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

Tuesday, August 23, 2011

We had an interesting thing happen on Sunday afternoon. We went out to eat with my husbands family after church and there was a long line so the kids were bored. My father in law starts playing with Coleman and picked him up by his arms and my brave Coleman screamed bloody murder. He never acts like he's in pain, even when he split his head open. I took him too the doctor the next morning and he said his elbow was out of sockett!! WoW! he popped it back in and Colemand has been a tad bit sore but none the worse for wear. He said this might be part of Hypochondroplasia or maybe part of what I have called ehlers danlos. Anyway he's fine but I was wondering if anyone else has had joints pop out of sockett?

Thursday, August 18, 2011

if only everyone was like him!

We found out today that Coleman grew one inch this 6 months and the good news is it was all in his legs. His legs went from 13" to 14". His wingspan was 36 1/8". The doctor said he was progressing and that he couldn't grow 2" every time we saw her. We get to increase his Growth Hormone dose to .08 so that is a positive.

Coleman did so good when we got his blood drawn, he suck his arm up there they tied the rubber band on, stuck the needle in and he didn't even flinch. The nurse taking his blood said "if they were all like him I would go home with my hearing and a good attitude."

I want to thank everyone who has followed our progress. Not everyone gets a chance to do the GH shots and we are very blessed to be getting this opportunity. I would hope the documentation we give will be our contribution and our gift to all future Hypochondroplasia kids. Maybe one day this will be protocol and not so hard to get. If there is ever anything we can do lets s know.

Kindergarten has arrived

Carter (6)started first grade. Coleman (5)started Kindergarten.

Coleman started Kindergarten this year. This is his first day of school.

Tuesday, August 9, 2011

AUG 18

we will be heading to the Endocrinologists August 18th and Ill let you all know about Colemans growth and where his compared to before the GH. They are still working and Ill have the details when we get back.

Sunday, August 7, 2011

I ever be like everybody else?

Me and Coleman are sitting on the porch a few minutes ago and I asked if he was ready for Kindergarten. He got quiet and said, "when Carter went to kindergarten he was big and all my friends are big, I don't want to go. I said he was five and all the other kids would be five so he was going. he said " I ever gonna be big like everybody else?" I thought through my answer and said ,you might not be tall like everyone else and that's OK. I told him that's why we go see the doctor in Lafayette and give him a shot every night to see if it will help him grow. He added "and when I try hot dogs they make me grow?"
you know? Its been one of those days when Carter(my 6 yr old with autism) seems worse and getting ready for school. It is more than preparing to go to school it is emotionally getting them ready to. Preparing them to be ready for the questions and comments from peers and adults is almost as daunting as the school work itself. (breath) I also have gotten a new job. I am thrilled but also a little nervous too because I have been able to focus all of my energy on them and now will be tired and busy. Please pray that things go smooth and that Coleman can persevere.



James 1:1-6
2Consider it pure joy, my brothers, whenever you face trials of many kinds, 3because you know that the testing of your faith develops perseverance. 4Perseverance must finish its work so that you may be mature and complete, not lacking anything. 5If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. 6But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.

Friday, August 5, 2011

a watched pot never boils?

We are going to Lafayette, LA on August 18th to Colman's endocrinologists. She measures him and makes sure the growth hormones are not affecting his organs and blood. Measures his head and legs and his sitting height and standing height. I'll let y'all know what happens. I try to only have him measured when we visit the endo. For one, a watched pot never boils and second, I don't want him to be measured all the time. Am I the only one or are y'all curious to have it done more often. The growth Hormones seem to be working and he is doing great. We have not had as many falls this year, the top heavy topples are fewer and fewer. Let me know how many times you measure your child a year or if you think he's growing do you do it right then? Am I crazy to wait and do it twice a year?

Coleman

Coleman
spring 2011

Coleman

Coleman
2008