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.