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

Monday, December 26, 2011

God is still God even if things dont go your way

God is still God even if things don't go your way.
I have been reading the Redemption series by Karen Kingsburry and it is about a family that goes through all kinds of obstacles from death to handicapped children to sins effects.
Anyway, to make a long story short, in the book a woman is debating God doing miracles. Why do some get their miracle and some dream of miracles. Who gets one and what determines a miracle candidate?
Anyway as I was reading one of the characters says "God is still God even if things don't go your way."
Yes, yes he is but as a Christian maybe I feel I and some others I love, need a miracle, a change. Why do we as Christ followers feel we deserve miracles?
Well I have come to the conclusion that we see people in the bible or maybe others in our time that God did amazing things and we feel that because we love the same God and have faith in Him he will move mountains. And he will and does but it might not be when or what we want in our time. If we could pray something into being would we need a God? Just putting things out there? let me know what y'all have discovered in your pain, in your relationship with God.

Saturday, November 12, 2011

love may abound more and more

"And it is my prayer that your love may abound more and more, with knowledge and all discernment, so that you may approve what is excellent, and so be pure and blameless for the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ, to the glory and praise of God."
Philippians 1:9-11
http://www.cfcare.org/
I have really felt God asking me to looking into adopting a child that has dwarfism lately. I have always wanted to adopt since 1999 when I took a mission trip top The Dominican Republic and saw children w/o parents. But knowing my children could be one of them it appalling. Just asking for wisdom. Financially it is out of the question but God is bigger than money.

Monday, October 31, 2011

double take


Has anyone ever had to do a double take. Like when you go to school for a party or something and see your kids with his peers and you think wow, they are different. I forget or get used to it. I had that moment today. Coleman has had a whirlwind of a kindergarten year. We have found out he needed ADD meds, he is severely colorblind, is left handed and now that he has some hearing loss. WHAT? I had read that hypo's sometimes had learning disability's, and my dad is colorblind (deuteranopia)which means he sees variations of the same color, but now hearing loss too? Does anyone else have any info on the hearing thing?

Saturday, October 1, 2011

Be aware


We have had a good year. Coleman has been on Growth hormones for two years now and it is going well. He is in Kindergarten. Life has its ups and downs, like finding out Coleman is color blind, or behind in school and then the ups, he is progressing in swimming lessons very well and is not falling as much lately. Since October is dwarfism awareness month. Make people aware of the likeness and the differences our kids must face. Everyone has something they struggle with, something they have to overcome or face. Everyone understands being different. Hope your October is full of beautiful weather and memories. Share with us any time.




http://www.dwarfoutfitters.com/

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?

Monday, July 11, 2011

newborn CoCo

Happy 5th Birthday

He is five today.5 When I think back I remember beautiful brown eyes, white wispy hair, snoring, colic, sleepless nights and allergies.
We were worried that he had (OI) but it turned out to be hypochondroplasia. We thoght he might not walk or have braces on his legs but everything has been fine. When we got the oppertunity to try growth hormones we were not sure it would work and they have. God has blessed us with a beautiful, brave son. Coleman is stubborn and sweet. He is testing and forgiving. He is thoughtful and mean. God has given him the personality to survive this life. He is just what God wants him to be. He is everything rolled into one little person. I am proud to be CoCo's mommy. Five years of trying to figure him out. Thank you God for your blessings. Happy Birthday Bug.

Wednesday, June 15, 2011

The Little Couple

I have come to love the show Little Couple. I am so proud that they are a married, successful, happy, adjusted couple. So me and Coleman watched it together for the first time last night and I tried to see if he understood that they were little people. I said to him "Some people are littler than others...do you have any questions about this show?" He said "well, I'm big like Carter, I'm not little." Well maybe I'll bring this subject up next year but I am glad though that he didn't notice they were different. I'm so proud of my kids. They have confidence and pride in themselves and yet compassion and equality for others I wish for everyone.
So this conversation will happen but he is not ready yet.

Monday, May 30, 2011

"How old is he?"


I went to the neighborhood pool this afternoon and as were walking in I hear teenage girls giggling and one says "he is so cute, he'll be a hottie when he' older." I didn't even have to turn to know who they were talking about. He is the cutest thing I must admit. They continued to smile at him and talk about how he was walking, and he talked so good for his age. Did they know his age? NO, but it was sweet and innocent. He can swim on his own, and does very well for his size and muscle tone and I saw at one point all the adults staring at us watching this "baby" swimming and I knew it was coming. "The how old is he question". I hate that we will always have that question. Weather it is soccer, a field trip, doggy paddling or at the grocery store it never lets up. I wish I could put him in a bubble and never let him hear the "how old is he conversation" ever again. But I feel a sense of obligation not only to help you, my hypochondroplasia blog family but also the people who are not aware, who are curious, even those who are rude. God has more for us than surviving He expects thriving, He expects compassion He expects love.

Tuesday, May 10, 2011

DIY

Do It Yourself!
It would be easy for me to do things for Coleman like pick him up instead of making him walk, or open every door for him. He needs to learn how to do things that are hard from him. Here is a picture of him opening the suburban door.

Thursday, April 28, 2011

Easter Breakdown


You know some days I wake up and believe life starts fresh and God has big plans. Some days, usually holidays I don't.
Things have been busy with swimming lessons, soccer, work, church, Connor being home, Carter being "off" Coleman's injuries, meds, GH shots, ear drops, laundry, dishes, husband issues, AWANA, family, caming in a pop-up, weight watchers, etc...can I get an Amen?
I have put too much on my plate and I am starting to feel it. My house and car are messy, Im getting migrains. My feet hurt. My friends wonder where Iv'e been. Im not exercising. Im not spending the time with God I need too. And then the night before Easter I had to get eggs hid, baskets layed out, cute clothes layed out, and I had a break down.IS this what I have made Jesus resurrection?? Is this what I want my kids too see is important?? The next morning in my Easter dress, I had a headache hangover and swollen eyes. All of this to say I can not keep up with the Jones'. God has given me a little wake up call. He comes first and family second. I can say no or take a nap.

Wednesday, April 13, 2011

soccer

We have always done swimming lessons and have not ventured out to other sports but I thought the boys would love soccer. So I got all the socks, soccer balls and cleats and we went to the first practice. He had a hard time keeping up with the running. He fell forward 100 times but he always got up and kept going. What more can I ask for? He loves it now, and is keeping up a little better now. He is actually not the smallest one on his team. He is by far the cutest soccer player I've ever seen.

light bulb moment

Coleman went to the bathroom and he usually yells for me to turn the light on so I got up and to my surprise the light was already on and he had a big grin on his face. He can turn on the light. It was an exciting moment and Coleman knew it was a big deal too. I still have to turn it off but I thought ya'll would think it was as big a deal as me.

Wednesday, March 23, 2011

crooked


Coleman's back was crooked when he first started pulling himself.

a look back



Coleman had such bad colic, he screamed all the time. poor sugar bear


Coleman only a couple of weeks old. Carter loved him right from the begening

Saturday, March 12, 2011

Pirate Coleman

Coleman is always singing songs from school. This song is by Jack Hartmann.
video

Friday, February 25, 2011

Crazy Beautiful


We went to the Endocrinologist in Lafayette last week and when we were there I was not exactly emotionally "in the moment". Coleman was wallering around the doctors office, 4 hr drive there and 4 hrs back does not exactly put me in the best frame of mind. So long Thursday, then Friday I have d-now weekend, which is about 10, 8Th grade boys staying at my house all weekend, which was actually wonderful but exhausting and to add stress my parents were supposed to be there all weekend. I wanted to be with them and with the church group and couldn't do both so it was crazy. We were rolled when we woke up on Sunday, which is hilarious I'm sure. Then I had scheduled a woman's party on that following Monday. To put a crown on this beautiful weekend I decided to steam clean my carpets in the playroom and dinning room. Well it backfired on me and made the carpets reak all weekend like dog pee or mold. Ugh!!!


To say all of this is to complain, I know. BUT I want everyone to know God was faithful when I was not. He came into our home even though I had a bad attitude. God provided My parents to help when I had not thought to ask. God gave my baby Coco almost 2 more inches when I dared not hope for one. I realize that I can not do life on my own...
Everything had to fall into place for Coleman to receive the growth hormone in the first place. The geneticist had to recommend the right doctors and have connections. The 3rd doctor we visited was more helpful than he was required to be and when he left Dr. Flint stepped right in to be our guide in all of this. It is a long exhausting process of paper work and denial letter and approval letters until one day some ones says yes. It all falls into place and I think to myself, we did a good job for Coleman but in all reality God is in control. I forget to thank the creator the King of Kings, my Love and my Redeemer.We went to the Endocrinologist in Lafayette last week and when we were there I was not exactly emotionally "in the moment". Coleman was wallering around the doctors office, 4 hr drive there and 4 hrs back does not exactly put me in the best frame of mind. So long Thursday, then Friday I have d-now weekend, which is about 10, 8Th grade boys staying at my house all weekend, which was actually wonderful but exhausting and to add stress my parents were supposed to be there all weekend. I wanted to be with them and with the church group and couldn't do both so it was crazy. We were rolled when we woke up on Sunday, which is hilarious I'm sure. Then I had scheduled a woman's party on that following Monday. To put a crown on this beautiful weekend I decided to steam clean my carpets in the playroom and dinning room. Well it backfired on me and made the carpets reak all weekend like dog pee or mold. Ugh!!!

Wednesday, February 23, 2011

sWiMmInG



Swimming has been the best thing I've done for Coleman's phisical therapy. The Swim School has been so helpful with adapting to his needs. Going from hating the water to loving it and looking forward to mondays leassons. His strength in his neck was next to none and now he can breath on his own. They are teaching him to flip onto his back from the front, he puts one arm up close to his ear and doing the backstroke. Super cute. His teacher is awesome and so are the other swim coaches. I heart the swim school.

Saturday, February 19, 2011

on the growth chart



Well our long drive down south paid off. We saw Dr. Flint the endocrinologists at The children's speciality hospital. We did see growth:
Lower segment (legs)one leg was 13 in.. the other leg was 13 1/4 in . The over all growth in the legs was 3/4s in 6 months.
Wingspan (arm length) was 34 1/2 in... total growth was 1 in in 6 months.
Height was 37 inches and he grew 1.5 inches in 6 months.
Total height for the growth hormones started (year) has been 3 3/4s inches total.
The best news of all was that he made it onto the growth chart. He had to get his blood taken and didn't even flinch. He was wonderful. Thanks for all the prayers and thoughts for our journeys with Coleman. Your support is invaluable.

Wednesday, February 9, 2011

Coming Soon


We go to Lafayette, LA on February 17th to see Coleman progress. She (Dr. Flint)measures his head, his legs and his height. I don't like to measure him all the time because "a watched pot never boils". We visit the endocrinologist about every 6 months or so. Ill let you know how the bloodwork comes out. The bloodwork shows how his internal organs are doing and if the growth hormone if effecting his body. We have never had anything to show its doing harm. Just a heads up that next thursday we'll know a little more about Colemans progress.

all the Kings horses

The other day we were in the church santuary talking before band practice watching the kids run around and play. I was telling some of my close friends that Coleman was growing and doing well. I bragged that we had not had a head injury in a few months and I thought his balance was improving. We talked about the growth hormones and our kids before starting the first song. Before we had even finished the first run through I see the drummer look at me and mouth "Coleman". I looked over at the kids to see CoCo's mouth bloody and panick in his eyes. he had been running and lost his balance, fell forward and hit the bottom of the pew. We went to the Emergency Room and sat for three hours (watching Toy Story II) and at the end they just told us to go home and let it heal. he is oing a lot better now, but I hate that fe falls all the time, it worries me to death. But yet again he was wonderful, not a lot of tears and crying and he ate
and drank the next day. Such a trooper

Tuesday, January 11, 2011

new happenings

I have been taken a product that changed the way I view medicine and synthetics it is called Max gxl. I was talking to one of the ladies who is doing research for this pill and autism for my other son but when I told her about Coleman's Growth Hormones she said to immediately put him on this too. I is something that flushes the toxins out of our bodies and she said that it would allow the GH to work even better if he were to take this. I have been taking Max gxl for 4 months and my thyroid problems has completely gone away. My blood work came back and said no problems with my thyroid exist. Cool huh? I'm skeptical but it has worked for me and no Ill try it on my sons. Ill let you know how they do.
http://autismwithrhonda.com/glutathione/
http://autismwithrhonda.com/book-store/the-journey-home-from-autism/

Friday, January 7, 2011

When he did what

held his head up--2 months
turned over --3 months
smiled--2 months
laughed--3 months
sat alone--6 months
crawled--10 months
pulled hisself up--9 months
1st word-- 11 months
held a bottle--6 1/2 months
walk supported--11 months
walks --14 months

I hope this helps someone

height/weight from birth


birth-7.15lbs --19 in
2 weeks-9lbs--19 1/2 in
2 1/2 months 10lbs--22 1/2 in
4 months-12.3 lbs--24 in
5 months-14.5 lbs--25 in
6 months-15.7 lbs--25 in
7 months-17 lbs--25 in
8 months-18 lbs--25.5 in
2 years- 21 lbs--29 1/2 in
3 years- 25 lbs--30 in
3 1/2 years- 30 lbs--33 in
4 1/2 years- 33lbs-- 35 in

measure of a man


Today Carter, my six year old was playing with the measuring tape and asked if we could see how tall he was. We did and he was about 4'3. then we measured Coleman who is four years old and he was 36 in which I believe is 3' feet tall. Is that right? It was was spare of the moment so it was probably inaccurate.

Coleman

Coleman
spring 2011

Coleman

Coleman
2008