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

he is in a book

We went to Shriners today to see the genetisit Dr. Harold Chen. First of all it was his birthday. His 79th birthday to be precise. He is a genious and so kind. It was just a check up we have every two years. He has written three volumes called "The atlas of Genetic Diagnosis and Counsling" And guess who made it into the book?? Coleman!! I have a couple pictures from our visit too.I will have to down load them later

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.

Sunday, April 15, 2012

No training wheels!!!!

Coleman has always been more physically coordinated than expected. I have been so proud of the way he pushes through challenges and comes through the challenges stronger. On spring break (he is in kindergarten)we decided to take his training wheels off his itty bitty bike. He was nervous at first but did great. He is five years old now.
video

Saturday, March 3, 2012

I just don't know

I wish I could answer every ones questions. I have a facebook account and it is on my blog if you want to go into more detail. Just message me first so I know you are not some weirdo. ha ha.
One thing I do want to say about the growth hormones is I don't know of another Hypo that has been on them. If someone out there that has specifically hypochondroplasia and has taken Growth hormone shots or has been on them please let me know. So because of that I don't know what results will or could be. The doctors can guess but that is all it would be is a guess. Coleman is very tough. The shots don't really give him a lot of pain or trouble. If my oldest had been short and had to have these Id be in trouble because he does not have the pain tolerance Coleman has. I know that we as parents have to do more than take the word of the doctor. In America we have genetisist that we can go to to determine if they are growth hormone defficiant or have a form of dwarfism and so on. If you think more is going on. Go with your gut and find out.

Saturday, February 25, 2012

3ft. 3in

Coleman is 5 1/2 years old
Height is 99.5cm (3ft,3in)
Wingspan is 37.5 in
Leg Length's are 15 in and 15.5 in
growth total this year 2.5 in
Total growth is 7.5 in in two years since growth hormone shots

We went to Children's Specialty Hospital on Thursday to get his measurements and his blood work. We don't have the blood work in yet but he is doing great. our doctor said that she has had other Hypochondroplasia kids try to get the GH shots but all were denied. I know we are lucky to gt this opportunity and wish there was something we could do for others. Ill keep you posted.

Sunday, February 19, 2012

Shot or no shot?

So, I got a call from genetec, the growth hormone company that supplies Coleman's growth hormone and got a shock of a life time. They said they could no longer supply us with it because after reviewing his chart they discovered he had a diagnosis. The drug test they were doing was for individuals with growth hormone deficiencies only. I was in complete shock, why now after two years are you pulling the plug on something that's changed our lives. I tried to tell them it was working, we were seeing results, he is more proportional and his legs are growing. We have had no negative side effects at all. But they had their mind set and told me I could try to go through my insurance company (we all know how that goes). I even told them about you all. About my HypochondroplasiaKid blog followers. How if this works for CoCo it could work for your child.
To make a long story short after crying and being disappointed, the growth hormone ran out and I told Coleman we were having to stop the superman shots. He was confused and asked every night about it. I finally told God, if this was it, if we couldn't get them again then thank you for the opportunity. I told people and family to pray about it and I came to the decision this was Gods will, His decision. I was and have always been content with Coleman's size, diagnosis and all that entails. It was just disappointing to have something that makes life easier for my baby boy to be taken away.
Well our insurance company called us back two weeks later. They are sending us the growth hormone, they approved us. The genetec company called them and asked them to continue supplying us with it. We got our first shipment in today. Maybe we can change things for these kids. Give them a boost in life. Keep praying that we continue to see results in Coleman and that that leads to more opportunity for our kids to get them as protocol. I love you guys.

Saturday, January 14, 2012

Family Support

I have a great family. They have been so supportive and helpful with everything. My husband and his mom have been my rock with the Growth Hormone Shots. My parents have prayed and listened to my rantings. My sister in law Andrea takes the kids for sleepovers or babysit when we have a long doctor visit with Coleman.

This is a picture of my family on Christmas morning.

Coleman

Coleman
spring 2011

Coleman

Coleman
2008