focus of the news that was handed to me that day. I stopped thinking (for a quick moment) that this darling baby I was carrying would have Down Syndrome, but instead I focused that I was finally having my BABY GIRL! I walked into the Carter's store, and picked out Grace's first dress. I was still crying, and had mascara streaked across my fast, and I checked out of the store with two dresses for my baby Grace.

Those two dresses hung on the door knob in my bedroom for several weeks after I was told my daughters diagnosis. It was my own type of "retail therapy." Every time the thought of sadness would come along and I would start to think about what I would be missing with my daughter having Down Syndrome, I took a look at the little brown dress with pink flowers hanging on my door knob, and would think...who cares....I am finally getting my BABY GIRL!

31 for T21 - Day 1

2010-10-01T18:32:00.000-07:00

So, today has been one of those full blown, PRESSURES OF BEING A MOM DAY!!! Since I can't think of too many pleasant things to say, I am going to share with you, what keeps my spirits high and keeps me going everyday. Everything I do in life, I do for three things....

These three smiles...

Order Your Awareness Band

2010-09-29T07:32:00.000-07:00

Order yours now, before we sell out. Support Grace's Glam Squad and the Houston Buddy Walk.

Awareness Bracelets

Living in Denial

2010-08-14T22:40:00.000-07:00

Did you ever go through a phase where you felt like you were living in denial?

Well, I think the reality of this phase hit me today.

Today Grace finally, had her baptism. Well as I got her dressed and snapped all these cute pictures of her..common on...face it...she's got that cuteness. Well as we are at the church and I see 3 other kids her age that are being baptized as well...reality sets in...Grace is different from these other kids. Other than Grace being a fat plump compared to these other kids, I notice other difference. She is not holding her body frame up as well. Her eyes are shaped a little different. Her nose is a little flatter than the others. Something about that smile, beautiful, but different. What am I seeing? Am I really seeing Down Syndrome for the first time? Or is it that I am around other kids her age that DO NOT have Down Syndrome and I notice it even more. And as much as I love every inch of this baby girl I look at her and think, does everyone else see... what I see? So just as I thought I had permanently closed the flood gates, I shed some tears tonight for my baby girl. Not because I love her any less, but because I see the difference. And if I see the difference, that means everyone else sees the difference, and unfortunately everyone else won't have this strong love for her that I have.

Despite mommy's moment of sadness on the day, Grace still managed to be the Princess that she is.

My Beautiful Down Syndrome Princess!

Grace, her mommy and daddy, and godparents (Nanny and Parean)

A Busy Month

2010-08-08T19:46:00.001-07:00

I glance at my blog and see its been over a month since I really posted anything...well we have been busy.

Today, Gracie is five months old. I can't believe it, time has really passed, but when you are blissfully happy time just seems to zoom by. Grace still seems to amaze her physical therapist and doctors by doing such a wonderful job. There are times when I look at our neighbors kid who is the same age as her, and I notice that she is a little bit wobblier than he is, and she is not sitting up...a pinch of sadness starts settling in, but then, she smiles that big beautiful smile and I forget about everything she is not doing and brag about all that she is doing.

Gracie was blessed to have a photographer come across my blog and donate her services. She read my blog and saw Grace's pictures and offered to take a few pictures of her to add to her gallery. This was a big reminder to me that there are still good people out there that want to help others. There is no way I would have been able to afford her services on a one income household. But I guess Angels are still watching over us, and have decided to bless us with some of the little luxuries we could have done with out.

Now other than snapping photos, mommy has had a lot of other things on her plate. I have discovered that we are definitely a football family. My oldest son has started playing little league football, and I just love every bit of it. I love it so much I have volunteered to be the team mom, and despite everyone telling me how horrible being the team mom is...I love being a part of my sons team. I am sure as the season starts I will have to add a little Evan bragging into my blog.

Well, as if I wasn't busy enough...I have also started a local community group for our Down Syndrome Association of Houston. Houston is a very big city and living on one of the suburban areas of town it would take almost an hour to get to our local meeting area. But I luckily will not have to do that anymore. I have worked with a few other moms in the area, and the president of our DSAH and we now have our own Pearland Community Group, and I am so proud to say I am the group leader. I have been very busy pulling this all together, but it will be so worth it in the end. It's funny I quit my job, and found what I was meant to be in life. A mom, and involved with the community. I am sooo loving this.

So now that I tell you what all I HAVE been doing, since posting to my blog has not been one of them, I am making this promise to post once a week...who am I making the promise to, myself!

Thank you so much Tonya for taking pictures of my baby.

www.owccphotography.com

2010 Buddy Walk Campaign Video - Amazing Grace

2010-07-18T13:08:00.001-07:00

Make photo slide shows at www.OneTrueMedia.com

2010-07-04T10:09:00.000-07:00

It's been one year, today, since I found out I was pregnant with baby number three. So many things started going through my mind. Can we afford another baby? Can I mentally handle another baby? I thought we were done. I didn't want another baby. How would I handle another baby? I was working crazy hours at a very demanding jobs, I just didn't see myself having the time for another baby. All the doubts of if we were going to be able to handle this haunted me on a constant basis.

About a month into my pregnancy I started having this strange feeling. The feeling that I was going to miscarry. I just had this feeling that I would NOT be able to handle three kids, and God doesn't give you what you can't handle, so I just had this feeling that something was going to happen and I was not going to go full term with this baby. Every day I tried to imagine how I was going to be able to handle what was in store for me in 9 months...

Then that's when the news came. I found out that Grace had a little something extra. As a matter of fact, at that point her name was going to be Lily, or Olivia even. But once I found out that I was having a girl, and that she was going to have Down Syndrome, I knew I was meant to have this baby.

A year ago, I would have never thought I would have an unimaginable love in my life. Grace! A little blessing she definitely is.

A Day of Discoveries

2010-07-02T10:33:00.001-07:00

I discovered that if I keep swaying my hand back and forth....

it eventually makes it into my mouth!

I discovered that if I pull on the toys, they make a funny noise as they clank together

I discovered if I get bored with the toys, Mommy usually leaves the ceiling fan on.

Oh what fun discoveries we have made today!

A Tribute to the Sisterhood

2010-06-24T16:05:00.000-07:00

I noticed today that I have over 150 friends on my facebook account that are my Sisters of the Extra Chromosome. Whether I met you through BabyCenter, or came across you on Facebook, God has really blessed me with this new found family that I have. I have learned more about your kids, and feel like I know them as any Aunt would know her nieces and nephews.

I am there to cheer on as Sara has her first taste of baby food, or Isla as she sits up like a big girl at the restaurant, or Violette as she conquers the potty, and Joy as she moves to the big crib.

I am there to congratulate Olivia on her 2nd Birthday, Kate on her 3rd or Gabriel and Kai as they become big brothers.

I am there to pray for Shane and Wyatt (who have been so strong), Jonathan (who approaches surgery next week), and Lucy (who has finally made it home)!

I am there to admire the photo shoots of Miss Elizabeth, the captivating smile of Ethan, the "wish I had" hair of Wyatt, and the beauty of Solana.

And this only speaks of a few. I could name them all Grady, Chloe, Micah, Castian, Sebastian, Vincent, Taylor, Lila, Sam, Molly and Claire....the list could go on and on.

I have grown to know these kids and their families. I have also grown to love and care for these little ones and their families, just as I would any niece or nephew. Just as I know so many have grown to love my little Grace. Some may not understand how you can have this bond with women you have never met, but ask any other mom in the Sisterhood of the Extra Chromosome, they feel the connection as well.

If only there was a way every time a family received the diagnosis, instead of someone telling them "I'm Sorry" there was someone there that could tell them, "oh how lucky!! you just gained an amazing family!"

Here's to my Girly Girl!

2010-06-17T06:49:00.000-07:00

Last October when I first found out about Grace's diagnosis my mind started racing about all the things she would not be able to do. I knew very little about Down Syndrome and that time and just expected for Grace not to be able to do the things that "typical" kids would be able to do. I was so excited about having my little girl (after 2 boys) that it was important to me to have that little girl that I could do tea parties with, that we could do ballet, and cheer, and everything else her (and mommy's) little heart desired. I so wanted that "girly girl" and thought that Down Syndrome would take that away for me.

It's amazing how your mind set changes the more you know. I now have Faith, that we will be able to do all of those things that I would do with a "typical" daughter. We can still do dance, we can still cheer (which I have had several people tell me about a little girl on our local cheer team) and we will still have many tea parties. Now, I don't worry about if she will be able to do these things. I just hope I we don't get any "tomboy" genes and Grace wants to do these things.

So here's to my Girly Girl!!!

My New Career

2010-06-14T11:50:00.000-07:00

Grace made 3 months old last week, and I have been home for almost 4 months. I must say I am embracing my new career in a way I never thought I would. I use to think I would get bored being at home, amongst children all day...sad to admit, that I even thought I would get tired of my kids. Funny how things work, as I experiencing the exact opposite.

Being home with the kids has allowed me to kick back and enjoy the little moments I use to overlook. I feel like I am living in SLOW - MO now that I no longer suffer from previous stress and busyness of my former employer. For once I am able to take the kids to the park, and not worry about rushing back home to get the house clean. Or nurture a kid that is not feeling well without being called from work on how to do this or that.

My hubby teased me on Sunday night saying that I traded in my high heels for flip flops....oh how I love my comfy flip flops.

The beginning of our summer fun:

And Grace just sleeps through it all!

I often wondered what I was meant to be when I grow.

Who knew, that I was meant to be a WIFE and a MOM!!

I just LOVE to see her smile...

2010-05-25T16:01:00.001-07:00

Isn't Down Syndrome Beautiful!!!

2010-05-21T20:49:00.000-07:00

Every week my husband and I normally sit down and watch "What would you do?" together. It's one of the few shows we both enjoy watching. Well one of the segments this week contained a young man with Down Syndrome. They had the actor with Down Syndrome bagging groceries, and another actor complaining and calling this person all kinds of ugly things to see how on lookers would react. Well, I cried as I saw how many people did NOT say a word to the actor who was being ugly. But they did have several people step forward. And it seemed like the people that DID step forward some how had involvement with someone with special needs. There was a teacher, and a brother that stood our the most. They both had someone with special needs touch their lives, so they felt the need to stand up for this young man with Down Syndrome who was being mistreated.

So, after crying my eyes during this show, with the thought that one day, someone could use those cruel words on my precious Grace, and knowing I am not always going to be able to be there and protect her, I went into deep thought. Every day I have someone tell me how cute and adorable Grace is (not being the gloating mommy) but it makes me want to tell that person, "Thank you, did you know that Down Syndrome could be so beautiful." I know it sounds crazy, but I do have that urge to share with the world that my beautiful, adorable, precious baby girl has an extra chromosome. It makes me think that person may come across another person with DS one day, and be kind to that person, because they remember that sweet innocent baby girl they met in the grocery store, or at the park that day. I know it may take time, but one by one we could change what people think of Down Syndrome.

Grace has been so blessed to be born into a wonderful family. And I dont mean me and my husband, etc....but we have an amazing extended family. Not many people could name their 100 or so 2nd and 3rd cousins, but I can! And this family has become an ARMY of love and support for Grace and Down Syndrome. Now I know Grace has opened the eyes of many family members, and how wonderful Down Syndrome is. I just hope day by day, we can show 100's of more people just how special our little ones are.

She looks like...

2010-04-07T16:13:00.001-07:00

Today I received one of the best compliments I could receive. She looks just like you!!!!!

Now, let me back up a few months. As my family and I were googgly eyed over the 3D ultrasound pictures trying to determine whose mouth she had, whose nose she had, and in the pics we already knew she had Aunty Lali's (excuse me, Nanny's) moose cheeks...a comment was brought up that it was not polite to say she looked like anyone. That's would be equivalent to saying, "You look like you have Down Syndrome!"

Well I was PROUD to hear today. She looks just like you! I could care less if I look like I have Down Syndrome, I am just so happy that I have a baby girl that looks like mommy. Now, is it conceited of me to think she is absolutely beautiful.

And if you haven't seen my boys...they are mini versions of my husband.

My first month in Holland!

2010-04-06T19:53:00.000-07:00

So Grace is finally here, and we have made it through our first month together. It's been busy, we have been to the doctor numerous times for non Down Syndrome related items...figures. Grace has been battling jaundice since she was three days old. I think doctors are just taking more precautions with her, so for almost 5 days straight we were at the doctors office daily checking her bili levels. The ladies at Methodist Labratory know us by name and have seen us more than I would have liked. I still dont think the jaundice is 100% gone but we are apparently out of the danger range. Then we had liver issues, weight gain concerns, and possible heart complications...but since then everything has cleared up and worked itself out.

Talk about a tired mommy. Ripping and running and recovering myself from a c-section. But you gain strength to do things you wouldn't expect that you could do. We are finally having a chance to sit back relax, and enjoy our bonding time together.

Now that we have been blessed with Grace for an entire month, I find myself thinking of Down Syndrome less and less, and just celebrating the fact that we have a little girl. I really expected for this experience to be different from my other kids, but the only difference is that I get to dress Grace up in cute girly outfits and take lots of pictures. Yes, she still has Down Syndrome, but more important she is our LITTLE PRINCESS and a very special baby Girl!
So to sum it up...we are enjoying our first month in Holland.

Welcome to Holland
Parenting a Special Needs Child
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills – and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things about Holland.

Grace Rolling Over

2010-04-05T07:37:00.000-07:00

Less than one month old, here is Grace rolling over already.

Announcing Baby Grace

2010-03-11T16:58:00.000-08:00

Well after months of waiting, Grace Simone is finally here!! She was born Monday, March 8, 2010 at 11:15am and 8lb 5oz and 19 inches long. I kept telling my family that the little booger would decide to come the day before my scheduled c-section...and sure enough she did. We are now at home and Grace is very healthy and doing well. Although she doesn't have many of the Down Syndrome characteristics, there were a few that confirm her prenatal diagnosis. The good thing is that her hole in heart has closed up, so we really have no health related issues that they were warning us about prenatally to worry about at this time. She is just a sweet, quiet, angel baby. Her big brothers are very proud, and daddy is already wrapped around her little finger.

I can't thank everyone enough for all the words of encouragement and prayers as we awaited our little Grace.

Grace at 35 weeks

2010-02-09T18:39:00.000-08:00

I am super excited as we had a wonderful dr visit today. I am 35 weeks along and Miss Piggy already weighs an esitmated 6lb 80z. She has 4 more weeks to cook as we have a C-section scheduled March 10, 2010.

Good news with todays visit is that her kidneys look better, and looks like the previous dialation seen is completely cleared up. The doc is still seeing a small VSD, but with the size of the hole he thinks surgery is not necessary. But we will have to confirm that with a cardiologist once baby girl gets here.

I can't describe my excitement seeing my little butterball today. I can't wait to hold her and kiss those big cheeks!!

Only 4 more weeks to go!!!

And YES, that is her foot in front of her little face...poor baby is running out of room.

Grace at 27 weeks

2010-01-23T09:52:00.000-08:00

I think its amazing that you can see she is sleeping. Her little eyelids are closed, and she is sleeping on her arm.

I also see my Aunty Carol's mouth and lips. :)

First Time Mom, Second Time Around

2010-01-18T19:53:00.000-08:00

As I approach the 32nd week of this pregnancy (YAY only 7 weeks to go) I start to realize I am anticipating the birth of this baby girl the same way I did when my 6 year old Evan was born. I feel like I am being a first time mom all over again. I am sure its a combination of the fact that I have 2 stinky little boys already and I am finally getting my long awaited baby girl; and the fact that Grace has been diagnosed with Down Syndrome, and this is entering a whole new realm for me.

If you know me, and I mean REALLY know me, you know that I am a very detailed oriented person. I am a very anal person, and I like to have things planned out as much as possible, and I dont handle things too well that don't go as planned. (got that from my momma) Now here I am expecting my 3rd child, who is a girl, who will have special needs, and I am starting to get terrified.

I feel like I can't compare my first two newborns to what I have coming ahead. Eventhough I have read the books, visited the websites, read the experiences of other moms, it doesn't change the fact that everything will be new, and I can't prepare for what I have ahead. I just have to pray that I stay on top of everything the best I can, and I do the very best for my little Grace.

Luckily, I have a wonderful husband, family and support system to stand by me and help me face the challenges I have ahead.

My New Vocabulary List

2010-01-07T18:22:00.000-08:00

Over the past few months I feel like I am back in High School learning and entirely new vocabulary list. Here is what we have learned so far:

Trisomy 21
Also, called Down Syndrome, is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. Often Down syndrome is associated with some impairment of cognitive ability and physical growth, and a particular set of facial characteristics.
I received this diagnosis at 16 weeks into my pregnancy. Two days after I found out I was having my baby girl.

Robertsonian Translocation
a common form of chromosomal rearrangement that in humans occurs in the five acrocentric chromosome pairs, namely 13, 14, 15, 21, and 22. Other translocations occur but do not lead to a viable foetus. In humans, when a Robertsonian translocation joins the long arm of chromosome 21 with the long arm of chromosome 14 (or 15), the heterozygous carrier is phenotypically normal because there are two copies of all major chromosome arms and hence two copies of all essential genes.[2] However, the progeny of this carrier may inherit an unbalanced trisomy 21, causing Down Syndrome.
Not only did I learn more about Down Syndrome, but I learned there are different types of Down Syndrome. Grace was diagnosed with Translocation Trisomy. Its amazing what they can tell from an amnio.

Nuchal Fold Test
a sonographic prenatal screening scan (ultrasound) to help identify higher risks of Down syndrome in a fetus, particularly for older women who have higher risks of such pregnancies. The scan is carried out at 11–13 weeks pregnancy and assesses the amount of fluid behind the neck of the fetus - also known as the nuchal fold or 'the nuchal translucency'. Fetuses at risk of Down tend to have a higher amount of fluid around the neck. The scan may also help confirm both the accuracy of the pregnancy dates and the foetal viability. Its high definition imaging may also detect other less common chromosomal abnormalities.
I have never heard of this test before they told me that her NFT measurement was abnormal. This is what started the additional testing for Down Syndrome.

Amniocentisis
is a medical procedure used in prenatal diagnosis of chromosomal abnormalities and fetal infections [1], in which a small amount of amniotic fluid, which contains fetal tissues, is extracted from the amnion or amniotic sac surrounding a developing fetus, and the fetal DNA is examined for genetic abnormalities.
The procedure used to obtain Grace's diagnosis.

Clinodactyly
is a medical term describing a bend or curvature of the fifth fingers (the "little fingers") toward the adjacent fourth fingers. It is a fairly common isolated anomaly which often goes unnoticed, but also occurs in combination with other abnormalities in many genetic syndromes, such as Russell-Silver syndrome, Feingold Syndrome or Down Syndrome. When identified in prenatal ultrasound, it is considered statistically correlated with increased risk of chromosome aberration in the fetus and may be an indication for intrauterine sampling for fetal chromosome analysis.
Little Grace received this diagnosis at 22 weeks.

Ventricular septal defect (VSD)
is a defect in the ventricular septum, the wall dividing the left and right ventricles of the heart. The ventricular septum consists of an inferior muscular and superior membranous portion and is extensively innervated with conducting cardiomyocytes. The membranous portion, which is close to the atrioventricular node, is most commonly affected in adults and older children. Smaller congenital VSDs often close on their own, as the heart grows, and in such cases may be treated conservatively.
We received this diagnosis at 22 weeks. The doctor is not concerned about the heart, he says the hole is very small, and normally holes of that size close up on their own.

Pyelectasis
is a dilation of the kidney. It is a relatively common ultrasound finding and is three times more common in male fetuses. In most cases pyelectasis resolves normally, having no ill effects on the baby. The significance of pyelectasis in fetuses is not clear. It was thought to be a marker for obstruction, but in most cases it resolves spontaneously. In some studies it has been shown to appear and disappear several times throughout the course of pregnancy. There is some discussion about what degree of pyelectasis is considered severe enough to warrant further investigation and most authorities use 6mm as the cut-off point. Pyelectasis is considered to be a "soft marker” for Down syndrome. This, along with other factors such as age and a Triple test, may be grounds for an amniocentesis to test for Down syndrome.
I was told at my 28 week ultrasound that appears that Grace's kidney's are dialated. It is nothing that they would worry about, but they will keep an eye on it and make sure everything is ok once she gets here. One doctor simply put it as "her kidneys are not maturing as quickly, but with most babies, they fix them selves before they get here" Lets pray she does just that.

Perinatologist
Maternal-fetal medicine (MFM) is the branch of obstetrics that focuses on the medical and surgical management of high-risk pregnancies. Management includes monitoring and treatment including comprehensive ultrasound, chorionic villus sampling, genetic amniocentesis, and fetal surgery or treatment. An obstetrician who practices maternal-fetal medicine sometimes is known as a perinatologist. This is a sub specialty to obstetrics and gynecology mainly used for patients with high risk pregnancies.
I have been so priveledged this pregnancy, I get to have two doctors see me on a regular basis. My regular OB and my Perinatalologist.

This is all I have learned and Grace isn't even here yet. Two more months, COUNTDOWN!!! I am sure we will have new vocabulary words to add once she gets here.

Todays PreNatal Visit - 22 weeks

2009-11-10T18:39:00.000-08:00

So today was our first visit with the Perinatalogist since our Down Syndrome diagnosis. The visit went very well. Grace is growing on schedule and so far is clear of the major health defects that are common in Down Syndrome patients. He did detect a small hole in Grace's heart, but nothing he is too concerned with now, and we will just monitor as my pregnancy progresses. I am really not too worried about that as I have read that sometimes things like this can heal on their own. How amazingly strong and resiliant these little ones are.

Halloween 2009

2009-11-03T12:21:00.000-08:00

My little Incredible and black ninja!

Letter to My Friends and Family

2009-10-28T13:59:00.000-07:00

As you probably already know, Semeon and I found out a few months ago that we are going to be adding a new little member to our family. Over the past few weeks we found out some both wonderful and surprising news that we wanted to share with our family and friends. First, we found out that we are expecting a GIRL! FINALLY after 6 years of being surrounded by nothing but boys mommy is getting her baby girl. Second, after months of various testing, we have also discovered that our baby girl has an extra chromosome (also called Down Syndrome.) Now, of course this initially came as a surprise and scare to us, as we were not familiar with Down Syndrome, the symptoms and what it does to a child. After two months of researching and learning everything I could, I soon realized that this is not a burden that has been placed on our laps, but a blessing we have received from God. Instead of thinking "why me," we truly feel that we have been chosen to care for this little angel coming into our lives. Now we know we have a journey ahead of us in the upcoming months, but we also know that we are surrounded by loving and supportive friends and family who will be there for us in case we stumble. So please, keep our little family and our little "blessing," Grace Symone, in your thoughts and prayers. We are very anxious for March 16, 2010 to get here so we can meet the newest family member, and start our new journey in life.

Love,
The Dickerson Family

The Journey Begins...

2009-10-28T12:53:00.000-07:00

So our Journey began on July 4, 2009. We were home with a sick child for July 4th, and something told me I was pregnant. I hadn't even missed my period yet, but still I knew I was pregnant. I took a pregnancy test at home (you know the one you keep in the back of the bathroom for just in case purposes) well the second line came up very faint. So I thought it was broken. I sit down to watch TV, and a commercial comes on for First Response, that gurantees accurate results before you miss your period. IT'S A SIGN. I tell Semeon I need to run to the store (without explanation) and pick up my test, and with in 60 seconds it read PREGNANT in pink letters. OH GREAT! We weren't planning to have another kid, we thought we were done. But deep down, I am a little excited...maybe, just maybe, this is my Baby Girl.

A month passes and the beginning of August is here, and something scary happens. I start spotting. Now this has NEVER happened with any of my other pregnancies so I totally freak out. The doctor tells me not to worry too much. She would only be concerned if its bright red, or cramping involved which none of that happened. So I TRIED to remain calm. Well after 4 days fo this going on, calm was out the door. So I call the doctor and she asks me to come in. They do an ultrasound, and baby is doing just fine. She says if it continues then she will send me to radiologist for a more detailed ultrasound. So I am a little at ease, until a week later it is still going on, so I call the doctor and we make the appointment for the radiologits.

On August 20, 2009, I spend a wonderful hour visit with the radiologist. I get to see my baby on the ultrasound screen for a full hour as the radiologist takes a zillion pictures. I am loving it. She excuses herself to leave, comes back, takes more scans, prints them and leaves again. I am starting to get a bit worried but she comes back in and explains she found a small bleed nothing to be too worried about, and it should clear up on its own. Needless to say I am relieved and ready to go.

The next morning I receive a phone call from my doctor, she explains the bleed, but also tells me they have found something else. They measured the back of the babies neck, which is called a Nuchal Test, and its measuring to be thicker than normal. She then explained to me that this is a soft marker for down syndrome. Talk about mouth dropped to the floor. She then recommended that I take the 1st trimester screening test (which I previously declined) which will tell me if I am at risk of giving birth to a child with Down Syndrome. At this point, I am a nervous wreck so I decide to do the screening, which consists of blood work and level II ultrasound. Ultrasound goes fine, I ask the perinatal doctor if the measurement is really above average, and his response was "borderline." So I sit back for 2 weeks and wait for the results to come back.

Two weeks later I receive a phone call from my doctor. The results are in and I have been given a 1:6 chance of giving birth to a child with Down Syndrome. This ratio is normally 1:10,000....but NO...I am given 1:6!!! So there we are, Mid September, I am 14 weeks pregnant and I have to decide if I want to have an Amnio to determine if the baby has Down Syndrome or not. It's either risk having a miscarriage by the amnio, or spend another 26 weeks in constant worry because I don't know whats going on with my baby. After a few days of stress and worrying, and talking to the doctors and nurses, I decide to go forward with the amnio.

On September 29, my husband and grandparents accompany me to my appointment for my amnio. The doctor does an ultrasound, checks out my baby through and through. Tells me the great news that its a GIRL and then begins amnio procedure. (Of course, hubby leaves the room) My grandmother sits there holding my hand and within 60 seconds he tells me he is done. My grandmother and I look at each other and both say, thats it. I have had blood drawn that was worse and more painful than that. The doctor tells me stay off my feet for 24 hours, and that I should get my FISH results in 48 hours.

Honestly, before I even got the results I already knew. The night before I had the amnio I kept having a dream that the doctor told me, Felicia you are having a girl and she has Down Syndrome. I met another woman online earlier that week who was also given 1:6 chance for Down Syndrome, and she explained to me that if she found out the baby had DS she was going to terminate and try again. I knew that was never an option for me. I even realized that I wasn't praying for her not to have Down Syndrome. Just for her to be ok, and not have all the added heart and abdominal complications that comes with Down Syndrome. I told God, I could handle it. Me and this other lady found out our results at the same time. And I guess He knew who He could give this baby to. The other lady was one of the FIVE, and her child does not have Down Syndrome, and my baby was chosen to be the ONE.

So far Grace is healthy as can be, she has a good heart, abdomen, and femurs. These are the common problems that are associated with kids with Down Syndrome. (so much you can learn in a month's time) We go for another ultrasound on November 10, 2009, and should no more about our little one then. For now we just pray that everything continues to go well and she gets here SAFELY AND HEALTHY!