The Kinfolk are Here!

Years ago we started calling Kelly and Kelley's kids The Cousins and it is still what we call them today.  And, of course, The Cousins call our kids The Cousins as well.  So, at times they get into it saying, "No, you're The Cousins.  And the reply is always, No, YOU'RE The Cousins. 

So anyway, yesterday the kids were waiting in excitement for cousins Aileen and Joe (Tim and Suzy's oldest two kids) to arrive for a visit. They are the other cousins.  As we were waiting and talking about some fun things we were going to do when The Cousins arrived,  Molly Grace and Aidan were getting confused.  They didn't know which cousins we were talking about and which cousins were going to be doing what! So, when my sister was here she refered to the other cousins as Kinfolk.  It stuck.  Yep, Suzy and Tim, you are now the Kinfolk from West Virginie.  Ha ha.  :)  Ok, we made the West Virginie part up just cause it sounded better.  We'll drop that part :) 

We are having a great time.  I am using this nice cousin visit as an excuse for my lack of blogging during the 31 for 21 Ds Awareness month.  Ha!  It's a great excuse.  Speaking of Erin.....she and Joe have hit it off!  He sat next to her at breakfast and talked with her, played with her and made her laugh.  He is SO good with little ones and I really think she gets his humor. I think they are building a little bond.  I hope to post some pictures of she and Joe, and the others, soon.  Right now Joe and Aidan are over at The Cousins for Conal's birthday party.  Which means they are in Legoland!

I do have one picture which highlights what the girls did before bed last night.....

Very perdy, huh?!

Molly Grace's Religion Lesson

As we're reading Molly Graces's religion today, she has a revelation:  "I didn't know God was a cheesehead!"

It's the Soul of our Nation That is "Deformed"

I have "met" so many wonderful people in the Down syndrome community since Erin's birth.  It is certianly one of the extra bonuses that comes with the extra 21st chromosome.  I remember a dear friend who also has a daughter with Ds saying to me, "Welcome to the family", when Erin was born.  So true!  And what an amazing group of people make up this family!

One such family member is Kurt Kondrich. He has a beautiful daughter, Chloe, who is three years older than Erin.  I have not met Kurt in person, but we are both involved with the Internation Down Syndrome Coalition for Life.

Here is a little more on Kurt, his passion regarding the dignity for all life, and a powerful article he wrote...


Kurt A. Kondrich is a 20 year veteran of the Pittsburgh police force. Six years ago his daughter Chloe was born with Down Syndrome. This motivated Kondrich to return to college to earn a masters degree in Early Intervention. After graduation he retired from his law enforcement career to become Director of Community/Family Outreach for Early Intervention in the Pittsburgh area. Kondrich read a news report last week about the Sarasota, Florida abortionist who lamented killing the "wrong" unborn child during a selective reduction procedure to eliminate a Down syndrome fetus. The father of Chloe and advocate for Down syndrome children could not sleep that night and got up at 3 a.m. to write the following response to the news article:




Targeted for Termination


This past week I read an article that disturbed me deeply concerning a Florida doctor who had his license revoked . The article stated that the doctor "lost his license for mistakenly aborting a healthy twin during a procedure targeting a deformed fetus." The doctor was "targeting a fetus with Down syndrome", and he admitted he "screwed up". Based on the facts presented in this article one can conclude that if the doctor had properly targeted the unborn child with Down syndrome and successfully terminated this twin then he would have kept his medical license.


My beautiful 6 year old daughter Chloe has Down syndrome and has brought immeasurable good and Blessings into this world, and I have observed no "deformities" about her. Parents of children with disabilities have fought very hard over the past decades to have our children fully included and accepted in schools and communities. We have made great progress with "inclusion" since the days of institutionalization, but with prenatal testing we have now entered a slippery slope that is rapidly turning into solid ice. If our society devalues the life of a person with a prenatal diagnosed disability and targets them for termination then this represents the ultimate "exclusion" and eventual "extinction".


Currently 90%+ of children diagnosed prenatally with Down syndrome are "excluded" from ever shining their bright light in a lost world that has become obsessed with perfection and unrealistic traits. If the proper practice of medicine in our culture includes the skill of identifying and eliminating a prenatal twin who fails to meet the criteria of "normal", then we truly do need a massive overhaul of the "health care" system, and it is the soul of our nation that is "deformed".

You can access the article here.

Homeschooling and Down Syndrome

I did get a question regarding 31 for 21, Ds awareness - woo hoo!  A friend is wondering if I am planning to homeschool Erin.  My answer is, absolutely, and I'm excited about it!  Since she is just three, I don't have a full curriculum for her, but we have just started using some early language/reading materials that can be found here and here.  I'll be doing plenty of research and trial and error in the coming years.  Additonally, if/when she requires outside assessments and therapy, we'll plan for that too, as we are now.  One little bonus is she is an extremely eagar learner!  She has loved every little thing we've done so far, be it reading, matching games, counting games, songs, fingerplays, videos, playdough - you name it!

I also found a valuable, free, homeschooling e-book to download.  It is called Homeschooling Children with Down Syndrome, by Amy Dunaway.  If you're interested, click here.

Today's Physics Lesson...

 As if they didn't have enough planned school lessons!  Here they go, devising their own physics lesson.

Teresa, Aidan and Molly Grace decided it was high time we had a swing in the front yard.  I suppose they tried tying the rope in the tree first, but when that didn't work, they devised this contraption...



It worked!  I'm not sure how much fun it was to stand in thetrash can but at least Aidan had fun.

And lil Seamus was watching with envy from the house....

Good Try!

Mike's brother, Andy, passed away almost 12 years ago (this November) from brain cancer.  Each year, on Sept. 27th, we like to enjoy a cake to celebrate his birthday.

This year, Andy's birthday happened to coincide with a recent spotting of a little mouse in the house.  Eeeeek!  The kids know how much I cannot stand mice.  So, Eileen and Aidan had a grand plan to rig up the cake a little bit...

Notice their creative droppings in the front right corner (chocolate jimmies)...

They did a good job, I have to admit....

So, just before we sat down to cake, I heard, "Oh, yuck!  Oh, MOM, come quick, look!!!"  Hmmm, their reaction was just a little too dramatic to convince me.  So, good try, but I was on to you right from the start, Eileen and Aidan!

The funny thing is, this little trick is sooo like something Andy would do!  He was a practical joker.  In fact, now that I think about it, I think he instigated the whole thing!  After all, Aidan Andrew is named after his uncle and he reminds us of him plenty of the time. Good one, Andy!  We love you and miss you!

Now, for my 31 for 21 post for Down syndrome awareness...

I don't know whose quote this is, but I have seen it many times since Erin's birth, always without an author.  But it's a good one...

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

A Life Like Yours - Maddie's Story

For today's 31 (days) for 21 (chromosomes) I am posting this inspriational video about Maddie. What a beautiful young lady! This is from the Catholic Archdioces of Washington. It is from a piece titled,“A Life Like Yours” On The Dignity of the Disabled and the Call to Save Them From Abortion, By, Msgr. Charles Pope. Click HERE for the link to the entire article.

Karyotype Images and Types of Down Syndrome

For today's T21 tidbit, I'm reposting the image of Erin's actual chromsomes.  It is called a karyotype image and it shows a picture of the chromosomes found in one of Erin's cells.  I never thought I'd be looking at my child's chromosomes, but now that we have the image, I find it pretty cool!  If you click on the image, you'll see that the pairs of chromosomes are numbered.  On the bottom, you'll see the smallest chromosomes, number 21, with three copies.

There are actually three types of Down syndrome, and karyotyping, is used to determine which type your child has. The most common of the three types of Down syndrome is called Trisomy 21. With this type, the extra 21st chromosome is found in every cell in the body. Translocation Down syndrome is the second most common type. In this type of Down syndrome, a part of chromosome number 21 breaks off and attaches itself to another chromosome, often chromosome number 14. This causes all cells in the body to have the extra piece of the 21st chromosome. When a child is born with this type of Down syndrome it could mean that one of the parents is carrying chromosomal material that is unusually arranged. The third type of Down syndrome, and the least common, is called Mosaic Down Syndrome. In this type of Down syndrome the separation of the 21st chromosome occurs in one of the first few cell divisions AFTER fertilization. This causes the baby to have some cells with 46 chromosomes and some with 47. Because of the fact that not all cells contain the extra chromosome 21, the range of Down syndrome features will depend on the ratio of cells with 46 chromosomes to those with 47 chromosomes.

We assume that Erin has Trisomy 21. Four of her cells were tested after birth, and all four had 47 chromosomes. We know for sure that she does not have Translocation Ds. Since her birth, the protocol to rule out Mosaic Ds is starting to change. Many doctors are now requesting that more cells be looked at - up to 100-200. They say this many are necessary to rule out Mosaic Ds. And the cells should come from different parts of the body (skin, tissue, blood).  Because most labs, in the past, have only tested a few cells, some theorize that Mosaic Ds is actually more common that previously thought.

Many parents really don't care which type of Ds their child has...but I find it all so fascinating :)  We sure love our girl with designer genes....designed by God.

Be sure to ask a question if you have any, about Ds or Erin, during  Ds Awarness month.  I'd be more than happy to put my teacher hat on :)

My Sweet Squishy Girl

One of the most endearing traits that we love about Erin is her soft, huggable, little body.  She is a bit squishy.  She can do the splits with ease, and all her joints are super flexible.  My kids say she has superpowers which allow her to bend and fold in any direction (think Incredibles here...LOL).  Often, this is one of the first things that others notice about Erin.  We call this low-tone.  The official word is hypotonia.

Here is the definition of hypotonia:

Hypotonia is a medical term used to describe decreased muscle tone (the amount of resistance to movement in a muscle).  It is not the same as muscle weakness, although the two conditions can co-exist.  Hypotonia may be caused by trauma, environmental factors, or by genetic, muscle, or central nervous system disorders, such as Down syndrome, muscular dystrophy, cerebral palsy, Prader-Willi syndrome, myotonic dystrophy, and Tay-Sachs disease.  Sometimes it may not be possible to find what causes hypotonia.  Infants with hypotonia have a floppy quality or “rag doll” appearance because their arms and legs hang by their sides and they have little or no head control.  Other symptoms of hypotonia include problems with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes.  Hypotonia does not affect intellect.  However, depending on the underlying condition, some children with hypotonia may take longer to develop social, language, and reasoning skills. 

Hypotonia can effect all the muscles in the body, including the ones you don't normally think of, such as intestinal muscles.  Kids with Ds can have hypotonia in some muscles, but not in others.  One area where hypotonia shows up in almost all kids with Ds is the mouth - the oral muscles.  That is one of the main reason why those with Ds have speech delays and difficulty with enunciation.  Have you ever tried to hold a conversation after you've been given novocain for dental work?  That is a pretty close representation of how a lot of kids with Ds feel when trying to speak!  Isn't it amazing how well they do, given this information?!

The Divine Chromosome

Trisomy 21 is the official, or medical name, for Down syndrome.  Tri refers to three and somy refers to chromosomes.  Therefore, Trisomy 21 means three copies of the 21st chromosome. What does that mean for Erin?  It means each cell in her body has an extra 21st chromosome (the smallest chromosome in the human body), making a total of 47, rather than the typical 46. Oh, and I should mention that all of the chromosomes in a person with Ds are perfectly normal, with no abnormalities.  It is simply the case that there is an extra one. In most cases of Ds (there is always an exception), the extra chromosome is present before conception, coming from either the mother or the father.  While the odds of having a baby with Ds increase slightly with age, 80% of children with Ds are born to women younger than 35 years of age. In many ways it is like winning the lottery!  I will try to remember to post an actual picture of Erin's chromosomes in a later post - pretty cool!

So, for today's Trisomy 21 tidbit, I'll post one of my favorite articles....

http://www.downsyndromecentre.ie/blog/2010/jun/09/down-syndrome-and-evidence-divine/