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!

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.

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 :(

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.

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 :(

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.

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.