Monday, November 22, 2010

Isaiah's 3 month update.

Today it has been 3 full months since Isaiah was carried through our door and in 2 days it will be one year since we officially committed to him on Reece's Rainbow.

The biggest change since Isaiah has been home has been less time alone for me but I'm totally fine with that as being a mom is my ministry and it continues to make me "die to self" more and more which helps keep me "grounded" from conforming to the world. "Do not conform any longer to the pattern of this world, but be transformed by the renewal of your mind, that you may discern what is the will of God, what is good and pleasing and perfect." Romans 12:2

Isaish is starting to become a little explorer...not so much on his own yet but with his "partner in crime". His favorite person in this house would have to be Joey. They can make each other giggle and giggle and Isaiah loves following him around.

It has been 3 weeks since he got his glasses and what a difference they've made. It was so neat to see him look around when he first got them. I'm sure he felt like he was in a whole new world. His eyes must have been pretty bad as he hardly ever takes them off. He has been braver with trying to walk behind his "walking wagon". Still has a long way to go before walking but every little bit helps. He's been doing good with finger foods and even some baby steps with chewing. I got braver to try different chunkier foods which are nearly impossible to swallow as soon as they enter his mouth. He will choke/gag now and then but I think we need to go through this stage to get to being a good chewer. He still cries/screams after most meals. This habit can take a hike anytime now...3 months is long enough but I have a feeling it isn't going anywhere anytime soon :( He is not a picky eater which is a blessing. I sit between Joey and Isaiah and I have to fight to get Joey to take bites and then turn to Isaiah and fight to make him slow down (well, I'm feeding him but trying to limit his bites to slow him down...he still prefers FAST feeding).

His teeth grinding is a day to day thing...some days I hardly hear him grinding but then the next he grinds all...day...long. The chewing finger/hands habit has gotten much better and he has even cut down on his need for his nuky. Bedtime and naptime are a must though and he will suck his thumb then too. I can handle that. He is a very noisy sleeper as his suck is so loud but he is a good sleeper.

Isaiah is getting more and more into toys but has a long way to go here too. But from how he started out to not even knowing how to hold a toy he has come a LONG way. He loves music and will go pull to stand up by the TV.

He loves people and loves to be held and cuddled. We had a BIG milestone about a week ago...he learned to clap on his own. We worked hard on this and it finally paid off. He is so proud of himself. He knows "So Big" too but won't lift his arms alone but if he is holding our hands he will lift ours up. He is understanding some English obviously like clap, so big, Isaiah, no no, stop...I'm sure he knows way more. Some days he babbles and babbles and then the next not so much. His consonant sounds are beeeeutiiiiiful!!!! I say this because I haven't heard them from Joey since he was one. :( :(

Still trying to figure out his constipation issues. I just can't get a system down to get him going daily but I will not give up. I started putting him on the potty chair as his peditrician thinks he is withholding. Much to my surprise he goes pee almost everytime and even has pooped about 5 times. I really think he was put on a potty chair in the orphanage as he acts like he's been on one before. His stool culture came back really good...NO parasites or anything icky!!! His bad breath has gotten much better too...most days I don't notice anything unless after sleeping or not eating for a while. I read how constipation can cause bad breath and since I brought in the "big dogs" (Joey's old way of enemas) to help break up some major backups things really improved!!!!!

He had his big hearing test last week which turned out good. The health of his ears was awesome. WhooHoo!!! Two kiddos with Down syndrome who both have great ears (at this point) is a huge blessing. Everything tends to be smaller in kids with Ds and many are prone to ear infections and needing tubes. Joey had 1 or 2 infections in his over 5 years of life...not bad.

I painted this shirt when Josh was a baby (19 years ago) and all the boys wore it. It says "My name is not NO NO".
He was just going to clap. By the way, he is standing up against the fridge and balancing really well. It was the first time I did this and will do it more often to help strengthen his legs. This week he has a PT consultation on possibly getting ankle braces or shoe inserts for his weak ankles.
A roll of garbage bags they found in the bathroom.
Isaiah's "partner in crime".

Somedays it is hard to believe that it has been 2 years since I first saw this little boy dressed in pink and now he is crawling around OUR house.

Sunday, November 21, 2010

My Thanksgiving baby turned 9 today...

...and what an entry into the world he made. One morning, 3 weeks before my due date, after the 2 oldest kids left for school on the bus I thought my water broke but it turned out I was bleeding...and not just a little. It was enough to warrant a call to 911 which sent out the Napoleon Ambulance. They took me to a nearby small town hospital. I was then transferred from that hospital via their ambulance to a bigger town hospital but getting farther and farther away from the hospital I needed to be at. After bleeding was slowed down I was finally transferred one last time to the hospital of choice and Noah was born the next morning. After he was born I needed an emergency surgery to stop the bleeding which normally should stop on its own after birth. I will never forget the look on my doctors face when he told me he would be right back after he went to talk to someone (he consulted with another doctor on what to do). He came back and I was taken into surgery within minutes. I was THE happiest mom on earth when I woke up ALIVE and heard Noah was alive and doing well also. I never got to hold Noah right after he was born as he swallowed blood and needed extra care and attention. This was the day my adoption dream started as I was NOT going to go through THAT life threatening experince again.

God had other plans and sent us Joey a few years later....which then led to Isaiah (that whole story is in the beginning of my blog posts). I love putting God's puzzle pieces together...connecting the dots.

Back to Noah...he was a very naughty baby. We always said he came into the world causing trouble and it just kept continuing. We joked that maybe we should have him rebaptized as maybe the first time something went wrong. I would hardly ever let anyone babysit him as I felt so sorry for the babysitters. I thought only a mother should have to endure what he had to offer back then. MANY times the ONLY thing that worked was to put him in his baby seat in front of a TV with a static station turned up really loud. I love the teeny tiny baby stage but I wished that away many times.

Fortunately things changed as time went on. I've been on so many "adventures" with Noah as his love of life and having fun and his never ending imagination takes us many places. Being the 4th boy born to our family he is the first to like action figures...it started out with dinosaurs...then to Spiderman and super heros...then just any ol' "guy". Those are still his choice of toy to this day.

He also loves sports. His first career of choice was going to be either a pro football player or basketball player or boxer, etc. That changed into being a priest. He talked about that for a couple years. He would make a good one who could talk off the cuff no problem. When asked a question he never has to think about an answer. He loves talking. I was his kindergarten CCD teacher and before I was done even asking a question his hand was high in the air. Since Isaiah came home Noah changed his mind and decided he NEEDS to have kids and really wants to be a dad. He knew priests do not get married so he thought he could just adopt kids then but when he found out that would not be possible he decided he couldn't be a priest. He recently told me that his family is going to live in Napoleon because he just can NOT live far away from his brothers Joey and Isaiah. And that his family is going to come to my house every Sunday for dinner because he wants his kids to be with their Grandma. He also asked if I could give him a key to my house like my mom gave me one. His mind never shuts off.

Noah has a huge heart and love for kids. For as much as he has to help me with his 2little brothers he doesn't complain a whole lot. And what amazes me the most is that nearly everyday he asks me to "get" another baby.

Just a few pictures throughout the years.

Monday, November 1, 2010

SAVING VIKA

Who is Vika?? She is an adorable little girl who was recently transferred out of a baby house into an institution. She is only 4 years old. She does not have Down syndrome but cerebral palsy which appears to only affect her lower legs. While we were visiting Isaiah in the orphanage we were always on the lookout for other kiddos who were listed on Reece's Rainbow. I was SO excited to see her being pushed in a stroller outside one day. I was SO nervous to go "talk" to the nanny as we were suppose to basically "mind our own business" but Darrell gave me the push to go...so we did. The nannies were very nice and allowed me to take some pictures. Vika, however, would not offer a smile as she was too busy sucking on a piece of a leaf. She has the most gorgeous eyes. She had casts on both legs due to a surgery which was offered free of charge by an organization from Switzerland.

If Vika is not adopted soon she will remain in this institution for the rest of her short life and most likely not be offered anymore medical care. Please consider helping her so this does not happen. The number one thing that prevents a family from following through with a calling to adopt is money. A few families who've adopted from this orphanage or will soon be are joining forces to try to raise her a full grant. This has happened a few times in the past where a full grant is raised in only a few short weeks and within a few days of that happening a family commits to adopt that child. It is a beautiful, wonderful thing that God is DEFINATELY involved in. We, alone, can not raise a full grant ($25,000) but God has a way of softening hearts and opening eyes to help the least of these. If after reading this you feel called to help in a small way (but HUGE to this child) click HERE and you will be taken to Vika's own blog. That is where you will find a chip-in to donate to help save Vika. It is a very easy process with just a few clicks of the mouse.

If after reading this you do NOT feel called to help save Vika but would like a chance to win a $800 gift card from Best Buy click HERE It will take you to the same blog and same chip in. The same few clicks of the mouse and then comment in the comment section your name and number of chances. This is a great giveaway just in time for some Christmas shopping. $5 for one chance or $25 for 6 chances. Can't beat a deal like that especially if you happen to be the lucky recipient of that great gift card.

No gift is too great or too small. All donations are tax deductible as they will automatically go to Reece's Rainbow and will be given to the family who steps up to commit to Vika.

THEN if you would so happen to feel called to link this blog or Vika's blog to your Facebook or email to family/friends that would be another AMAZING gift you would be giving. Please help spread the word. The families joining forces only know so many people but those people know people and so on.

Here is a picture we got when we saw her in July, 2010.

Your act of kindness will not go unnoticed.

Please consider donating so Vika can be the little girl running to her new parents like in this video and NOT the little girl at the end of the video.

Hope is Fading – Orphan Sunday from Allan Rosenow on Vimeo.

Sunday, October 24, 2010

Amazing young man....Day 24.

His message could NOT be any closer to the truth to what happens everyday...everywhere...and it is THE biggest reason why we wish we could protect our 2 little boys from the cruelty of people with no compassion for those who are less-abled. I know the video is quite long but it is so worth it...at least I think it is ;) You might learn something.

Saturday, October 23, 2010

I failed my 1st challenge :(

BUT...I made a goal to do at least 21 out of 31 days and IF I do one every day for the rest of the month I will only have failed by ONE. I will try my best even if the posts aren't directly related to information about Ds.

We have a BIG milestone happening for Isaiah. Two frustrating issues with him were his lack of doing anything with his hands except chewing/sucking on them and his lack of patience while eating. He is slowly but surely coming around with doing more with his hands and will hold toys now and actually look at them and put them in his mouth and even attempt to push buttons to get music to play. He has a long way to go to catch up to age appropriate but he will get there...on his own time.

A couple days ago I did something I've never done before with any of my kids except for birthday cake. I confess...I don't like big icky/sticky messes all over kids or highchairs or floors but I sucked it up and went for it in hopes of Isaiah trying to pick up pieces of food to finger-feed himself.

Yogurt...to start off with even just licking or mushing his hand to his mouth to taste food. He had NO desire to even try until I got it started and even then it took me to force his hand into the yogurt and to his mouth. And then I added puff cereal snacks to the mix and he was able to grab them with his fist and work them into his mouth.
Today I gave him chunks of bananas and prunes (he still has a major constipation problem going on) and he was much more willing and successful at it. He was even able to grab the puff cereal much easier and had more success getting them into his mouth. He EVEN attempted to chew everything which is HUGE for him. He has no idea what the concept of "chewing" means and EVERYTHING goes straight down...big chuncks and all. Very seldom will he choke/gag. I've never seen anything like it.

Tuesday, October 12, 2010

God's Plan...Day 12.

When Joey was a few months old I found an amazing group of friends online that belonged to a group we called "T/21 online". It fell apart a few years later, probably due to Facebook and MySpace...not really sure, but I'm so happy that we are coming back together through Facebook. Today the life of a little girl named Renee who had Ds and cystic fibrosis was celebrated at her funeral (a funeral is a celebration of one's life...as sad as the day is we should also remember all the good and celebrate the days we had with a loved one). She was only 10 and I remember her so clearly from T/21 online days. I can only imagine the pain the family is experiening as they now start their new life...their new normal...after the death of their sweet daughter/sister.


This video was posted by a member of T/21 online today and I just had to share.



***Update on Isaiah's eye appointment. He has farsightedness which will require glasses. He will also need to be seen in 6 weeks by another specialist as the eye doctor today noticed his optic nerves are larger than normal. He's not sure what this means...if anything...but wants it further looked into.

***Also patiently waiting to hear about the neck x-rays that were sent to Minneapolis for both Joey and Isaiah.

Monday, October 11, 2010

Vikings...Day 11.

Ok...this has nothing to do with Down syndrome. My original plan for today's post fell through and JUST when it started "falling" Noah started screaming with excitement that HE has the same number YES! YES! YES! I'm NOT at all a Vikings fan (or for that matter a sports fan) but I had a feeling it had something to do with someone named Randy Moss.

I noticed Noah was wearing a certain shirt and asked why...all he said was...VIKINGS SPIRIT!


Sunday, October 10, 2010

10-10-10....Day 10.

Oct. 10, '10...only happens once every 100 years. Most of us will only see that happen once in our lifetime.

I thought I would post the Top 10 reasons why having a loved one with Down sydrome ROCKS!...our reasons anyway.

#10...We will have a buddy (well 2) for life.

#9...We will have a reason to act crazy and dance around the kitchen with guitar wooden spoons for much longer.

#8...We are learning a 2nd language...Sign Language.

#7...We will have someone to hold in our laps and carry on our hips longer.

#6...We will have more years of someone being TOTALLY excited when you walk in the door.

#5...We get to meet some amazing families even if just via the internet.

#4...Hugs and kisses never seem to run out.

#3...We are taught to forgive more easily.

#2...We are taught to practice patience everyday.

AND...

#1...We will always be loved unconditionally. Yes, we will always be loved that way by God too but people...not always so much.

Saturday, October 9, 2010

More Alike Than Different...Day 9.




By the way...if you're looking for "Day 8"...you won't find it because there isn't one :(

Thursday, October 7, 2010

Gianna Jessen's Story...Day 7.

If you haven't taken the time to watch Gianna's story yet (I know it's been around Facebook lately) please do. I don't think you will regret the 15 or so minutes it takes to listen. I know this is Down syndrome awareness month and her story has to do with abortion but in today's world Ds and abortion go hand in hand...sadly. With the new advances in medical technology and all the new prenatal tests being offered to women to test for Ds or other chromosomal abnormalities the abortion rate for those whose tests come back positive/or highly likely is 90%.

I got to thinking today after a conversation about the test women can have to see if they carry the genetic gene that gives them a super high chance at getting breast cancer. If the test comes back positive many of these women choose to have their healthy breasts removed before cancer strikes. This is a great advancement in medical technology for those who have concerns and take this path...a test and then treatment to prevent death...to save a life.

Then in the same medical advancements arena you have the newer prenatal tests to check for Down syndrome...and then, probably depending on how much one value's life, a decision will be made if the test comes back positive for something the parent did not want...the decision of life or death...abort or not to abort. 90% choose abortion.

A test to save lives in order to prevent breast cancer and a test to end life in order to make ones life easier...the life of the parents whose future child MAY have been born with Ds. I say MAY b/c a test is a test...there are no guarantees or certainties. However, there is ONE certainty that is fact through and through...God created life...ALL life...and designed everyone just the way He wanted. What a slap in His face when we reject what was given to us by doing HIS job and ending the life He created.

Shouldn't all medical tests be for one reason and one reason only...to try to SAVE lives? I think so.



Wednesday, October 6, 2010

Down Syndrome Creed....Day 6.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace


I first read this creed/poem when Joey was a teeny tiny newborn and Ds was SO new to my world. I cried many times over the words of the creed because it seemed like the baby/child/teen/adult with Ds "reading" these words was pleading to the world to just accept them as they are and who they are. They are God's PERFECT creation just like anyone else. God makes NO mistakes. I believe "the least of these" were possibly put on this earth to test us so see how accepting we are and if we love conditionally or if we love like God does...UNconditionally. I've only been able to fully experience Ds for a little over 5 years and they have honestly been some of the best years of my life. The creed is SO true. When our typical kids would reach milestones they were so exciting to witness, like the first steps, first words, etc. But when Joey reaches milestones they are some of THE most exciting events in our lives. It is something I don't think you can fully imagine until you are in those shoes and love someone who has a disability. The majority of kids walk by age one but for Ds it can come much later. Joey started around age 2 and Isaiah is 2 1/2 now and is far from walking. I imagine the day Isaiah takes his first steps will be even more exciting than when Joey did. This past summer Joey first learned to jump. He wanted to jump in the WORST way for SO long. He would try and try and try but his little body and weak muscles from low tone would just not allow him to. But the day his little feet lifted off the ground...both at the same time...I think we all had tears in our eyes, including Joey. I don't know who was happier and prouder...him or us. He was SO proud of himself that he jumped and jumped and jumped and jumped from one end of the room to the other. I have a video but I can't get it to upload :(

Tuesday, October 5, 2010

Common Medical Issues...Day 5.

My intention of this post is in NO way to try to scare anyone considering either adoption of a child with Ds or especially in NO way to make someone consider terminating a pregnancy due to suspected Ds of their unborn child. There may be a lot of scary medical issues that can occur in those with Ds BUT all these issues can happen to ANY newborn baby, toddler, young adult, and grown adult...Down syndrome or not.

My ONLY intention is to spread some awareness and hopefully teach someone something.

Babies born with Ds can be born just as healthy as many other children but they can also be born with medical issues. Some of them can be serious but thankfully due to advanced medical improvements they have a much greater chance at growing up healthy and active. The estimated life expectancy back in the 1930's for those with Ds was only 9 years old. There were many who died much younger due to major heart defects that had no cure at the time. Today many are living past the age of 50.

HEART DEFECTS... About 40-45% of those born with Ds have heart defects. There are several type of defects with the most common being an Atrioventricular Canal Defect also known as AV canal. It is a large hole in the center of the heart that allows a mixture of red oxygenated blood and low oxygen blood and then return to the lungs. This makes the heart pump extra blood to the lungs which makes the heart work harder and become enlarged. The body also receives less oxygen when all this happens. Babies usually grow very slow with this defect and high blood pressure can occur which would result in damage to lungs and blood vessels. Surgical repair is needed to help blood circulation go back to normal.

Another common heart defect is called Ventricular Septal Defect (VSD). These can be different size holes between the ventricles in which the same blood mixture happens like that of AV canals. Sometimes these close on their own and do not require surgery.

There are other less common defects such as holes between the two upper chambers (Atrial Septal Defect...ASD), problems with the heart valves, and defects in the major arteries attached to the heart.

Many times heart surgery is needed for these defects. Sometimes it is so severe that emergency surgery is needed right after birth. Other times, depending on defect, surgery may not be needed for a year or two if the hole has not closed on its own. Most children who have heart defects repaired successfully will go on to lead healthy lives.

Gastrointestinal Problems... Those born with Ds have a 10-12% chance of having some type of congenital malformation of the GI system. The most common anomaly is a narrowing or blockage of the small intestine called Duodenal Atresia. Other common GI anomalies include: 1) Imperforate Anus (no anal opening); 2) Pyloric Stenosis (blockage of the outlet of the stomach; 3)Tracheo-esophageal Fistula (abnormal opening between trachea (windpipe) adn the esophagus (food pipe); and 4) Hirschsprung's Disease (absence of nerves in the large intestine/colon. Some of these require immediate surgery to repair. GI problems usually present themselves right after birth with a variety of symptoms such as poor feeding, swollen belly, vomiting, no stooling.

Respiratory Problems... Respiratory infections are more often seen in those with the heart defects. Low muscle tone smaller canals and airways are also reasons for more issues. Sleep apnea is more common due to smaller airways and larger adenoids, tonsils, tongue or a combination of these.

Vision Problems... About 70% of those with Ds have some type of eye problems. Early detection if crucial for best chances at repair and correcting the problems. Some common problems include Strabismus (crossed eyes) which affects about 57% of those with Ds. This is an imbalance in eye muscles. Nearsightedness and farsightedness occur in 20-22% of those with Ds. Astigmatism occurs in about 22%of those with Ds. Cataracts and blocked tear ducts can also be a problem for some.

Hearing Problems... About 40-60% of those with Ds have hearing loss.

Thyroid Problems... Studies have shown that up to 54% of those with Ds have hypothyroidism. This can be serious if not detected and treated. They need to be screened yearly for this problem.

Orthopedic Problems... Increased looseness of ligaments between their bones and low muscle tone make those with Ds more prone to orthopedic problems. The most common problems are Metatarsus Varus (toeing in of the foot) and Pes Planus (flat feet). They can cause pain and difficulty with walking. Instability of the kneecap can also be an issue.

The most serious complication resulting from low muscle tone and joint laxity is the instability of the two upper bones of the back. This in known as Atlantoaxial Instability (AAI) and it occurs in about 10% of those with Ds. The lax joints allow for excessive movement between the two upper vertebrae, especially when the neck is extended or bent. They run a serious risk of spinal cord injury.

In about 1-2% of children with AAI the upper vertebrae slips and compresses and damages the spinal cord. Symptoms can include difficulty walking, increased clumsiness, neck pain, head tilt, fatigue with walking. Most children with AAI have no symptoms. They need to avoid contact sports, somersaults, trampoline exercises and other activities that cause excess stress to the neck.

Dental Problems... Those with Ds often times have dental problems such as missing teeth, delayed tooth eruption adn are prone to periodontal disease. This can lead to tooth loss.

Leukemia... This is a type of cancer of the white blood cells. About 1% of those with Ds develop Leukemia, which is 15-20 times higher than the general population.

This seems like a long list of problems that can occur but many times these do not affect their quality of life. Joey was born with a small VSD that did not require surgery as it closed on its own. It never affected him in any way. Isaiah had heart surgery due to two minor holes that never did close but he always remained healthy and his surgery was not that major. They both have the weak ankles and flat feet. Me and all my other kids also have flat feet also. Joey was born with Imperforate Anus and while at the time of learning that it seemed SO scary but today it is no big deal. He's had a few surgeries over the years to correct the defect to give him a better life. So far so good on the thyroid issues, they both recently tested negative! Joey's hearing and eyesight are fine at this point. Isaiah has an upcoming appointment with an eye specialist as he does have some issues. He will also need a hearing test to see where he stands there. Joey has been my healthiest child respitatory-wise with hardly any colds and only 1 or 2 ear infections. It will be interesting to see how Isaiah does. I don't have record of stuff like that on him. Joey passed his AAI neck xrays when he was 2 years old. I recently had them redone and he did not pass this time...in Bismarck anyway. Xrays needed to be sent to Minneapolis for a 2nd opinion. Please pray for good results. Isaiah passed his in Bismarck but I asked for a 2nd opinion on his also. Hoping to hear GREAT results soon.

I'm sure everyone knows someone who has one or more of these medical issues and they do NOT have Down syndrome. They can happen to anyone.

Monday, October 4, 2010

Characteristics and Features....Day 4.

Those with Down syndrome have low muscle tone, called hypotonia. Their muscles through out their whole bodies are usually affected. This is why they are so flexible or floppy and can bend in all directions. This affects their movement, strength, and development but does not affect their ability to grow and learn. It takes them longer to roll over, crawl, walk, jump, etc. It can also affect feeding as there are many muscles in the mouth too. There is no cure for hypotonia. Some are born with better tone than others but over time it can improve especially with physical therapy.

Facial and other features. Some with Ds have many of the features while others may only have a few. If someone has many of them it doesn't mean that they have "more Ds" nor does it mean someone has "less Ds" if they only have one or two of the features. The features do not affect their cognitive ability.

Nose...The nasal bridge might be flatter than usual. Noses are often smaller and nasal passages may be smaller also which can cause more nasal congestion.

Eyes...The eyes appear to slant upward. Those in the "Ds world" call these "almond eyes" (one of my favorite features). These slanted "oriental" looking eyes is why Down syndrome was formerly called "mongolism" after people from Mongolia. The eyes may also have epicanthal folds...small folds of skin at the inner corners. The outer part of the iris of the eyes have light spots called Brushfield spots. They are more commonly seen in blue eyed people. Vision problems tend to be an issue in those with Ds.

Mouth...Their mouths may be smaller and the roof more shallow. That along with the low tone makes the tongue appear larger and may protrude.

Teeth...Teething may start later and teeth may come in in an unusual order...eye teeth may come before front teeth, etc. Teeth may be small and in unusual shapes. They tend to have dental issues as they get older.

Ears...Ears may be small and the tops may fold over. In many the ears are set somewhat lower on the head. Ear passages may also be smaller with can cause lots of trouble with infections and hear loss can be an issue.

Head shape...Their heads are sometimes smaller than normal but that does not affect learning. It usually is not even noticeable. The back of the head may be flatter and the neck may appear to be shorter. The soft spots can take much longer to fully close.

Stature...While babies with Ds are usually average size at birth (weight and height) they often do not grow as fast as other children. There are actually special growth charts for those with Ds. Average height for adult males is 5'2" and for females 4'6". Obesity can be a problem for many.

Hands/Feet...Their hands may be smaller with shorter fingers. Many have a simian crease on the palms of their hands (one crease across it) and the pinkie finger may curve inward somewhat. Feet usually appear to be normal but most have a gap between the big toe and second toe and there is then usually a deep crease on the bottom of foot by this gap. Webbing of some fingers and toes can also happen.

Skin...Their skin if often mottled (the look of lack of oxygen and very cold).

Hair...Those with Ds typically have thin, soft and often sparse hair.

Because those with Ds share the same extra 21st chromosome that is why they tend to resemble each other as they may have many of the same features listed above. But they also have 22 sets of completely normal chromosomes which makes them resemble their parents and siblings and other family members and also may have their very own look.

Sunday, October 3, 2010

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.

Saturday, October 2, 2010

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.

Friday, October 1, 2010

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.

Saturday, September 25, 2010

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!

Sunday, September 19, 2010

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!

Sunday, August 29, 2010

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!