31 for 21 Day 6

When we first told people that we were going to adopt a baby with Down syndrome it was really interesting the responses we got. We got the typical "why would you do that?" question, the "wow, when?" question, and the one that really got me was "what about YOUR kids?" Well let me tell you a little about our story. When I was in Chicago, July 2005, I went to the National Down Syndrome Convention and was in HOG HEAVEN! Scott and I had talked a little bit about international adoption (we were going to adopt a baby from China and name her Maya) and I guess I didn't pursue it too much because there was no way we could manage it financially. Anyway, at the convention I came upon a booth in the exhibit hall and there it was. An answer. It said Down Syndrome Adoption!! I was standing with my friend Jamie and I was like "Oh my gosh, this is it!" Yes, she looked at me like I was crazy, but I picked up an application, briefly talked to Robin Steele, the NDSS Adoption Coordinator and could not wait to tell Scott! I told the other ladies I was with and one said to me, "That is the last thing you need Cammie, you already have Cooper, that's enough." We didn't really argue, but we did have a debate. It bothered me very much but I got over it. When I came home I showed Scott the application and this is what my amazing husband said to me, "Why haven't you filled it out yet?"!! I was ecstatic! We can do it?? He said "sure, why not?"! I filled out the application and mailed it the next day. I thought about it some but we didn't hear anything until August 2006 so I just assumed that we didn't make it through the initial screening process. I was wrong, we were just that far down on the list! So we got that first call but they needed a home study ready family and we hadn't even started one. So I called the next day and got that ball rolling which was one of the slowest rolling balls ever, but it was in process. My dad passed away in October 2006 and I had not shared with my parents our plans because I knew initially we would have to answer the "why would you do that?" and I didn't want my parents under any more stress than what they were. I was crushed when he passed away, I miss him so much and I am kicking myself now that he never knew that we were going to add another angel to our family. About five weeks after he died my mom and I went to lunch. Our home study was nearing the final stages so I knew that it was the right time to tell her. (she had a secret for me but that's a whole other story!) I told her I needed to tell her something and she was all "Oh Cammie, is it bad I don't think I can handle anything bad." I just blurted out rather quickly, "No mom, it's not bad, it's wonderful, Scott and I are adopting a baby girl with Down syndrome." She just looked at me and was like "What?" and then she processed and I got the "Why?" and then I got the "When?" We talked for a bit and she told me that my Dad knew because he had told her one time that he could see us adopting sometime! That made me smile! So mom got a handle on the news and we ended up at Toys R Us and we came home with a new stroller/car seat combo for out little angel. I had no idea at the time but my girl was fighting for her life in a NICU up in Minnesota. I prayed for my unknown daughter for two years before she joined our family. I prayed about how she would affect our family and how amazing it was going to be. We had our fears, Jarika was not too thrilled, Cooper has Aspgerger's and it's hard to prepare for something that may or may not happen and Avery couldn't wait! I'm not saying it was the easiest transition ever, but it really wasn't a huge change for us, except when Addy got sick and was hospitalized, that was hard on all of us. So here are a couple of pix of the kids when they first met their baby sister:

Jarika said, "Okay she is cute."

Avery just kept asking "When can I hold her?"

Showing her off to Jarika's BFF, Sarah. Sarah is in her Junior Year of college, she's going to be an Occupational Therapist! She got to work with both Cooper and Addy over the summer, it was awesome!

Cooper actually got in a shot too!

So now you can see what we did to OUR kids. We are horrible parents aren't we!?!!?! Avery has so much fun playing with her, it cracks me up! Here they are tonight, he is playing his DS and she LOVES to watch, she laughs and laughs. What a horrible thing to do to my son!

31 for 21 Day 5

I don't know why I didn't label yesterday's post Day 4! Oh well! I guess my DS topic of the day is low muscle tone. Addy DEFINITELY has low muscle tone! ALL OVER! One myth of kiddos with DS is that their tongues are too large for their mouths. That's actually not true. I am a speech-pathologist and my very favorite program to use with my students is Talk Tools by Sara Rosenfield Johnson. Check out this very informative article that talks about the "myths"! Click HERE

Here's the "typical" posture of Addy's mouth:

She can definitely keep her tongue in her mouth, we tell her "put your tongue away" and she taps her tongue with her hand and in it goes. We just tell her and she does that, it's quite funny to watch!

Addy also has interesting ways to sit. She usually sits like this:

She sits like this because she gets more support through her hips and thighs (yes her tongue is out!). We really encourage her to sit indian style, which she will do, but this also another favorite position of hers, this was taken this evening:

And here are some of my favorite flexibility shots, she cracks me up!

Watching Baby Signing Time

31 for 21 Day 3

Today was cleaning day, oh how I hate that my weekends are filled with chores! But that's the price I have to pay to have relaxing nights during the week. We rearranged the furniture in the family room, I think I'm gonna like it. Addy has so much "stuff" that we are taken over! She has a bazillion toys and a stander and a gait trainer that take up quite a bit of room. She doesn't have her own room yet so that's really the only place to store them. We are working on moving Jake downstairs so Addy can have his room. There isn't another bedroom downstairs but we have an area that is really wasted space and his bed and "stuff" would fit there. He's really excited about it, we'll have to see if it works out!

Okay a bit about DS today, most of you know this, but we chose Addy. We chose to have a child with Down syndrome. We waited over two years for her. The only specification we had that she be a girl. We didn't care what race or health condition. Just girl. So granted Addy had a plethora of health issues that were very intimidating but we managed. Addy did have your "typical" heart condition associated with DS, her PDA, but it was repaired before we ever got her. However, Addy's main issue have been gastrointestinal. About 3% of infants with Down syndrome are born with an imperforate anus, meaning that there is no open anus from which stool can be passed. Addy also had duodenal atresia, about 5% of babies with Down syndrome have a duodenal obstruction, which means that the first part of the small intestine—the duodenum—becomes blocked. Usually this occurs because the duodenum developed differently during the fetal period. The end result is that digested food cannot pass through the duodenum; surgery is curative. So Addy came to us with a colostomy. Actually, two colostomies. She had a mucous fistula as well. Her birth mother told me that it was placed because it was really just an opening that oozed "gunk" from her belly. No, she didn't say gunk, she told me what it was and for the life of me I can't remember what it was! So here is a picture of Addy's belly when she came home. Wasn't she a chunk! She weighed 19lbs 7 oz. when we brought her home. See why I've been concerned about her weight???

Here's what her belly looked like the night before her colostomy closure (12/25/07).

And this is what it looked like after it got all healed and the staples removed!

31 for 21 Day 2

We were going to go to the Down Syndrome Group of the Ozarks trip to the Pumpkin Patch tonight, but it is soooo windy! The wind chills are in the 40s so we decided to stay home, Addy does not regulate her temperature very well so in we stay. It's kinda nice though, our Blue Jays are playing an away game tonight so I don't feel like I'm depriving my kids too much. Jarika is pretty bummed I didn't go but she understood!

Here is the little ditty about DS today. I STRONGLY encourage using sign language with kiddos that are non-verbal. Any kid actually, but using sign is so much easier for our little angels! Addy is currently using about 35-40 signs! This is so HUGE for her! She used the sign "dog" forever but really wasn't adding anything to her vocabulary besides "more" and "all done". She has learned sign from us using it with her since the day we met her (August 4th, 2007!) but she also has picked up tons from Signing Time! She LOVES watching it and will sign "baby" when she wants to watch Baby Signing Time dvds. She is getting four new dvds for her birthday. It's been hard not to let her watch her now but I am remaining strong! Well here is the pic of the day, Addy with her favorite person, her Daddy! Yes she is signing Daddy for him too!

Down Syndrome Awareness Month!

It's that time of year again! Down syndrome awareness month! I am sure that the majority of you that read my blog are well aware of this fact but some of you aren't! I am going to try to get a pic of Addy on the blog every day in October to promote DS Awareness! (like that's going to be a huge feat!)

Today as I was cruising my favorite blogs I found out that I won something!!! WOO HOO Go ME! Go check it out here! Thank you Sarah and Joyce! This will be wonderful since Addy's 3rd Birthday is in 17 days!!

Here is a little information about Down syndrome taken from the NDSS website!

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 percent 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. Addy was born with a congential heart defect known as a PDA/Patent Ductus Arteriosus Patent ductus arteriosus (PDA) is a heart problem that occurs soon after birth in some babies. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation. Within minutes or up to a few days after birth, the vessel is supposed to close as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can put strain on the heart and increase blood pressure in the lung arteries. Addy was also born with an imperforate anus, chronic lung disease and pumonary hypertension. 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. Addy has ALL of these! Here is her palmar crease, she only has it on her left hand :) Addy will be three years old on the 18th and she is 31 inches tall and 19lbs! 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.

OT Practice

Addy is so smart. I know we all think our kids are smart and they definitely are, but she amazes me all of the time. Delene (Addy and Cooper's OT) left an empty cookie container and some stretchy worms at the house on Friday after Addy's OT session. I got them out on Saturday night and started stretching the worms for her and laughing and what not. Addy looked at me like I was an idiot, crawled over to the container and did this:
Obviously she knows what she supposed to be doing with them! I did know, I was just stretching them and laughing trying to get her to do it. She definitely showed me that is NOT how Ms. Delene used them!