Thursday, October 7, 2010
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!
Wednesday, October 6, 2010
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.
Tuesday, October 5, 2010
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.
• 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.
Monday, October 4, 2010
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!Sunday, October 3, 2010
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.
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.
Saturday, October 2, 2010
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.
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.
Friday, October 1, 2010
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 :-)
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