Happy THIRD Birthday, Evan!!!

Total denial.  Three years?!? No way.  My BABY is THREE already??

Hard to believe it's been three years already since this precious boy entered our lives- soooo difficult to think back to before Evan was here.  

Yes, Evan had quite the orange glow going on with his jaundice- he was ready for Halloween!

Oh sweet boy, how you have blessed us in more ways than you will ever know!

We celebrated Evan's birthday this past weekend with a small family party.  First, he helped prepare for the party by doing his FAVORITE task- vacuuming!!

Mommy decorated the cupcakes...

And then it was time to party!! 

We had a major Elmo/Sesame Street theme going on- Evan's FAVORITES lately

All he wanted to do was sit and read his books- he could NOT be bothered with opening gifts!  Thankfully he had cousins around to help out in that department ;)

LOVE his fake smile for the camera! 

He was a bit confused at cake time- what do you mean it's time to eat already??

Another fake smile <3 nbsp="nbsp" p="p">

omgosh this cake is so GOOD!!

And GONE!

Now that the party is over, we're hunkering down while Hurricane Sandy goes by.... Lina has taught us a thing or two about Russian storm preparation...

Stay safe, everyone!! xoxoxo

Falling behind... more Down syndrome facts!!

Holy cow, is it really the 22nd of October, ALREADY??? This month is flying by as it has been quite chaotic around here (when is it not, right? ;) ) with school meetings to review Lina's testing, volunteering in classrooms, sending big kids off to a Halloween camping trip with MomMom and PopPop last weekend, and now preparing for Evan's birthday!  Whew!  I have been completely neglecting Down Syndrome Awareness month and I do feel very guilty about it!  To get caught up while trying not to bore you to death, I'm going to include some photos we have acquired of Lina from her time in the orphanages- some I have never posted before. :)  We really are blessed to have so many as this is NOT the norm for an orphan. Enjoy!

Fact #10: There are unexpected benefits to having a family member with Down syndrome.  Divorce rates among families with children with Down syndrome are lower than the divorce rates among families with children with other birth defects and also lower than the divorce rates among families with no identified disability.

I believe this was when Lina was first admitted to the baby house at just over a year old.  She spent her entire first year of life in a hospital.

Fact #11: There are more than 250 local support organizations across the United States for families with a loved one with Down syndrome.  With inclusion and awareness, Down syndrome is becoming more understood and accepted.  We are seeing more and more people with Down syndrome in mainstream media.

March or April 2008- at about 18 months old

Fact #12:  A person with Down syndrome can have an IQ in the mild-to-moderate range of intellectual disabilities.  He or she also might have delayed language development and difficulties with physical coordination.  Early Intervention programs are designed to provide therapies to a child to help them achieve their developmental milestones.  With therapy and a stimulating environment, there is no limit to the potential of individuals with Down syndrome.

Lina's photo that was posted on the Russian adoption database- only one Russian family ever inquired about adopting her while she was in the baby house (never after she was transferred) but after reviewing her file they never came to meet her and chose another child.

Fact #13:  People born with Down syndrome will have it their entire life.  They cannot be cured of it and they cannot give it to someone else.  Down syndrome is not a disease and people do not suffer from it.  Treatment is available for many of the symptoms and conditions that may accompany the diagnosis.

Fall 2010- right before she was transferred at 4 yrs old

Fact #14:  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 to their full potential and lead fulfilling lives.  An increasing number of people with Down syndrome are attending college, marrying and working competitively in their communities.

photo found on a Russian charity website- guessing around Fall 2010 also

Fact #15:  The extra chromosome in Trisomy 21 can originate from either the mother or the father.  Human cells normally contain 23 pairs of chromosomes.  One chromosome in each pair comes from each parent. Down syndrome results when one of three types of abnormal cell division involving chromosome 21 occurs.

ROOF summer camp 2011 at orphanage for older children

Fact #16:  People with Down syndrome are just that.  They are people... just like you... and they happen to have Down syndrome.  It is a part of them; it does not define them.  We say that a person "has Down syndrome."  We do not say "A Down syndrome person" or "Downs person."  Person first, then the disability.

Another summer camp photo Summer 2011

Fact #17:  Contrary to popular belief, people with Down syndrome are not happy all the time.  They have feelings just like everyone else in the population and they experience a full range of emotions.  People with Down syndrome respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

photo sent to me by a ROOF volunteer- first genuine smile I saw since she was transferred to the older children's facility

Fact #18:  A recent survey showed that:
99% of people with Down syndrome said they were happy with their lives.
97% of people with Down syndrome like who they are.
99% of parents said they love their child with down syndrome.
97% of brothers/sisters, ages 9-11, said they love their sibling with Down syndrome.

During a visit with ROOF volunteers, March 2012

Fact #19:  John Langdon Down, an English physician, published scholarly work describing Down syndrome in 1866 that earned him the reputation as the "father" of Down syndrome.  Down syndrome is named after him.  Dr. Down and his wife dedicated their entire lives to caring for people with Down syndrome.  In 1958, a geneticist named Jerome Lejeune discovered that Down syndrome is caused due to the presence of an extra 21st chromosome.  He called the disorder trisomy 21.  Professor Jerome dedicated his life to researching Down syndrome.

Another ROOF visit, March 2012

Fact #20:  Trisomy 21 (nondisjunction) is the most common type of Down syndrome, occuring in about 95% of cases.  The two other variants of Down syndrome are translocation (4%) and mosaic (1%).  Trisomy 21 and mosaic Down syndrome are random events (not hereditary).  Translocation Down syndrome is often a random event, but in some cases it can be inherited.

Have I told you how much we love ROOF? :) www.roofnet.org

Fact #21:  Down syndrome is not related to race, nationality, religion or socioeconomic status.

Our court trip, March 2012- we had JUST missed seeing the ROOF volunteers!  We'll never forget this crazy hairdo!

Fact #22:  People with Down syndrome may have nutritional concerns.  Some children with Down syndrome may have failure to thrive.  On the other hand, some adolescents and adults can battle obesity.  These issues can be helped or prevented with appropriate nutritional counseling.

Orphan no more!! Playing dress up with Mommy's coat (upside down) and Daddy's shoes while in Moscow, preparing to come home- April 2012

Films for Friday!

Sorry, that's the best I could come up with!  I'm spent after a longggggg week... so posting a few videos of the littles being their adorable selves. :) The first few are of Evan signing to his Signing Time music CD's- no video on the tv to follow along to ;) I do apologize for the quality since he kept running up to me trying to climb on me being silly while I'm trying to catch him signing.  It is near impossible, I tell you!  Also ignore my *lovely* singing. As you can tell, Evan was in a very silly mood, so if you know the signs you will recognize many in between the sillies- otherwise, please trust me he is signing a LOT! ;)

This first one you have to bear with him through the first minute or so- then he really gets into it. ;)

And up next... Lina! She made up this little game during lunch the other day so I had to get out the camera to share! Her signing vocabulary is AMAZING- she knows almost as many signs as Evan- around 100 or so. She will put two signs together to make phrases also. Amazing for being with us just 6 months!! Yesterday was her 6 month Gotcha-versary- 6 months since the day we busted her out of the orphanage forever. You can find that post on my adoption blog HERE if you missed the post yesterday. And now, without further ado... Miss Lina!!

Lina's trip to the firehouse!

Today, Lina's preschool class took a field trip to a local fire station since they have been talking about fire prevention at school.  I wasn't sure how Lina would handle this one but figured we'd give it a go.

Lina got anxious and worrisome as soon as we walked into the station with all the fire trucks- she has a fear of large vehicles.  It totally didn't dawn on me until we got there, but I quickly recalled how she is uncomfortable at the bus stop when Kaylin and Justin get on the school bus- she does NOT like big vehicles.    Something she was NEVER exposed to at the orphanage out in the middle of no where, these are very scary for her.  She stuck close by me and several times wanted me to hold her.  

She was brave enough to climb up into the fire truck though :) and had a walk through.  She wasn't sure about that firefighter guy waiting to help her down.

Fireman Lou (not the guy above) was awesome showing the kids around and speaking on their level.  After walking all through the fire house to see where the firemen relax and watch tv, see where they get the calls coming in, and see where they sleep, we went back out to the garage portion where Fireman Lou got all suited up in his gear.  Then the absolute cutest part of the day- letting the kids suit up in child-sized gear!  Lina was last in line and oh my gosh she was NOT happy.  All she wanted were the boots.  She sobbed and sobbed, signing and saying boots over and over, oh my gosh so pathetic the poor thing.  Then FINALLY it was her turn.

Little stinker was all smiles getting suited up, but stick her in front of the truck to get her picture and not a smile!  I dreaded having to get her out of the gear after the fit she was having waiting to put on those boots, but she handled it pretty well.  She got to climb up into an ambulance...

and she was ready to take off from there!  We did have to make a stop at the store on our way home, and Mommy couldn't resist buying her a pair of princess boots since she spied them IMMEDIATELY and was saying and signing "boots" over and over and over.... Yes Lina, you do need those adorably cute boots!  I am thinking she got so excited with the boots not only because she LOVES shoes and has to try on everyone's shoes who comes to our house, but also from her time at the orphanage- when she got to wear boots it meant she was leaving those same four walls she spent her time each and every day to go outside and have some FUN. 

After we picked up Evan from school and came home for lunch, Lina went straight for the bag with her new boots as I was finishing up lunch with Evan.  I peeked into the living room and found her snuggled up on the couch with her fireman hat and the plastic bag with her new boots inside.  What more does a girl need? :)

Love you, Lina girl. xoxoxo

Facts are facts!

So things are a bit busy in our household and I haven't been able to blog as frequently as I'd like for Down Syndrome Awareness Month.  I have seen people post nifty facts about Down syndrome on their Facebook wall each day, and since I'm a slacker I'm going to group them together. ;)

Fact #1:

Down syndrome is a genetic condition that occurs in one in every 691 live births.  Individuals with Down syndrome are born with 47 chromosomes instead of the usual 46.  It is the most frequently occurring chromosomal disorder.  The genetic anomaly causes delays in physical and intellectual development.

Fact #2:

Down syndrome is diagnosed either during pregnancy through testing, or shortly after birth.  After birth, the diagnosis is based on physical characteristics that are commonly (but not always) seen in babies with Down syndrome.  These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile, and an upward slant to the eyes.  The diagnosis must be confirmed by a chromosome study (karyotype shown above).

And just FYI: Evan has somewhat of a single crease on his hands, the lower set ears, almond shaped eyes... he does not have the "sandal toe" gap or the short curved pinky finger.  Lina has the flattened profile but her nose doesn't seem that flattened, she doesn't have the single crease on the hand, the curved pinky, nor the sandal toe.  Her eyes aren't as almond shaped either, and her ears don't seem that different.  It is very difficult to tell she has DS just looking at her front on- but it's much more obvious from her profile.

Fact #3:

There is no association between Down Syndrome and culture, ethnic group, socioeconomic status or geographic region. Various studies have looked at correlations among live births of children with DS and race and found SLIGHT variations based on prenatal screening and diagnosis, maternal age, and access to medical care and education about the diagnosis with varying results...but there is no association with the prevalence of conceiving a child with DS and race.

Fact #4:

Down Syndrome is a genetic condition. It is not an "illness" and people with DS don't "suffer from" DS.  Clearly you have seen from all the photographic proof on my blog that my children are not *suffering* ;) nor is anyone else in our household!

Fact #5:

Using people-first language when talking about a person with Down syndrome (or any other differently abled person) is important because it conveys that the individual is first, and they are not defined by their disability. Examples: "Down syndrome person"=NOT people first language. "person with Down syndrome"=people first language.

Fact #6:

 Individuals with Down syndrome have cognitive delays or intellectual disabilities. THEY ARE NOT RETARDED. Mentally retarded is an outdated word that was once used to describe people with an IQ below 70. That word is no longer used medically as it has evolved into an offensive word with a negative connotation because people have used it to describe things or people that they believe are stupid, defective, or imperfect. It is HURTFUL to people with DS and their families. PLEASE (for the love of my children) remove it from your vocabulary.

Fact #7:

People with Down syndrome have the right to have personal and sexual relationships, and to get married. There are a number of happily married couples where one or both partners have Down syndrome. It is important that young people with Down syndrome receive education in the area of relationships and sexuality. As in other areas of learning, they may need more support with this than some of their peers.

{Monica & David}

Fact #8:

There are three different types of Down syndrome: Standard Trisomy 21, Translocation, and Mosaicism.

Standard Trisomy 21 is when the extra chromosome 21 comes from either the egg or sperm cell. Between 90% and 95% of all Down syndrome is Standard Trisomy 21.

Translocation is caused when a piece of chromosome 21 is located on another chromosome such as chromosome 14. The person with Translocation Trisomy 21 will have 46 chromosomes but will have the genetic material of 47 chromosomes. The person with Translocation Trisomy 21 will exhibit all the same characteristics of a person with Standard Trisomy 21 since they have three copies of chromosome 21. Translocation occurs between 3% and 5% of cases of Down syndrome.

Mosaicism is when a person has a mix of cells, some containing 46 chromosomes and some containing 47 chromosomes. This occurs either because: a) The person received 46 chromosomes at fertilization but somewhere during early cell division the chromosome 21 cell pairs failed to split creating a cell with 47 chromosomes and a cell with 45 chromosomes. The cell with 45 chromosomes can not survive but the cell with 47 chromosomes will continue to divide. All cells that come from this cell will contain 47 chromosomes. b) The person received 47 chromosomes at fertilization but later during cell division the extra chromosome is lost. Mosaicism occurs in 2% to 5% of cases of Down syndrome. A person with Mosaic Down syndrome may exhibit all, some, or none of the characteristics of Down syndrome depending on the percent of cells carrying the extra chromosome and where these cells are located.

Both Lina and Evan have the standard Trisomy 21.

Fact #9:

Each year about 6,000 babies in the United States are born with Down syndrome.  More than 400,000 people in the United States are living with Down syndrome.  A few million people are living with the condition worldwide.  These numbers would be much higher if more expectant mothers chose life instead of terminating when they receive a DS diagnosis.  Sadly, 90% of mothers who receive a diagnosis prenatally choose to abort. :( This saddens me SO much.... I just can't imagine life without my precious Evan, and am so grateful Lina is here with us today as well.  How I'd love to sit down and chat with any mother receiving this *scary* diagnosis, for I was in those shoes when Evan was first born, and I too thought my world was ending.  I quickly realized that life was just beginning as Evan has been such an INCREDIBLE blessing to us, and opened our eyes to the orphan crisis in other parts of the world.

{Lina at the institution before she knew she had a family coming for her}

Lina's first field trip!

Happy Down Syndrome Awareness Month!! :)) October is the month we take time to acknowledge our lil designer gene sporting friends and shout out to the world that Down syndrome is not this big scary diagnosis, but rather a HUGE blessing! :)  I am doubting I will be able to participate in the 31 for 21 blog campaign this year, blogging every day of October- especially since I already missed yesterday!  But I will do my best to share tidbits here and there for the cause. ;)

Before I get into my phone dump of Lina's field trip, I wanted to share a big update on Lina's growth!  She had a follow up appointment with the endocrinologist yesterday since she had to begin thyroid medication.  One little fact about children with DS- they have a higher chance of having thyroid issues and need their blood checked regularly to be sure all is in check.  So far Evan's levels have been fine- he gets his blood checked annually now.  Lina's were a little off at her first check when we brought her home, so she began a low dose of medication.  Her first appointment with the endocrinologist was June 1st where she weighed 36 lbs and measured 40.9" tall.  Yesterday, exactly 4 months later, she weighed in at 39.5 lbs and get this.... 42.9 inches!! She has grown 2 whole inches in 4 months!!  The doctor had commented as soon as she walked in the room and saw Lina that she had grown a lot, but she still had to check her math to be sure it was correct- and it was!  Someone is definitely playing catch up! :)  I know she's been growing as she is growing out of many of her clothes, and her feet have grown at least a half size also.  As far as treatment for her hypothyroidism, she has been responding well to the medication so far, so we will follow up again in 6 months.

On to the field trip!  Lina's preschool class took a trip to a little children's museum up in Gettysburg, PA called Explore & More- super cute place for the preschool/kindergarten crowd!! Kids had a blast.

The first little experiment Lina did was drop colored water into a pan of milk.  After adding color, she took a toothpick with dish liquid on the end and tipped it into the color to watch it spread! Fun stuff!

In this room there were also marbles to play with...

Big tubs to mix colored water...

We soon opted for the little rain coat as Lina was having a LOT of fun with this activity!  She particularly enjoyed playing with the faucets at the bottom to release the water back into the buckets.

The next super fun activity in this room- standing inside a giant bubble!

A couple kids were able to blow a bubble out of the giant bubble- Lina came close but couldn't quite get it.  Hard stuff!

There was a puppet stage with a ton of puppets just around the corner- Lina played with those for a few minutes...

... and then we headed around the corner to the "General Store"- it was like a little old-fashioned housekeeping area.  Super cute stuff!

Lina of course would have been happy there all day, but I coerced her to come upstairs to find more fun things to do. 

This was like a giant Lite-Brite- big chunky pegs to put into the holes. 

Lina of course found the art room ;)

.... as well as a little office/construction site room.  She was determined to climb up this ladder, but she has a major fear of heights.

She wouldn't let me help her, but she couldn't quite get up there- not because of her lack of ability; just due to her fear.  She tried many many many times, and I finally just hoisted her up there.

She had a lot of fun pulling this little rope to raise and lower the tray of building parts.

I was quite impressed with her as I told her it was time to leave.... I was anticipating resistence and flopping to the floor in protest, but instead Lina listened very well and walked nicely with me all the way around the block to where we were parked. :)  Super fun day!