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

Saturday, January 30, 2010

Lonely Confusion


I am a social butterfly most of the time. I never meet a stranger, I have great friends and family but sometimes I feel very alone. I guess I have always had this side to me that is irrationally sad at low moments in my life but I'm noticing more lately. My friend I work with said she thought we were all great moms and she was a bad one, she said she thought she was the only one depressed. Ha Ha. We all have those moments don't we? I worry about Colman's future and his daily injections I'm to give him. I think I'm not doing a good job raising my boys but they are sweet, polite adorable kids...most of the time. My point is I miss my best friend Lucy, the one I told every single detail of my life too, good or bad. I miss her and the safety she made me feel.

Coleman and Carter are different but aren't we all? Do we not all have ticks and odd things about us? I need to let God be my all in all and not rely on knowledge or Lucy. I don't always give God everything. I am not perfect. I am different and the same as everyone. I am a good mom...I think?

Thursday, January 28, 2010

Little pieces of heaven


I believe that life is tough but we choose how to live our lives. Happiness is a choce we make. God gives us people in our lives to help us get through the tough days. Dr. Chen has been one of the blessings in this whole process. He diagnosed Coleman with hypochondroplasia when evryone else made me feel like I was crazy.He not only diagnosed/ followed up and gave me more information every visit. He referd CoCo to specialist and new medications. Thank you God for Dr. Chen. Colemans teachers, Robin this APE theripist, Elaine Duke, The swim school, my mom, Granny, and more people than I have room on this page support me everyday to make things easier on us. Thank you for your love.

Sunday, January 24, 2010

Snorzzzz!


OK so I thought Coleman was just snoring a little until he had a fever the other night and spent the night in my bed. Snoring is not a loud enough name. He sounds like he is missing a lung or a nostril. Snaaaagggg, noiknoik, aaahhh!. He snores All night and it is giving him sleep apnea and he is waking me up. Does anyone else with hypochondroplasia have snoring issues? we have already delt with respiratory problems but nothing like this loud snoring. Someone also told me that snoring could be a side effect of the Nutrapin growth hormones. I don't know what I should do. I've tried all the normal remedies for snoring already. Just wondering if anyone had any help!!

Thursday, January 21, 2010

tape measure

Coleman got a carpenter work bench for Christmas and it came with a bunch of hammers, saws, nails, screwdriver and a tape measure. He loves it! The other day he came up to me with the tape measure and said "I"m big?" I said of course, Yes your big Co Co, and it was such a big moment. He carries it around now talking to himself, "18, 19, 20, I'm Big!" He is a sugar

Wednesday, January 20, 2010

start over !?!?

I have been trying to reach Colman's endocrinologists for a week or so and keep getting the answering matching. Frustrated I called and talked to a very nice recptionist who said his contract was up and he was leaving. GASP!! So I guess Ill have to find another one or something before his shots need to be sent next month. I hate dealing with appointments and schedules and records. This absolutely sucks but we'll figure it out. Any suggestions on a new endo. around Shreveport?

what to do?

Today I went to get a job application and the secretary talked to Coleman as I filled out papers. When she asked how old he was , I thought here we go again. I aswered he was 3 1/2 years old and she of course, said he was soooo cute and then finally said the inevitable. He is so short, not in a rude way just a curious, interested way.I told her he had a form of dwarfism and was to be short, she shockingly called her friends over to look and pat him. I was inwardly hurt for him , baffled at what to do. Then I look over and he has charmed them all into Chocolate and smiles. Life is one big suprize. Take a deep breath, kristen and get on wwith life.

Sunday, January 17, 2010

Go with Your Gut




It seems that the more I hear from other moms that have children with hypochondroplasia,, the more I hear my same story repeated over and over. I knew something was wrong or different with Coleman from early on. His back was crooked, his colic and respiratory problems were so severe. I had a gut feeling that I was right. The pediatrician told me he was just small. Small? I'm 5'10, my husband is 6'1, my dad is 6'4 . Small was not in the cards for my kids. I went to Dr. Chen who is my special gift from God and he is the one who gave us answers. I have had to find things for myself. This whole experience has made me realize what I am capable of achieving with determination and my families help. Therapy, measuring, growth hormone shots, geneticist, hypochondroplasia, questioning doctors, trusting doctors. These things are all new to me and it is scary to have a hunch, not a medical degree. I urge all of you mom and dads to go with your gut. The worst that could happen is you swing and miss. Don't wonder if you could have done more, know that you did all you could do.

Friday, January 15, 2010

Little man Big personality







Coleman was born screaming for the first 9 months of his life, He had bad colic and had no relief unless he was asleep. He was beautiful too. He had jet black hair, olive skin and the chubbiest cheeks I've ever seen. I loved him, but it has always hurt to love him. I could never sooth him when he was an infant, he wouldn't nurse or eat correctly. It has always been so frustrating to not be able to help him. Never more than now when I'm giving him his shots, not knowing what he is thinking as he says" mommy hurt me" , not knowing if I'm pushing to hard or not enough. He is so spoiled and I know I give in sometimes whether its for my benefit or his. I get tired sometimes, if its not the Growth hormone shots its a doctor visit, or a sinus infection, or not sleeping because he snores like a 70 year old obese man. I have a job i love and friends that are irreplaceable, a family that does more than I realize from my Aunt Debbye to my Pop. He has such a larger than life personality, I'm glad he is so tough. He also is a lady's man, he can charm my mom(ewalk) with his grin, my sister in law with begging and me with his kisses. He is a charmer through and through. Loving and Little, Big and Bad. I'm confused what I think of him

Friday, January 8, 2010

Pumped

I feel so pumped up by all the responses Iv'e gotten these past few days. I feel like I was all alone and now Im not anymore. Mothers going through the same gut feelingsI have and having enough gumption to fight for their kids like I do. I am so excited right now. Ironically we just got the shipment from UPS (bless there hearts) that I waited for from 8:00 this morning till it came at 6:30. I honestly was mad because I had to wait, IM PATHETIC. I was nice to the freezing UPS man who showed up at my door. So the box came in and Coleman said "dat my suberman sho" awe... so sweet. I am so blessed to have my friends and family that encourage and help me through the good and the not so good times. My mother and my mother in law have been such a support system both in their own ways. Thank you

Hes's Three!!!

I feel like a broken record sometimes. I feel the need to explain that Coleman is three, he does not need to be carried, or fed, or spanked with a feather. People at the grocerystore or relatives that are not around all of the time treat him younger. You know what makes me even more mad at this fact??? I treat him different too. I feel like life is hard enough for him, isn't it? I try to be fair ,I try to make him do for himself. Then I second guess myself, can he pull that chair on his own? can he take off his clothes by himself?does he really need to walk all the way? Then I stop and think of what best for him, not what makes his life easier for now. He is soooo independent and energized, I know in my soul to push him is to better him. So next time you feel like helping Coleman, HE IS 3!!!

Thursday, January 7, 2010

Sinking


So both of my boys have been in Swimming Leasons for 6 months. Carter loves the water, he should have been a fish. Coleman does not like the water. He prefers to lay out in the sun as the opposed to the pool. But it is January at the indoor swim school and Coleman is doing better. He kicks and moves his tiny little arms as fast as he can. I'm so proud of him, he is swimming half the pool. The only problem is he can not lift his head to catch a breath. He tries but can not seem to lift it above the water. I find myself straining my neck to breath for him. I can not help but smile at his wide eyes when his teacher helps him up. He improves every week, and it is so good for his muscles and confidence. I love The Swim School and all they do. Maybe one week instead of sinking he swim...

Wednesday, January 6, 2010

I'm done!!

We went for a check up at the pediatritions office the other day and the doctor asked, "Coleman how are your shots?" to which my sweet son answered " I don't want to grow, I'm done"

Growth Hormone shots, AKA superman shots


We started CoCo's growth hormones three weeks ago. We call them his Superman shots. He is doing very well. I feel so much pressure on me, to have things recorded properly or give the shot right. I ask God for patience and confidence for myself that Im doing the right things for my kids. Coleman is so tough, so independent. I cried the other night after giving him a shot. He had not fussed or complained, but after he fell asleep, hot tears ran down my face as I wispered, "Im so proud of you Coleman Thomas". I hope I can say at the end of the day, I did all I could do for him. I still get nervous at the thought of being incharge of my beautiful boys lives , Coleman espically. I have a peace that God chose me to be their moms and that He trust in me and I in Him. I discovered once that, faith isn't faith if we know where we are going to land. So, I blindly trust Gods plan for us.

Coleman

Coleman
spring 2011

Coleman

Coleman
2008