I wish they'd never grow up!

As the kids and I danced to the new Taylor Swift CD today, I almost started to cry! Why you ask? Was it because I love Taylor so much? Was it because the way my kids dance makes me laugh so hard I cry? Well, the latter has something to do with it. I often feel like they are growing up too fast but today, I realized that the moments like the ones we were enjoying will be gone before I know it.

I know that there is no way to know what will happen with Grace in the future. Let me preface my next comment by saying that I want Grace to accomplish everything and anything she desires. I want her to be able to have a job, go to school, have a "normal" life all that kind of good stuff. I will push her to be the best she can be. However, I will admit that I never want her to leave me. I don't want her to live on her own. I always joke with Adam that he has to build her a house on our property when she is old enough to live on her own if that is what she wants. That way, I can still have her close by and keep an eye on her. The truth is, she might not always need me but I need her. I need that piece of heaven, I need that smile and unconditional love, I need Grace. Sometimes I think Heavenly Father sent her to me because he knows I will have such a hard time letting my kids go and maybe, just maybe, I will always be able to keep my Gracie girl near me. Although, the other day Grant did ask me if I will always buy him food. When I said I would, he told me, "Great! When I marry Hadlie, I will work then give her some money and she will give it to you and tell you what to get me!" I had to explain that as much as I would love to always take care of him, when he gets married his wife will take care of him. He had a puzzled look on his face and asked why. Before I could answer, he said, "Grandma B still tries to take care of daddy!" It was hilarious! I explained that as a mommy, you always want to take care of your kids. And if I have it my way, I will be able to sneak in through his window when he is older and rock him back and forth like in the children's book, Love You Forever.

Anyway, here are some random pictures of the past month. There are some pictures of when Grandma and Grandpa B came to visit, the Halloween party with our Joyschool friends, pictures of Grant with Tuna (the cat we found in the field behind us...more to come), pictures of Grant burying Grace in blankets and pillows, and pictures of the fun we had at the free night at the children's museum. Gracie's designer genes offer lots of perks for our family!

Primary Program

On Sunday, Grant was in his first Primary program at church. We were so glad that he actually participated!
My two handsome boys!
Gracie refused to take a break from Signing Time...some things are more important than pictures, I guess. :-)
Oh wait, she does stop to laugh at Bug.
I apologize for the blurry picture. But you can still see how cute they are, right?!?! A few funny things did happen during the program. First of all, Grant pulled the tongue of his shoes out so the bright orange part was sticking out--classic! Then, at one point, Grace was so excited she could see him, she was yelling at him and then started to "sing". And probably the funniest part was when Grant kept signing "STOP". I guess teaching him how to sign with Grace might backfire a bit.

And...We're back!

Let's admit it, I have failed with the whole 'post every day of the month' thing. However, let me explain my absence. The last week and a half has been long, emotional, busy, exciting, you name it....let's start with the long and emotional. Back in June I had a D&C when I was about 9 weeks along. I was heart broken. I knew that many women have miscarriages but it doesn't make it any easier. I cried a lot for 1 day but then felt total peace and knew that Heavenly Father is in charge, and that if I put my trust in him, I have nothing to worry about. Then, I got pregnant again. I was so excited, so was Grant and Adam. A week and a half ago, we went to the doctors for a check up and it was like someone had hit the replay button. After a week of blood tests and ultrasounds, I had another D&C on Friday. It was like the previous experience, I was totally emotional for 1 day. Had a lot of good crying sessions (that is when Grace gave me a hug then slapped me in the face), then felt total peace again. I am so thankful for the gospel. I have said it before and I will say it again. I know that Heavenly Father is in charge. He truly does want us to be happy and so if I just keep turning my will over to Him, then I will indeed be happy! Now on to the busy and exciting!!! Grandma and Grandpa B. came out to visit for a few days! The kids had loads of fun and the timing could not have been better. I was so thankful that they were here to take care of the kids while Adam and I were at the hospital. Family is the best! There was a lot of playing, a lot of laughs, and when they had to go home, there were quite a few tears. I will post some pictures of the fun we had once I decide to pull the pictures of the camera. And with that, I ask you to forgive me for being a slacker. I am rededicating myself to blogging ever day from here on out until the end of the month! Cheers!

Therapy

I know, I know...I missed yesterday. However, in my defense, my husband surprised me and took me on a hot date! Which means, not posting cannot be held against me. :-) Anyway, the other day as Grace was working with her developmental therapist--a thought that crosses my mind often, popped in to my head. Sometimes, I feel sorry for Grace. I mean, who likes to be told what to do, and who likes to be forced to do activities you don't really like? Poor Grace gets so frustrated. Lately, when she is upset with her therapist, she will do 1 of 3 things:

1. Hits them (which lands her cute little bottom in the repentance chair for 2 minutes)

2. Puts her head down and refuses to look at the therapist. She does however, occasionally attempt to look at them without moving her head at all. It is quite possible she has made her eyeballs do a complete 360. :-)

3. Goes up to the wall as she whines with her hands over her eyes then hits her hand on the wall and turns to me and signs owie as she walks towards me for sympathy.Like I said, I cannot really blame her for feeling upset and frustrated. I know that therapy is good for her and that because of all the therapy sessions, she is where she is developmentally. But still, sometimes I wish it would all just disappear for her. On Monday's she has developmental therapy (1 hours) and speech therapy (45 minutes). Wednesday is occupational therapy (1 hour) then speech later in the day (45 minutes). Friday, she has physical therapy (1 hour). We will probably be starting some feeding therapy, too. Usually, she also has at least 1 or 2 doctor appointments a week. Luckily, she will no longer have to be dragged to occupational therapy for Grant. He was doing OT for a few weeks but has since been dismissed. They thought he might have some sensory issues but it only took a few weeks of them "treating" him to realize that he does not. Anyway, my point is that Grace is a good sport. She takes everything with ease and tries to make the best of it. I would lock myself in my room and refuse to participate in any of the above activities! Which once again proves my point...Grace teaches me things daily and helps me have a positive attitude. Yay for therapy sessions and doctor appointments!

Types of Trisomy 21

Did you know that there are three different kinds of Down Syndrome? Well, if not, you will be well versed after reading this post. Nondisjunction Trisomy 21- The most common type of Down syndrome, in which the twenty-first chromosome does not separate from itself evenly. (This is the kind Grace has)

Mosaicism- A rare type of Down syndrome where the trisomy is present in some but not all , of the persons cells.

Translocation Trisomy 21- A rare form of Down syndrome caused when part of the extra number 21 chromosome breaks off and attaches itself elsewhere.

There you have it folks--don't worry, there will not be a test. :-)

Diaper Fight

I tried posting a video but it wouldn't work. And so, here are some pictures of Grant and Grace having a diaper fight. Okay, mostly Grant just throws the diapers and Grace watches. Sometimes, she will pick one up and put it in her mouth but that is about the extent of it.

The Little Monster

Grace IS the sweetest little thing in the entire world...but she can also be a little monster! No matter how hard I try to discipline her, nothing works. Everyone says to be consistent and it will start working. I am still waiting for that moment. I know, I know, she is 2, but she honestly does not seem to get it or even care! And the hardest part is, is that she is so darn cute, you have to leave the room after you get mad at her so you can laugh without her seeing. She LOVES to hit, slap, pull hair, you name it. Tonight, she was pestering Grant. He BEGGED me to take a picture of him on the potty. Probably because of all the ones we took of Gracie on her potty!

They got into a little argument, she started to cry and as we picked her up to remove her from the situation, she tried to kick him. (Sigh). On Thursday, I had been crying and she came up to me and smiled and then gave me a hug and patted me on the back. She then pulled away smiled again, then slapped me across the face and walked away. I couldn't help but laugh! It was like she was saying, "I'm sorry your sad, I love you, now buck up!" Naughty, but hilarious. Something not so funny...yesterday, I felt nauseated so I was laying on the floor during our morning family prayer. Right when Grant said "Amen" I felt something smack my nose. That something would be the bottom edge of this toy... The someone who threw it would be this little girl. It hurt pretty bad and then I sat up and Adam said I was bleeding. She had perfect aim--it hit the bridge of my nose and sliced it open. I must say though, it is healing much better than I thought it would. She backed away from me and sat on the ground and just stared me down. I think she was waiting to see what Adam and I would do. Ever since then, she has been signing, 'hurt', while she scrunches her nose and tries to get close to my nose. And at one point, she put her hands over her nose and eyes and started to whine. I guess she was reenacting what I did. There are a lot of other stories we could share about our little monster, but we will save them for another time. Oh, Grace, you definitely keep us on our toes.

What is Down syndrome

My favorite people

Today has been a long, emotionally draining, day. Since the kids are soundly sleeping, I think it is time to put myself to bed. And so, for day 7, I will leave you with some pictures of my favorite little people. I am so glad they are mine!

I remember when...

In March of 2008, I posted this:
Many of the doctor appointments have been in regards to our precious Grace. We decided to do the Nuchal Translucency test at the beginning of this pregnancy. It is a 3 part test that gives you a pretty accurate result as to whether or not your child has Down syndrome, or Trisomy 13 or 18. I went in, gave blood, then went in a few weeks later for an ultrasound. They measure the fluid behind the baby’s neck and then combine the results to give you your risk. My blood results indicated that I had a high risk of carrying a child with Down syndrome (high HCG and low PAPPA) and the measurements behind the neck were also higher than 2mm which is another indicator. Our risk for Down syndrome went from 1/900 to 1/21. To be completely honest, we were shocked to get those results. Everyone said not to worry and that it was probably a false positive. Then I gave blood again and the results went to 1/10. When we did the anatomy scan at 19 weeks, we were told that Grace has fluid in her lung. That is another sign of Down syndrome. All along the way, the doctors had pushed us to do an amniocentesis but we did not feel comfortable risking anything. Especially because it wouldn’t do Grace any good, it would just let us know 100% if she did have Down syndrome. When the fluid was found, we were told it could also indicate that she has a viral infection and that it might be treatable. Adam and I decided right then that we would do the amnio if it would help Grace. Luckily, my mom was in town and was able to extend her trip since I wasn’t able to lift Grant for 2 days. Then the waiting game began. Luckily, Grace does not have a viral infection.

It took 2 weeks but yesterday I received a call from my doctor. Grace does have Down syndrome. So many different emotions were felt. Adam and I are so lucky that Heavenly Father trusts us enough to send us such a strong spirit. We are blessed to have such a wonderful son who will be the best big brother ever! We fully accept the opportunity that Heavenly Father has given us and we just hope that we will be able to provide Grace with everything she needs. There is no doubt in our minds that she will do more for us then we will ever be able to do for her. We love you Grace! And we love you Grant…you tell everyone now that “Gracie special” but never forget that you are, too!

In some ways it seems like just yesterday, we were standing in the doctors office after the ultrasound, thinking everything was okay, laughing, talking about how cute the baby was, then the doctor walked out and pulled us down the hall where no one could hear. It was then that she explained the possibilities of Grace having Down syndrome. She acted like it was such a horrible thing. I remember trying not to cry because I didn't want to scare Grant, and I felt selfish that I didn't want my baby to have Down syndrome. When we asked to speak to a geneticist, we were told we couldn't because they had all left for the day. I wanted answers, I wanted facts, I wanted to make it all go away. Then, I remember asking to make my appointment to determine the gender of the baby and the doctor kept saying no, and kept commenting that I would decide to terminate. I kindly explained a number of times that no matter what, I was NOT going to terminate. She just didn't get it. I cannot tell you how many times during my pregnancy, people pushed me to terminate. I know it is a personal decision, but honestly, I feel like if people are missing out on so much by terminating these precious little children. I often joke that if it were possible, I would take Grace to meet anyone considering terminating a child with Down syndrome. I am pretty sure that one second with her...her beautiful smile, the gleam in her eyes, her pure love for everyone she meets...she could change a lot of peoples minds. There is not anything to dislike about Grace. Are there hard times, sure. Is every second we spend at therapy sessions, doctor appointments, hospital stays, etc. worth it? Yes! The rewards definitely outweigh hardships. I cannot put in to words how rewarding it is to have Grace in our family. I hope one day she will understand how much she has done for me. How she has changed me. How she has taught me to live, laugh, and love. The bottom line is, she makes me a better person.

Down Syndrome Facts

A lot of people I meet, mention that they don't know a lot about Down syndrome. So, for your reading pleasure, I pulled these facts from the National Down Syndrome Society website (www.ndss.org). Maybe you already know all of the facts or maybe you will learn something new.

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.

• There are more than 400,000 people living with Down syndrome in the United States.

• Down syndrome occurs in people of all races and economic levels.

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

• Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Superheroes

In a galaxy, far away, there lived a girl. Upon finding a pair of her older brother's underwear, she discovered it held magical powers! She tried with all her might to get them on, and with the help of her mother, she was successful. She then placed another pair she found on her head and then a hero was born....UNDERWEAR GIRL! Underwear Girl set out to save the galaxy, but quickly discovered another superhero...Spiderman! The two superheroes felt they could not coexist and so, a battle ensued. They zigged. They zagged, They jumped and crawled. Underwear Girl could not believe her eyes, Spiderman had moves she had never seen before!And so, Underwear Girl gave the title of SUPER superhero to none other than, Spiderman. Underwear Girl returned to her home and took her rightful place as Princess of Barrowville, where she frequently called upon Spiderman, to rid her land of all evil. Which of course he did, never asking for anything in return!

Growing up too fast

It's hard to believe that less than a year ago, Gracie looked like this... She was pretending to pray. She still LOVES to pray! If anyone has their arms folded, then she thinks we are praying and will stop what she is doing and fold her arms. She usually won't move until someone says, "Amen." And this was at Christmas. Yes, there is a hole in her tights. I had to cut holes in all of her jammies and tights so I could keep her pulse oximeter on her. If we ever have another girl, I think we will have to get all new clothes. We cut holes in lots of stuff to accommodate the pulse ox and feeding tube. Oh well! Then 10 months later, look at how she has grown! I think I am ready to hit the pause button. This was at the zoo. You can't really tell in the picture but she was standing over a vent, letting the air blow up her skirt. A few people asked me if she was imitating Marilyn Monroe. She is obsessed with anything that blows air. When I can't find her, my best bet is to look in Grant's room. There, I often find her with her face over his air filter, letting the wind blow her hair. Maybe it makes her feel like a model?!?!
It has been so much fun to watch Grace go through each stage. There have been some days that I really wanted her to get to the next stage...mostly just to catch up to her peers...but then I realized that I LOVE still having a "baby". And now that she is walking, I look back and wonder, why I was so excited for this stage to begin. This girl is silent and deadly! She moves so fast and can tear things apart before I can blink my eyes. Like yesterday, she dumped the guinea pig food out all over the laundry room floor. Before I even had that completely cleaned up, she had sneaked into the bathroom and started pulling hair bows and other stuff out from under the sink. Then she moved into the other bathroom and started ripping toilet paper off the roll...you get the picture. Would we change a thing though? No way! Well, maybe Grant would since she also is infamous for sneaking into his room and pulling the grass of his wall.

Potty Talk

Before we get started....please don't mind the crazy hair...she had just woken up from a nap! I promise that she doesn't usually look like Raggedy Ann. Also, she was getting over pneumonia.Who is up for some potty talk? Well, if you aren't then stop reading. A month or two ago, I set out a little potty so that Grace could sit on it if she wanted to. I did not expect her to care much but to my surprise, she seemed interested. (I've been told that because she has Down syndrome, she will not be potty trained until she is 3-5 and maybe even later). I taught her the sign for potty and would have her sit on it with her diaper whenever Grant was going potty. Before her bath, I would also have her sit on it. Sometimes while she was sitting on it, we would read, or sing, or pretend to push and then plug our nose. It was cute to see her kind of catch on to the purpose of the potty. Then, one day she signed potty before her bath. I set her on it, she signed potty again and sure enough, there was some peepee!!! Then a few weeks later, she was tooting a little and I asked her if she needed to go potty. After a while, she came to me and signed potty so we went and sat down. She pushed and let out a little cry and sure enough, she pooped! Then again today, she came up to me and signed potty. We held hands as we walked to the bathroom...she was of course taking her time, tilting her head back and forth and trying to dance while she walked. We finally made it to the bathroom and she tried taking of her pants (which means she grabs the side of them and pulls out while making a face like, "This is hard!" I put her on the potty and viola, another poopy! We clapped and carried on and even offered her a goldfish. However, she looked at it and threw it to the ground. I don't expect her to be potty trained any time soon but it is a start. And boy does she look adorable when she plugs her nose and pushes. Unfortunately, these videos are not the best quality.

Grant LOVES to hear himself talk. Especially, if he gets to record his voice and play it back over and over again, hence the constant talking in the background!
Oh and Grant was filiming 2 of them...enough said.

Day 1 of the 31 for 21 blog challenge

Grab This Button

Happy Down Syndrome Awareness month! I am going to give it my all to blog all 31 days. Hopefully, it will help raise some awareness about Down syndrome. Can I do it? That is questionable. Will I strive to do it? You betcha!

Our family has been so blessed by having Grace in our family. She honestly has taught us so much in her short 2 years. She is lucky to have such a wonderful big brother who is patient, kind, protective, loving, and many other things. I know he came first to help Grace on her way. Grace has a way of lighting up a room. She brings smiles to everyone. There is no way you can pass her by in the store without getting a loud, "bahdabadaadadbahbah!" All while waving and intently staring at you. Now who wouldn't smile at that? She has shown us what is truly important in life. It is the small things that matter. Each day we get to spend with our butterfly is a gift. Our Grace, is the definition of perfection! Please excuse that she is not wearing a shirt :-)