Day 3...Types of Down syndrome.

There are 3 types of Down syndrome. I'm just going to give a simple explaination as to what they are and how they occur because if I had to use all the scientific terms I would have to do some research for the correct words for cell division such as meiosis and mitosis.

The most common type is called Nondisjuntion in which about 95% of those with Ds have. This occurs because of an incorrect cell division in either the egg or the sperm right when conception occurs or even before the two even unite. One will have 24 chromosomes instead of the usual 23. So when the egg and sperm unite and one has 23 chromosomes and the other has 24 there is an extra chromosome there and if it happens to be an extra 21st chromosome then Down syndrome will occur. The cells will continue to do their cell division thing over and over again and each and every time this happens that extra 21st chromosome is copied and transmitted to each new cell. Nondisjuction is where EVERY single cell in the body has the extra copy of that chromosome.

3-4% of those with Ds have Translocation Trisomy 21. This happens when the extra 21st chromosome is attached to another chromosome, usually number 14 or another 21st. About 1/4 of Translocations happen during fertilization. The other 3/4 are inherited from a parent. This is the only type of Down syndrome that can result from a condition in a parent's genes.

Lastly, about 1% of those with Ds have Mosaicism. This happens when an incorrect cell division occurs in one of the earliest (but not the first) cell divisions AFTER fertilization. Since it was not the first cell division and there were already some normal divisions that contain the normal amount of chromosomes then not all cells will contain an extra copy of the 21st chromosome. So not EVERY cell in their bodies have the extra copy like the other two types.

The only way to determine what type someone has is to do a Karyotype, which are pictures made from blood samples. The blood samples are cultured, allowed to grow in a petri dish. Then the chromosomes are isolated by a microscope and then grouped into pairs and numbered according to size. There is a picture of one on my Day 1 Challenge.

Joey has the Nondisjunction type...every cell in his body has an extra 21st chromosome. There was some debate between some people as to whether Joey had Ds or not so we had a Karyotype done. I'm assuming Isaiah has the same type also.

Blogging Challenege...Day 2.

HISTORY OF DOWN SYNDROME. I do not take the credit of this information. I copied/pasted from a website. I thought it was very interesting and even learned more myself. I didn't want to leave anything out.

The Ancient Early History of Down Syndrome
The earliest historical evidence of Down's Syndrome might be found in statues made by the Olmec people. The Olmecs were a tribe who lived in Central America between 1500 BC and 300 AD.

Archeaologists have found a large number of figurines that closely resemble a child with Down's Syndrome, featuring round, puffy faces, slanted eyes, epicanthic folds on the eyes, a short nose with a broad flat bridge, and obesity. We know these figurines must have come from somewhere in real life, as it is miserably difficult to produce quality art representing humans without a visual reference.

The Developing Classification of Down's Syndrome
The first clinical description of Down's Syndrome in history, was written and published by John Langdon Haydon Down (1828-1896) in 1866. Down was the superintendent of the Earlswood Asylum for Idiots in Surrey, England for many years.

This institution cared for children with mental retardation, which gave Dr. Down plenty of time to study people with various disorders. He made the first distinction between children who had been labeled "cretins" and children he labeled "mongoloids". These two designations were later found to refer to congential hypothyroidism and Down's Syndrome, respectively.

He labeled the children with Down's Syndrome "mongoloid" because of the highly prejudiced and mistaken beliefs about ethnicity that was historically prevalent at that time. He adopted his classification system from a dissertation by an early anthropologist named Blumenbach who described the divisions of the human race as Caucasians, Malay (Native Americans), Ethiopians (Africans), and Mongolians.

Though Down's clinical description of the syndrome was accurate, his belief that people with Down's Syndrome suffered from arrested ethnic development was clearly mistaken. This belief was mostly based on the tendency for people with Down's Syndrome to have an epicanthic fold of the eyes.

The term "Down's Syndrome" seems to have originated in Russia, where Mongolian people actually made up a portion of the population (and didn't take too kindly to the classification).

Despite his mistaken beliefs about ethnicity, Down was well known for his progressive thinking regarding learning disabilities and his efforts to improve the quality of life for his patients with training programs and research into the abilities of people with Down's Syndrome.

Progress from Discovery of Down Syndrome to Now: The recent history of Down's Syndrome
Keep in mind that the specific cause of Down's Syndrome was historically impossible to prove until doctors got the capability of doing direct genetic research. At first, many researchers thought that Down's Syndrome was due to a kind of thyroid disease or a persistent infection such as tuberculosis or syphilis.

In 1896 Telford Smith noted the resemblances between Down's Syndrome and congenital hypothyroidism and theorized that they were two facets of the same problem. He also reported an improvement in the physical and mental condition of people with Down's Syndrome when given thyroid treatment.

Today we know that Down's Syndrome is caused by genetics while congenital hypothyroidism is often a product of iodine deficiency, but the ability to find these causes have only been available since the middle of the twentieth century. The most probable reason for the improvements that Dr. Smith noticed was that his patients had both Down's Syndrome and hypothyroidism.

We know today that people with Down's Syndrome often have thyroid problems of one kind or another, but they don't all have hypothyroidism. New laboratory techniques allow us to accurately identify and effectively treat the section of the population with Down's Syndrome and hypothyroidism together. However, this belief that all people with Down's Syndrome ought to be given thyroid treatments persisted until 1969.
Questions about the relationship between Down's Syndrome and thyroid problems persist in research even today. Modern researchers are questioning the relationship of thyroid problems in adults with Down's Syndrome to the occurrence of both Alzheimer's disease and zinc deficiency.

The next major point about people with Down's Syndrome came from Dr. Brushfield in 1924 with his identification and classification of "Brushfield spots", the white or grey spots that often appear on the irises of people with Down's Syndrome.

Dr. Waardenburg and Adrian Bleyer - 1930's
The idea that genetics might contribute to Down's Syndrome was suspected as early as 1932 when it was suggested by a Dutch opthalmologist named Dr. Waardenburg. In 1934 Adrian Bleyer, an American, suggested the possibility that Down's Syndrome was due to the triplication, called a trisomy, of a chromosome. Unfortunately, the equipment to test these theories did not yet exist although time has proven these two men right.

Patricia Jacobs and Jerome Lejeune - 1950's
Patricia Jacobs in England and Jerome Lejeune in France reported an extra 21st chromosome in the DNA of people with Down's Syndrome almost simultaneously in 1959, even though they'd been working totally independently. The time, equipment and funding for this vital research was finally all available simultaneously.

Dr. Polani and Dr. Clarke - 1960's
In quick succession, the research team under Dr. Polani discovered that some instances of Down's Syndrome were due to translocation in 1960 and the team under Dr. Clarke reported the first identified cases of mosaic Down's Syndrome in 1961.

The rise of Institutionalization for those with Down Syndrome - still in the 1960's
While the new research and understanding of the causes of Down's Syndrome were wonderful, some of the side effects were not. The ability to genetically test newborns for Down's Syndrome led to an era where almost all babies were institutionalized as soon as possible before their parents bonded to them. Institutionalization was considered the best option for these children and their families at the time, and it would take more research yet to prove that basic cultural assumption wrong.

Dr. Stedman and Dr. Eichorn - still in the 1960's - the argument against the Institutionalization of those with Down Syndrome
In 1964 a pair of scientists named Dr. Stedman and Dr. Eichorn studied and described the negative impact that institutionalization had on children with Down's Syndrome. During their studies they found that the lack of a significant, continuing caregiver and the general lack of stimulation provided by the institutional environment was lowering cognitive ability even further than Down's Syndrome did by itself.

This breakthrough convinced doctors that hospitalized and institutionalized children have emotional needs as much as any other child, that they responded better to care when those emotional needs are met. It also led the medical community to understand that a multidisciplinary approach was necessary for children with all kinds of disabilites.

Eventually a new specialty of medicine developed just to handle these care issues called developmental pediatrics. This new specialty was created to train pediatricians to handle the specialized needs of children who are developmentally challenged.

Mongoloid, Down Syndrome or Down's Syndrome - still in the 1960's
In related news, the term "mongoloid" finally came under fire from Asian genetic researchers and the parents of children with Down's Syndrome in the 1960's.

Once the Mongolian delegate to the WHO asked that the term no longer be used, it was dropped in favor of "Down's Syndrome" on an international basis.

Later on the medical community in the United States voted to drop the possessive in the name and just call it "Down Syndrome" because Dr. Down neither owned or suffered from the syndrome.

The PARC Trial - every child had a right to a free and appropriate public education program, regardless of mental ability - 1970's
The 1970's were a time of great progress for people with Down's Syndrome. In the United States, 1972 was a landmark year when the PARC case came to trial. The result was a declaration that every child had a right to a free and appropriate public education program, regardless of mental ability. Similar rulings were taking place all over the world.

In 1973 parents and professional caregivers of people with Down's Syndrome came together to form the Down's Syndrome Congress devoted to increasing the level of care and the possibilities for people with Down's Syndrome.

The end of the automatic push for the Institutionalization of those with Down Syndrome - Still in the 1970's
As the belief that institutionalization was best vaporized and children with Down's Syndrome started living at home in greater numbers, the medical profession as a whole realized they were going to have to provide to this patient group on a wide basis. Clinicians started to pay more attention to the basic health needs of these children, expanding into areas such as cardiac, gastrointestinal and auditory care among others.

Because of this response from the wider medical base, advances came quickly in the treatment of congenital heart disease, surgical repair of the gastrointestinal tract, and the treatment regimens necessary to deal with immune problems and the resultant infectious disease. These basic medical / treatment advances have served to dramatically increase the lifespan of people with Down's Syndrome.

Down's Syndrome Preventative Medical Checklist - 1980's
Medical care provided in a multitude of communities eventually led to the development of the "Down's Syndrome Preventative Medical Checklist" in 1981.

This special protocol checklist presents specific medical management suggestions for doctors treating people with Down's Syndrome. It's still in use today and is updated every two years with the latest findings.

The History of Down Syndrome in Conclusion
In the last century of research for people with Down's Syndrome, we've managed to go from complete mystery to awareness of the basic cause and effects of the disorder.

Historically, we've gone from seeing people with Down's Syndrome as little better than animals to full, real people whom we love and who love us back.

Instead of putting them in institutions for life, we've learned that they can be our co-workers, partners and friends.

We've learned so much in the last century, and we look forward to a future that grows ever brighter.

Wow! If you made it this far...thank you. Fortunately, for the children who are lucky enough to be born here in the USA, they are either taken home by their birth parents or given up for adoption. Sadly, the abortion rate of prenatally diagnosed Down syndrome is about 90%. That is HUGE and it is even sadder that there is a waiting list here in the USA for adoption of kiddos with Down syndrome. If only those mothers/parents would choose LIFE and allow another family to raise and love that gift. Unfortunately, for the children born with Ds in other countries, the VAST majority are left at the hospital and then put into an orphanage and then later transferred to a mental institution, if not adopted, where most will die within one year of entering it. Another "fortunately" over in Eastern Europe, particularly parts of Ukraine there have been some great advances in that they've started support groups and teaching centers to educate parents on how raising a child with Down syndrome is very do-able. Hopefully there will be less children entering orphanages there one day soon.

Ok...I better stop here as I could go on and on.

Down Syndrome Awareness Month.

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October is Down Syndrome Awareness Month and I'm taking the challenge of blogging everyday for 31 days..."31 for 21". Well, realistically I will try for 21 days out of the 31 that way I won't set myself up for failure :) I'm not promising that all these days will be very interesting...might just be something as simple as a picture but it will be about something to do with Down syndrome and the beauty that the extra 21st chromosome brings.

Soooo...since it is "awareness of Down syndrome" I will start with some facts about it for those who may have no idea. I imagine there aren't too many things in our lives where we just decide to go learn about for no particular reason. Until I received the gift of Joey back on July 22, 2005 I had no idea about the many things I have learned since then.

So here goes..."Down syndrome 101"...short and sweet.

Let's talk chromosomes...those little "wormy" like DNA things. Here is a picture...

Usually there are 46 chromosomes in every cell of our bodies. There are 23 pairs...one from each parent. There are scientific terms to what happens during cell division and "they" call it an "error...something gone wrong" during the cell division that results in an extra 21st chromosome. Those who've been given the gift of someone with this extra chromosome don't refer to this as an "error...or something gone wrong" but something totally planned or allowed by God and something so RIGHT.
Back to the picture (which by the way is called a Karyotype of Chromosomes). See where the arrow is?...pointing to the 21st chromosome?...there is where that extra gift is located. This extra chromosome is what makes those with Down syndrome look and act so much alike. And I don't mean that in a bad way because many believe those with Down syndrome ALL do this and ALL do that and ALL have this, etc. They do have many of the same characteristics and personality traits but at the same time, just like everyone else in this world, they are their own unique being and have their own individual personalities.

The medical term for Down syndrome is "Trisomy 21"..."tri" meaning 3 and "somy" for chromosomes...3 chromosomes. For short, we call it "T/21".

Since I said this would be short and since I have many more days to go I better stop here.

Isaiah's 1st Photo Shoot

He is an All American Boy!



And brother Joey's 5 year pictures...



And our "brother's forever" pictures...




***these pictures are the property of Sears and Steph Becker...PLEASE DO NOT COPY!

Exciting Weekend...Buddy Walk, Baptism, 1 month anniversary of being home!

September 18, 2010. The past few years our Buddy Walk team name has been "Joey's Army" but this year we needed a new name. I wanted to hopefully still get use out of our camo t-shirts so a friend came up with the name of "Becker Boys Battalion". Joey and Isaiah had lots of buddies join them for their day.






Sunday, Sept. 19, 2010. Isaiah's Baptism.

Becker Brothers. This was the first group brother picture since Isaiah being home. For a second I thought there was a neighbor kid here when I saw how full the couch was. It's ALL good though. Noah and Austin are usually fighting over Isaiah and one made the comment that this is why we should have adopted two. I said one can have Joey but Joey isn't too in to cuddling these days...only on his time.


Godparents are Jim & Jackie Bitz.

Fr. Ross...our parish priest at St. Philip Neri Catholic Church.

Isaiah's own personalized blanket as a gift from our parish.
I would guess Isaiah is very pleased and happy with his special day. He did great. We bought his baptismal outfit in Nikolaev, Ukraine...his "old" hometown.

ONE MONTH UPDATE. Isaiah's personality has really changed from how I remember him in the orphanage. We hardly ever heard him laugh and now he laughs so easily. I've been working on him keeping his fingers/thumbs out of his mouth and he is on day 4 of finally sucking on a pacifer. He is even trying to put it in his mouth by himself...he is getting close. At night though if I don't have his hands covered he uses his thumbs. Since he no longer spends most of the day with his hands in his mouth he has finally taken interest in playing with toys! This is a huge treat to me as I thought he would have to learn from the beginning like a baby. He loves the music toys the best. He also has decided that he needs to be where the action is...if someone is playing a game on the floor he will be there shortly (or fast, depending how which form of crawl he chooses). He knows how the regular crawl works but doesn't always use it. He's been watching Barney and Signing Times with Joey and he seems to like it. I have a feeling Joey would tell him "too bad" if he didn't like it. The last couple days he's been following Joey around in the living room exploring as he goes. It is so awesome to watch this little boy who once was confined to his toyless wooden pens.

Some days (meals) when I think he is getting better with screaming after his food is gone then it gets worse again. He will bang his head on the back of highchair but as soon as I wash him up and take him out he is so happy again. I don't give in to giving him more food as he had plenty for the little tike he is.

Bathtime is a favorite. There are those times where the bath just has to be short and boy does he get angry! Thankfully he gets over it fast. When I take him in the bathroom and start running the water he gets so excited and crawls over to the tub and tries his darndest to pull to a stand by the tub...he always succeeds. He also tries his darndest to get in but thankfully he is too short yet.

This week Isaiah will be having his first well baby checkup and lots of bloodwork and some x-rays. Please say some prayers for all to go well. His brother Joey will also have some of the routine testing done too. He could use some prayers also.

***All pictures are the property of Steph Becker...PLEASE DO NOT COPY!

One week update & Welcome Home pictures.

We've been home for one whole week and things could NOT be going better. Isaiah acts like he's been living with us forever. This has been much easier than bringing home a newborn from the hospital...no sleepless nights, no colic, no spit-up clothes, no bottles, no pumping, etc. He loves his new crib and sleeps through the night and takes a long afternoon nap. Over a year ago I had finally brought myself to take the crib down and store it away. It was so hard to do and I had to fight back the tears. I got as far as taking off one side railing and I noticed how it looked like a day bed so I put a child's bed railing on the side and Joey LOVED it. I was so happy we could keep the crib and this worked up until the beginning of the summer when Joey decided ENOUGH CRIB and he refused to sleep in it as he loved the big bed. That was perfect timing as I knew Isaiah would be here soon and I didn't want to have to take it away from Joey. Of course, like most kids regress a bit when a "new baby" comes home, Joey thought he needed to use the high chair, sleep in the crib (that only lasted 1 minute) and scoot around in the walker before Isaiah did and he took all the baby toys away from him.

Speaking of toys...Isaiah is in the beginning stages of playing with toys where I have to put a rattle or something in his hand and he flings it. He was never given the opportunity to learn to play with toys. He LOVES music and will bounce and dance to it. He is starting to recognize "Patty Cake" as when I start singing he really looks at me and looks for my hands.

Everyday gets better with his "commando crawling" and he will get on his knees and rock back and forth and sometimes take some normal crawls. He did 4 crawls right in a row to get to Josh once. He is also in the beginning stages of taking steps. He will slowly and very seldom take side steps in the crib.

I think Isaiah's favorite part of the day is bathtime. Wow, I've never seen a kid get so excited in the tub. He is NOT afraid of water. I would love to see what he does in a pool.

Joey is adjusting WAY better than any of us ever thought. The first day was the worst and even that wasn't bad at all. Joey has grown up so much this summer and is a big helper to me. There are some commands I give him that I don't think he will understand and he will look at me for a second and then go do it. Isaiah gets lots of hugs and kisses from him. A few days ago I made the comment to everyone at supper time that I think Isaiah is getting spoiled. He doesn't always like being alone and will whine. Darrell was quick to say that he deserves being spoiled. I know he does but after meals everyone leaves but me and I do have other things to do. Orphanage kids have to find their own ways to sooth themselves so I am thankful he is trying to let his needs be known and that he wants/needs someone around. Now and then he will even cry when I put him down for a nap.

The strangest thing I've noticed is that he cries after almost every meal and even sometimes when I get up to get something. I'm assuming he does this because he most likely did not always get enough to eat in the orphanage. He probably never had to go without a meal but it was probably never enough to satisfy. He now knows he gets more to eat with me but still must be worried or something for him to cry. I don't give into it because I know he's had enough and I think he just needs to start trusting and realizing that he WILL get enough to eat at the next snack or meal. I PROMISE...I'm NOT starving him! I don't want him to get into the habit of overeating. I witnessed him being fed by the nanny's and no matter how small the snack or meal was he NEVER once cried for them...no one did. When their meal/snack was done...that was it...back into the pens they went. This could maybe be part of his horrible finger chewing habit...to try to fight of hunger :( It isn't the case now but those habits can be so hard to break :(

I've been asked if I'm going to teach him sign language and the answer is yes. Isaiah is still trying to adjust to this new crazy language so he will have to get familiar with English first. We try to have Baby Signing Time playing on TV alot...he enjoys it. He does babble and has some awesome sounds...hopefully that continues. Joey will most likely be getting diagnosed with Apraxia of Speech very soon...just need the official test from a speech therapist. Apraxia of Speech is where the brain can not "talk" to his mouth and tell it what to do...there is a pathway missing for some reason. This can also affect fine motor skills like writing and cutting, etc. I researched this a few years ago but was told he was too young to diagnose. I totally forgot about it as so much of my life was being spent trying to find out what was wrong with me. Apraxia needs lots of speech therapy and even then some kids never talk. Having Down syndrome makes this a greater possibility. So Sign Language will most likely be his first language. I'm so thankful I started teaching him before he turned one. He is good at it and loves learning it. I will teach Isaiah for more than one reason...along with earlier communication for himself but also to be able to communicate with his brother someday.

Isaiah has been having lots of "firsts" this week...first real fun bath with a super fun bubble machine from Aunt Mikki...




First night in his new crib...



First time in a carseat which he had NO trouble with never being in one...


First bike ride and stroller ride with his brother...



First haircut by mom...


WELCOME HOME

Our day started out leaving our apartment at 4:00am Saturday morning Ukraine time...8:00pm Friday night North Dakota time.


Then a whole lot of airplane and airport time.




And then finally our destination before our final destination...the Bismarck airport after a 29 hour travel day.







We stayed up until about 1:30am playing toys and talking at Grandma Kathie's. I must have been on a high because our bodies were still on Ukraine time...8 hours ahead.



Was Isaiah "worth the wait"???...every minute of it!!!...and this picture was taken minutes before the BIG "blowout" at Denny's.


***all pictures are property of Steph Becker...PLEASE DO NOT COPY!

We are home!

On August 22nd Isaiah Ilya Becker was carried into his new home by his daddy. My "22nd" sign from God happened again. We got our travel date on June 22nd...met Isaiah for the first time on July 22nd (also Joey's b-day) and now he came home on Aug. 22nd.

We had a 29 hour travel day and while there were some moments of frustration Isaiah did really well. I'm sure he has NEVER EVER been held so much for so long. I used a sling instead of stroller and it worked out MUCH better than I had hoped. We went from Kiev, Ukraine to Munich, Germany to Chicago to Denver to Bismarck. I could not wait to get out of Germany. Things were so spendy in the airport after spending so much time in Ukraine and getting used to the cheaper living.

We flew into Bismarck around 11:40pm and were met by friends and family. Isaiah had been sleeping on the last flight but he woke up and greeted everyone with sweet smiles. Joey wanted NOTHING to do with him. He hung on to my neck very tightly and wouldn't look at anyone. We've been talking about Isaiah for 9 months and I think reality hit and Joey was probably thinking...this kid Isaiah is really here. When we got home Sunday afternoon Joey really started warming up to him. Maybe it was because he was in his own territory. Isaiah got hugs and kisses but of course Joey had to try out all the "new" baby toys we brought out from storage first and Joey had to sit in the high chair.

This morning we went to 9am mass in Bismarck then went out for breakfast with our good friends, The Larson's. They also have a 5 year old with Ds. After raising 5 babies you would think I experienced EVERYTHING possible with being a mom but Isaiah decided to "up one" on his new brothers. He had a HUGE blowout IN a Denny's highchair. I didn't realize it until I picked him up to go change him and saw the highchair and felt my whole arm covered in poopoo. I was NOT prepared. I took him into the bathroom and started cleanup. I kept praying for God to PLEASE send my friend Laura in to help as I couldn't leave to get help. Within a couple minutes she came to my rescue. I threw away his onesie and summer shorts. AND to make this worse the Denny's women's bathroom was a BUSY place but I just minded my own business and did what I had to do.

Noah is such a good brother. He JUST hollered from the living room..."Mom, don't worry about us...I'm just keeping these two "activated". LOL. Noah likes using big words but obviously doesn't always get the right one. I think he meant "occupied".

It feels like Isaiah has been living here for a long time other than trying to get his eating habits figured out and lots of reminders to NOT leave Isaiah up on beds/couch, keep the basement door closed, etc. He doesn't crawl but he does roll and slowly gets to places he wants.

Thanks to all who helped out in any way...for those who filled our fridge with food...to my mom for staying the whole week to take my place and all the catering to the boys she did...for all the thoughts and prayers that were being said for us. It is all so much appreciated. It is so nice to be done and home...safe and sound. We feel so blessed to have been given this opportunity. God is so good.