31 for 21 Day 4

I missed a post yesterday due to pukey kids :( Poor Addy has the stomach flu for the second time this school year! Fortunately this time I think we have headed it off without infusion. She's handled mixed Pedialyte and Formula this afternoon. She was looking pretty iffy this morning :( I was afraid that her glucose level may be low again so I bit the bullet and added her formula back to her feeds and so far so good. I'm heading to St. Louis tomorrow for a Cleft Palate workshop so I'm praying that no one else has problems tomorrow while Daddy's in charge. 3 out of the 4 kids have been sick this week :(

So I stole this from the Down Syndrome Guild of Kansas City, one of my favorite resources :)

31 for 21 Day 2

• Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

• There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   
• Addy has Trisomy 21. We think Little Man has Trisomy 21, however, due to his development he is going to be re-tested (we've never seen his genetic testing) to see if has translocation.
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• Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
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• 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.
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• 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 has had multiple surgeries and hospitalizations in her seven-year life and has had multiple illnesses that have kept her from school. Little Man has been hospitalized once since he was born and has never had surgery.
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• 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 the upward slant to the eyes, her left hand has the single palmar crease, her right does not. Little Man has the palmar crease on both hands. His eyes also have the upward slant, however, due to his ethnicity it is not as pronounced.
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• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
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• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
• Addy attends First Grade with her typical peers for 68% of her school week. She participates in our church's children program weekly and takes dance class with her typical peers.
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• 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.
• Addy's IQ falls within the moderate range at this time. However, she has some amazing strengths. She is an excellent reader and is doing very well with her math skills. She follows directions well (when she chooses to) and participates to the best of her ability.
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• 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.
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- See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.lpawuakO.dpuf

31 for 21 Day 1

Once again I'm going to participate in 31 for 21 to raise and promote Down Syndrome Awareness Month. October is so full of pink and breast cancer awareness and DS gets shoved to the side. Don't get me wrong, I am all about promoting Breast Cancer Awareness (seriously, who's not aware of Breast Cancer?), my mother is a breast cancer survivor.

This month is going to be all about my daughter and what info I can give on our sweet Little Man. Addy is an amazing, fantastic, adorable, and spunky little girl. She is SOOO much like her typical peers in so many ways. Does she have differences? Well of course she does, but don't we all?

However, did you know ?????

MYTH: Down syndrome is a rare disorder.

TRUTH: Down syndrome is the most commonly occurring genetic condition. One in every 691 babies in the United States is born with Down syndrome, or approximately 6,000 births per year. Today, there are more than 400,000 people with Down syndrome living in the United States. 

MYTH: People with Down syndrome have a short life span. 

TRUTH: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

MYTH: Down syndrome is hereditary and runs in families.  

TRUTH: Down syndrome is hereditary in approximately 1% of all instances.  In the other 99% of cases Down syndrome is completely random and the only known factor that increases the risk is the age of the mother (over 35).  Translocation is the only type of Down syndrome known to have hereditary link.  Translocation accounts for 3 to 4% of all cases of Down syndrome.  Of those, one third (or 1% of all cases of Down syndrome) are hereditary.  

MYTH: Most children with Down syndrome are born to older parents.

TRUTH: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

MYTH: People with Down syndrome have severe cognitive delays.

TRUTH: Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

MYTH: Most people with Down syndrome are institutionalized.

TRUTH: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

MYTH: Parents will not find community support in bringing up their child with Down syndrome.

TRUTH: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome. 

MYTH: Children with Down syndrome must be placed in segregated special education programs.

TRUTH: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

MYTH: Adults with Down syndrome are unemployable.

TRUTH: Businesses are seeking adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry to name a few.

MYTH: People with Down syndrome are always happy.

TRUTH: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

MYTH: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

TRUTH: People with Down syndrome have meaningful friendships, date, socialize, form ongoing relationships and marry.

MYTH: Down syndrome can never be cured.

TRUTH: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

- See more at: http://www.ndss.org/Down-Syndrome/Myths-Truths/#sthash.kTRiUCpy.dpuf

Getting in the groove

Well we've had two and half weeks of school under our belts. Cooper has adjusted well to high school and seems to be enjoying it :) This is Jake's second year of Jr. High (6-8grade) so he's having no trouble with adjustment lol. He has started football practice and is working hard. I hope he has fun, he appears to be putting forth good effort, hope that continues :) Can't wait to see his first game! Addy is loving school (no shock there)! I am very pleased with how the year is going so far :) The communication has been fantastic and her para is a gem :) I was a little concerned because I know she has lost several skills over the summer but she seems to be picking things back up quickly. She loves reading and I'm happy that her sight words are still pretty strong. She is definitely worn out after school but in time she will get some stamina built back up. Our days are getting busier, that's for sure, but I know it's all good :)

Cooper participates in Youth Choir at church on Wednesday nights and Youth Group on Sunday nights. He takes piano on Monday nights.

Jake has football practice everyday after school and in a couple of weeks will be having games on Tuesday nights. He is also doing Youth Choir and Youth group.

Addy has feeding therapy every other Tuesday (I have to pick her up a little early from school) and then she has music therapy on Tuesday nights. She goes to church after school on Wednesdays for Kids Krossing and Children's Choir at church. Our pastor picks the kids up on the church bus and takes them over to the church. Addy loves that :) After Labor Day she is starting Hip Hop Dance in a town close by at 5:30 (right after church), she's going to be wiped out by Thursday! Busy nights! She didn't take dance the past year because the studio closed. I have heard great things about the place in Strafford where are going to start. I'm excited she gets this opportunity :) Girl may not be able to jump but she can "shake it" like no other!

Little Man started a new daycare at the beginning of August and it's going really well. He loves playing with so many babies! He is a busy little boy and keeps us hopping all of the time! He has therapy on Thursdays after school. He's receiving OT/PT every other week and ST once per month. For having DS I'm blown away about how on target he is :) He's starting to stand some independently. He crawls super fast so I'm sure he's just going to run! We did find out that he needs glasses so we are picking them up on Monday. He was NOT a fan of the trying on frames process at all. This should be an interesting adventure! Addy got two new pairs of Specs 4 Us, we love them and she is keeping them on REALLY well!

I have started my new job and I'm really liking it. I've only been to Mansfield, one of the districts I've been assigned to. Mansfield is where Laura Ingalls Wilder wrote her Little House books :) I have toured her house before, it was really a fun place.  I will start the other district this week. I'm hoping to work a bit more once my second district has my position worked out :) I have truly enjoyed having some extra time off but I'm not going to love the tiny paycheck at the end of September :) It's been a loooong time since I worked hourly! I'm sure I will LOVE the check at the end of October :) I am working 3 1/2 days per week right now. I may work more, just depends on my schedule :) Fortunately some of my work can be done from home :) I am not working on Fridays unless I absolutely have to. My kids have several half-days on Fridays and this way I be home with them :)

Here's to beginning our busy/crazy life that I wouldn't change for the world!

First Day of School!

This summer absolutely flew by! I'm sure it had nothing to do with the fact that I spent most of July traveling :)

Cooper started High School today! It is so strange to think he is old enough! I'm always nervous about changes for him, you never know how they are going to go. Asperger's syndrome is an interesting thing. There are days we don't see it at all and others it hits you smack dab in the face. Last night we went for orientation and it was pretty apparent. He didn't look any teachers in the face and barely uttered a word. I could tell he was uncomfortable but hoping and praying that things go well. I'm sure once he gets his schedule down (which he thrives on) he will have a good year :)

Jake is in his second year of Jr. High as a 7th grader :) He is so easy going and adapts easily to pretty much anything! He has his first football practice today too. He wasn't sure if he was going to play or not but he went for it :) I think he'll have fun :)

Addy starts First Grade today! She was sooo wound up this morning! It was adorable! She was so excited to be going back to school. She LOVES it! Her teacher is a good friend of mine and is really excited to have our onery little thing in her class :) I'm REALLY excited about her para too! She has a lot of experience and is going to be so good for Miss AddyTude! We made a cute little chalkboard sign last night, too bad I put the wrong date on it lol. Oh well, a little Picmonkey made it look ok!

This morning

This is what greeted us early this morning. The pix aren't good, I wasn't paying attention to the setting. However, you can see, we had a tad bit of water in our backyard this morning. Fortunately it didn't come inside today. Scott and the boys worked really hard getting all of the carpet up downstairs yesterday. We tried and tried to dry it but there was no way, there was way too much water. It's still raining and we have a chance everyday this week :(

Seriously?

We had an insane storm with a HUGE amount of rain last night. It took out over 100 feet of our privacy fence and our entire basement is soaked :( We have carpet in the basement that I've wanted to rip up forever, it looks like I just might be doing that now. Cooper's room has laminate floor and it got soaked too so not sure if it's going to be okay. Hoping we hear from the insurance tomorrow. I hate things like this!

In this picture Scott is standing where the fence was and I am standing next to the furthest piece of fence that drifted away. It probably would have gone farther if there wasn't so many trees there!