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

Saturday, July 19, 2014

Lost GH Found perspective

Well, I knew this time might come but it is still a little disappointing. We got a call from Coleman's endocrinologist a few weeks ago that the insurance company had denied three appeal letters for Coleman's Growth Hormones. He will not receive them anymore. We are thrilled that he got them when he did and for as long as he did. Thank you so much for all the questions and prayers. Cocos dr said there was/is a hypochondroplasia GH study in France and that 1/3 showed some progress. It was not definitive enough evidence to say it was a safe bet for insurances to give to them though. She said that this group that did the testing believes that some genes are more receptive that others and that's why 1/3 showed improvement. If you have any questions feel free to ask. I may not know the answer but I'll try.
I have to admit I am disappointed but not discouraged. I believe God has a specific life in mind for Coleman and myself. I also believe that this is Gods will because I'm totally at peace with this decision. If coco had not gotten the GH shots I might not have gotten to meet some of you and I might not have gotten to share Christ with you. Thanks again!

Friday, March 28, 2014

Excuse me? Uh huh

It is spring break this week in Louisiana so we did a few fun things. Scarlett's first birthday, visiting grandparents and great pop in Arkansas and went camping in north Louisiana. It's a place called Bodcau and it's quiet with a playground and bike roads so the kids can have a blast. Well it was mid afternoon and I noticed all the kids playing around the campfire but Coleman so I asked his best friend/cousin Georgia where he was. That's when she told me two teenagers had told him he was too short and laughed. Being a Christ follower I took a deep breath and asked God to calm my aching heart. Of course Coleman would rather die than tell me what was said. He's so independent and strong but I'm NOT! I marched up into the woods and asked politely as I could "did you say something to my son?" Which one replies "we never said anything about height!" Uh huh yep I hadn't yet either sugar!! So I say " well he has a form of dwarfism and is sensitive when two teenagers put him down, next time you speak you should think first" as I turned around their mom is starting to get out of the tent. I told her I was sorry to confront them but they had an opportunity to make an impression on my child but the chose to hurt him. The mom was polite and said she'd take care of them. I never do things like that but the quite sadness oozing off Coleman was too much. Don't mess with any of my babies!
Coleman and is cousin. Same age

What? What did you say?

Coleman has been asking "what?" After everything we say  lately. I thought at first he wasn't listening or he was trying to get under my skin but I don't think that's the case. I called his speech therapist and she noticed the trouble too. I also noticed he's been reading lips. He fails the school hearing test every year but when we go to the official hearing test he passes. So anyway to to make a long story short, we are go to  the evaluation center to get some more tests done. He is seven years old now, so would the hypochondroplasia hearing loss show up now? Does anyone else have experience with this? Let me know if you have! I love having my hypos support from other moms and dads.

Saturday, January 4, 2014

Who R U

Coleman  is heading back to see Dr. Flint in Lafayette, LA on Monday, January 6,2013. He is doing good. I will let everyone know what she says about the neutropin growth hormones and what she thinks his progress is .
He is doing well, in school, in health and emotionally. He asked this year about why he was shorter, why he had to take shots, why it had to be him. I told him like I tell my kids all the time. Everyone has something they have to overcome or something that makes their life harder. My oldest son Carter is autistic and I have ADD, Coleman has hypochondroplasia. I wish I could take their pain away sometimes but if I did I would rob them of who they will be. I have freak out moments where I cry and ask God my savior, my friend, my Lord why, why us? I know in my heart he has and will be an encouragement to other kids. What we see as weakness God uses for his glory. Coco is a tough little thing and I wouldn't change him for the world.


spring 2011