my boys 2012

my boys 2012
Coleman is 6 Carter is 7

What is hypochondroplasia?

Hypochondroplasia is a form of short-limbed dwarfism. This condition affects the conversion of cartilage into bone (a process called ossification), particularly in the long bones of the arms and legs. Hypochondroplasia is similar to another skeletal disorder called achondroplasia, but the features tend to be milder.

All people with hypochondroplasia have short stature. The adult height for men with this condition ranges from 138 centimeters to 165 centimeters (4 feet, 6 inches to 5 feet, 5 inches). The height range for adult women is 128 centimeters to 151 centimeters (4 feet, 2 inches to 4 feet, 11 inches).

People with hypochondroplasia have short arms and legs and broad, short hands and feet. Other characteristic features include a large head, limited range of motion at the elbows, a sway of the lower back (lordosis), and bowed legs. These signs are generally less pronounced than those seen with achondroplasia and may not be noticeable until early or middle childhood. Some studies have reported that a small percentage of people with hypochondroplasia have mild to moderate intellectual disability or learning problems, but other studies have produced conflicting results.

Me and Carter and Coleman

Me and Carter and Coleman
easter 2011

My Weather

Carter 5yrs /Coleman 3yrs

Carter 5yrs /Coleman 3yrs
2009

Friday, July 27, 2012

A new dream...

Going on the journey of being diagnosed and watching our child have to be different is hard there is a part of us that have to let go of the dreams we had and fing a new blessing, a new dream... WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Posted by at 7:28 PM

5 comments:

  1. Colleen B.July 27, 2012 at 9:53 PM

    I too would have loved to see Venice. But the canals in Amsterdam are never boring. Miss you. xx

    ReplyDelete
  2. SummerJuly 29, 2012 at 11:17 AM

    God Bless Holland. Grieving is a part of life. Everyone grieves in their own way. But it is true, Holland has SO much to offer. And God Bless YOU as the one going to Holland. HE gave you the power, the love, the knowledge, the experience. God chose YOU. Bless you dear friend.

    ReplyDelete
  3. KristenAugust 3, 2012 at 7:21 PM

    Thanks friends. I'm adjusting Ann's enjoying Holland

    ReplyDelete
  4. AnonymousJanuary 31, 2013 at 11:44 AM

    Hi Kirsten!
    This is my first comment but I have read your blog a couple of times already. My daughter is currently being tested for hypochondroplasia, one month to go until we get the results back. I love this piece above here because I actually live in Holland :), and I can tell you it's a wonderfull place ;). Will be following your blog, thank you so far for sharing your story!
    Michelle

    ReplyDelete
  5. JulieJuly 21, 2014 at 5:58 PM

    This is beautifully written. I live in Holland as well. More ways than one. Just like you! God bless you and your family!

    ReplyDelete

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Coleman

Coleman
spring 2011

Coleman

Coleman
2008