Wednesday, February 29, 2012

Rare Disease Awareness

I had it brought to my attention about a month ago that Febrary 29 was Rare Disease Awareness Day & asked again what Abby had been diagnosed with 3 years ago. 

Abby was diagnosed with Charot-Marie-Tooth, which is a hereditary neurological disease.  What is even odder ... neither Stan nor I have any symptoms so we're still not sure where she "inherited" this genetic disorder from.  It can just happen, but that is not usually the case.  And at this stage in the game, we haven't done the genetic testing because it is cost prohibitive.

CMT is a progressive disease that attacks your peripheal nerves (nerves below your knees and elbows).  Currently, Abby is only showing signs in her legs and only significantly in one.  Because of CMT, she cannot control her big toe.  You may be able to sit there and pull your big toe up towards the sky ... Abby's simply hangs there.  Which can make it difficult for her to put on her shoes.  She also walks on the outside of her foot and sprains her ankle easily.  She has had a couple doozies over the last couple years.  She currently wears an ankle brace for support which helps tremendously.  Some day ... she may have to also progress in to orthodics, but for the time being this brace does the trick. 

I could continue on and on with much more :).  Our neurologist, Dr. Yang, is awesome.  We see her once a year & she has assured us there are only 2 things in life that Abby will never accomplish ... 1. She will not be a marathon runner and 2. She won't be a broadway dancer.  Beyond those two ... Abby will still be able to accomplish whatever she wants to in life. We are fortunate ... if there is a form of CMT you would wish to be diagnosed with, that is Abby. Every year when we go to Children's I am reminded of this.  My baby girl can walk, she can run, she can hop, she can skip & jump.  Many of the other children we see come in to their appointments confined to wheel chairs & struggle to even walk up and down the hall for the myriad of people we see at the checkups.  Each year we consult with Dr. Yang, we see physical therapists, we see occupational therapists, we see representatives from The Muscular Distrophy Association & a few other areas I can't even remember.  

Sunday, February 26, 2012

Lovin' this new calf

Abby's calf out of her heifer.  Her choice whether she will sell it or keep it (it's a heifer).  AND both of her brothers want to buy it ... it could be very interesting at our house fighting over this little beauty.

Saturday, February 25, 2012

Nicole vs Dane

Loved watching Nicole & Dane play against each other today at Little Dribblers. They showed no mercy on each other & are both doing a very nice job on the bball floor

Friday, February 24, 2012

Basketball Season

Mason played in his final JV game of his Freshmen year at Hill City ... After getting off to a very slow start, they ended up winning :)

Friday, February 17, 2012

Spelling Bee

So proud of Nicole for competing in the Logan County Spelling Bee this morning against other 5-8th graders.

Thursday, February 16, 2012

Little Dribblers

Nicole & Dane are both doing Little Dribblers this year & played during the MS games

Thursday, February 2, 2012

1st Place

JV Basketball Tournament
Oakley vs. Colby 41-28
Oakley vs. Cheylin 53-27

Wednesday, February 1, 2012


There was just something about listening to Abby read a book to Mia about Puppies .... and Mia sitting there listening to the story that just made me have to capture the moment.  ADORABLE