Genetics 101

Over spring break in California, we received a phone call regarding some blood work that was done on Miles.  We learned that he has what is known as a "significant chromosomal abnormality".  This last week we were fortunate enough to get to go to the geneticist's office and learn more about what that means for him....and us.  SO, here I go..  Welcome to Genetics 101.  Pretend like you are in 9th grade Bio again, and know nothing about genetics...oh wait, that may not be too much of a stretch of most of us.  :-) 

When our bodies are knit together in our mother's womb we get one set of chromosomes from our mom and another set from our dad.  Miles' condition came about when his 18th chromosomes were sorting themselves out.  Eric had the same blood work done that Miles did and as it turns out, Miles was given a faulty chromosome from his Pa.  Eric (and therefore his identical twin, Greg, too...but more on that later) has all the right genes on his 18th chromosome- but in the wrong order.  This doesn't create any issues for Eric himself...but it can as that scrambled chromosome gets passed on to a child. 

When your chromosome from your mom meets your chromosome from your dad, they each split in half and swap halves.  (This way when you pass chromosomes on to your children you aren't passing on just your own mother OR fathers DNA...but a combination...got that?)  Because the genes Miles received from his dad were out of order, when the split and swap action happened he ended up with some genes missing in vital areas of the chromosome.

So where does that leave Miles?  It leaves him with a name for most his issues:  18q deletion or 18q-.  In other words, he's missing some genetic material on his 18th chromosome.  We can attribute his low muscle tone, flat (and misaligned) feet, narrow ear canals (thus the inability to pass a normal hearing test), lazy eye, speech and communication delays, developmental delays, and total lack of coordination to this condition.

The doctors have encouraged us to start the application for disability benefits as they anticipate that he will indeed have long-term assistance needs beyond what we may be typically capable of providing.  They encouraged us to remember that he WILL walk, he WILL talk, he WILL potty train, etc...it will just be harder and take longer than his peers. 


Now, back to Eric's twin, Greg:  he and his wife are currently due with their 4th child in August.  Seeing as identical twins have identical genes...please pray that the baby would be born healthy with a totally normal arrangement of his 18th chromosome.

We are very thankful that God has placed Miles in our family and know that He is growing us as well as Miles every day.  Thank you SO MUCH for praying for us and for Miles.  Thank you for continuing to pray.  Thank you for the meals, babysitting, calls, emails, and just general love that you all have shown us over the last several months.  We thank God for you daily....honest!!!  :-) 

Trees.

We took the kids to the park to play on the toys...they decided that playing in the trees was better.
Here's Miles and Grandpa. Two handsome dudes.

Some kids, some Grandparents, and some shadows from those fun climbing branches.

Cute girl and her pops.

Sam, smiling. Or at least that's what I asked him to do.

Ridin'

We took advantage of the dry weather and rode bikes...we rode..

...and rode...

...and fell.

A break in the silence.

We flew south for spring break again this year, and were richly rewarded for our travels with 70+ degree weather and blue skies most of the week. It was WONDERFUL. (Have I ever said that I miss California weather? Well...I do.) Here is a snapshot of some of the things we did while visit Grandma & Grandpa Viertell.

We were hosted to a morning of fishing (the kids' first time!) at Horseshoe Lake with my Uncle Goat and Aunt Sandy. They were very kind to the kigs and bought them fishing poles, little tackle boxes, and a net. They both really enjoyed their fishing experience (even if there were no fish that AM), although I think Sam literally had the time of his life. He's been asking when we'll go again...(not real soon, Son, Mommy and Daddy don't have licenses.)

Miles absoltely loved having a dog around for the week. He spent his time inside trying to show Amber his deep love for her. He loves her so much that he actually spoke what may be his first real word: 'oggie. Now of course he is home and there is no dog, therefore no 'oggie either.