Christmas 2010

Is an explination the best

I was asked a question by someone today. Do I think telling everyone Coleman has hypochondroplasia is the best for his well being? I guess it caught me off guard because Im an open book. People seem to be more conciderate when they know why he is so small, or why he seems to look yopunger than his friends. Im not good at secrets or even omissions so I explaine to others. Is knowledge power? Is more information better. I don't know.

put him in my pocket

Coleman wants a drum and a gun for Christmas. We go on Tuesday to sit on Santa's lap. One of the student teachers in Coleman's school always calls Coleman "Pocket" and so I asked her what she meant and she said some day she was gonna put him in her pocket. It is so fun having him be little and cute now. I wish I could bottle up these moments and put them in my pocket

Pediatrition Road Block

I have been reading a bunch of emails lately about how parents show concern time and again and the Pediatritions are not worried. I know I felt like maybe I was crazy. Coleman was not as big as Carter was at the same ages and I tried not to compare but Im glad I did. Carter is big for his age and Coleman is small for his age. I wish mothers intuition was conciderd more. That gut feeling you get when they are different than their peers. I wish we we not concidered worriers or overconcerned and were taken seriously. I have an excellent pediatrition who just wasn't concerned enough for me. He is right Coleman is fine, hes just short but I wanted answers and solutions not to wait and wait. Waiting does help if there is nothing wrong but what is early intervention is crutial?? What if the months you waited could have made a difference?? We dont have a degree in medicine but we know our kids. Please,Listen.

Speech

Coleman has had so many changes(for the good) in the past three months. It started when he got his tonsils out in August, and then going to school and being in a structures environment. He has always been behind in his speech, which seems about normal for kids with hypochondroplasia. I was wondering if others with Hypochondroplasia have experienced speech problems or delays also? Coleman qualified to get into PreK at our local elementary school and his therapist are there in the school. He qualified for Speech Therapy and APE (Adapted Phy. Edu.) and is in a regular ed. class. He is vocalizing his needs and wants to friends and teachers. He is speaking so well now, I rarely have to ask "what did you say" He is also showing interest in books and school, where he was not. I think it is a combination of tonsils out and school making more confidence.

Love

I love my life.
James 1:2-4 says;
"Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing."
I believe God has a purpose for our family, weather or not the growth hormones work, weather or not the kids struggle. He has a plan...He is sufficient. Life is hard enough, why go through it with out Christ?

Holidays and Meds

My wonderful family lives in Hot Springs,AR and we live in Louisiana. Its about 3hrs to there house and so traveling is not bad...but traveling with the growth hormone presents obstacles, like keeping it cold or even just remembering it. I know this sounds petty, but when the circumstances change I forget to give it to him sometimes. I do not want to ever forget it but in all the commotion of Christmas and family and sleep deprivation I do. Grrrrrrrr.

Im unique, just like everybody else

I was thinking about making a T-shirt for us and our kids. I see T's for everything to make people more aware of this or that, why not Hypochondroplasia? I would like it to say,"I'm unique, just like everybody else" I saw this quote somewhere and loved it. Because not only does God make everyone different and unique but we all have ticks and hangups even if we are "normal". I wanted you opinion or creative input. It could tie us together no matter where we lived. I love educating people about autism or hypochondroplasia because it makes people more tolerant across the board.
Let me know???

wanting. knowing. doing

This is Colman hamming it up for the camera. He is doing great and having a blast at school. He has been talking more and clearer the past few weeks. Being at school and having his tonsils out have been tremendous stepping blocks for him. He is also having to adjust to the real world without me helping or being there. I am so proud of my kids. Watching them grow up, wanting them to slow down, wishing you could baby them forever but knowing that giving them independence is what they need has been hard for me. I want to protect them forever, but I let go for them, knowing it is what is best.

PreK Pumpkin Patch

He went with his class to the pumpkin patch. You can tell the heighth difference in these pictures.We had fun and he had fun.

coco and stich

I got a call from Co Co's school about 20 minutes after it started last Tuesday. They said not to panic but that Coleman had hit his head, there was a lot of blood and I needed to come get him immediately. Since he could crawl his head has been like a target. He has always had bumps and bruises even glue on his forehead so I wasn't shocked. When I got to the school there was a lot of blood and of course my little warrior was fine. We went to our Pediatrician, who we love and he stitched us up in no time and gave us an antibiotic too because he had a sinus infection too. Well Coleman was so brave he didn't even cry, except when I told him he had to stay home the rest of the day.
Of course I have been watching him like a hawk being more careful than usual. Then today I was on the phone with a friend of mine and I stepped inside for a second to get something and I hear my love bug outside crying. It was "a hurt cry" so I ran to him to find blood all over his mouth. He had gotten on his brothers bike (witch he can't reach) and fell on the concrete head first. What do I do with him? I put his superman t-shirt on him and told him to be more careful with my baby boy. UUUGGGHHHHH.

In & Out

Coleman went to his first day at "big boy "school at T.L.Rodes Elementary. I was so proud of him and his brother in their uniforms. Our Elementary has a preschool in it and CoCo was accepted. Carter started Kindergarten and Coleman preK. The toilets are practically on the ground so he can reach, the water fountains are shorter. He looked at me the first day and said "it's My size." I am so excited for my boys.Coleman was cute as a button in his uniform and backpack, the rules prohibit backpacks with wheels but when we put it on him his feet left the ground so they let him role into school.


Then that same day we had a doctors apt because Coleman's sleep apnea has gotten worse. Its like he can't catch a breath until its too late and he inhales abruptly. It is scary, and exhausting. He is not sleeping and neither am I. I was planning on getting his tonsils out during Thanksgiving break but Dr.Rice said "how about Friday." So Friday we got his tonsils out and he is breathing so much better I'm ashamed I didn't do it earlier.

a pictures worth 1000 words

I was going through some of Coleman's old photos and I was better able to tell he was growing. His legs especially. It is funny how people would say that he was growing or looked taller and I took it as being "nice". I see now that they were not with him daily and could see things I couldn't. I wish I could see the future and know that bullies would not exist for him and self esteem would never be an issue but right now I am just glad he and his brother are here and safe. God made them so special and so perfect that it brings tears to my eyes sometimes. I know now why my parents seemed overprotective, they loved me.
My pastor lost his daughter Jessica over a year ago and he talked about her in his sermon today. I wish she was still here just as her family does but God wanted her with Him. It put my kids struggles in perspective and made me appreciate them more. In II Corinthians 12:9it says "My Grace is sufficient for you, for my power is made perfect in weakness." I feel like these past few years have been challenging to say the least but God has been consistent, it is I that have struggled. James 1:2 says "Consider it pure joy whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance."

Nana Knew

My sweet Nana died of cancer almost a year ago from this week. She was one of the first people I asked to pray and consider the growth Hormone for CoCo from the beginning. She knew he would get them and had confidence that God was faithful. Let me clarify that Gods faithfulness is constant with or with out Growth Hormones or dying of cancer. God loves me and my family when things are great and all I have needed He has provided but he loves me and is faithful when things do not turn out as I plan also. As Natalie Grant sings " who told us we'd be rescued?, why should we be saved from sorrow...this is how it feels to be held, how it feels when the sacred is torn from our lives and you survive..."
And so I have survived, to miss my Nana and see my Pop change from her loss. I've let dreams of my "perfect" family go and seen new ones form. Today was bitter sweet because with the good news that Coleman is growing, I missed her all over again. Because I felt jipped that she wasn't here to hear my news,selfish I know. I am comforted that maybe she knows CoCo and I are doing great and that her prayers to God were everything to me.
I smiled today in a knowledge that she knew, Nana knew everything would work out. She was always calm when I was panicky or faithful when I was unsure but today my faith in God increases, not because of Coleman growing but because I am growing in Christ.

2 inches in 4 months

Whew hew!! We have good news, The Endocrinologists in Lafayette measured Coleman today and said he had grown two inches since March. That is excellent since an average toddler grows 2 inches in a year. He was 33 1/2 in March and 35 1/2 today(8-6-10). His legs had grown an inch of the two inches which is great since that is where his height is shortest. He had lost a 1 1/2 lbs so we need to keep an eye on that, 30lbs to 28.8lbs so its not much. We are to keep the Neutropin Growth Hormones at .06 until he gains some weight. She had asked if his feet had grown and when I told her they had gone fro a size 5 to 8 in 5 months she was excited.

Dr. Flint

We leave early tomorrow morning to go see Dr. Flint our endocrinologist for Coleman. I feel like I am going to drive 4hrs there and four back just to hear he is doing good but no change. We are still giving him .6 of the Growth Hormone. Ill let you know what she says or if there is any new information she has. Maybe he's grown some? maybe not? it feels weird to be anxious about it.

Reaching

My mom got Coleman a fold up stool. It has a handle so he can carry it around and reach things he might not be able to normally. Im actually watching him right now take the stool around and turn off the lights he's able to reach.
We went to colemans brothers school, TL Rodes. Carter bis going to be in kindergarden next year and we went to see the school Coleman noticed that they had things his size. The tolits were low to the ground, the counter had one for adults and one smaller, coco can reach. The coolest thing he saw was the water fountian that he could reach, he smiled and said "my size". Its funny the things you don't notice when your looking at things from normal sizes. Everything changes your point of view when its your child.

what to say

Coleman has been paying more attention lately. When someone asks how old he is and the we get a "oh, he is so little" or something like that and I have noticed him listening to every word spoken. He has been saying things and asking questions about height and age more than normal the past week or so. I know its coming, and I tell him everyone is different. Some are tall,like Carter his brother(extra ordinarily tall) and some are not so tall. Some are blond and some are red headed. But it seems I am talking to someone who is figuring things are different for him, and he is strong. I hope I do a good job making him confident in who he is and not what sets him apart physically but only time will tell. Any suggestions to explain things to a four year old in a life changing way? I wish I knew what to say...

Atlas of Genetic Diagnosis and Counseling

by: Dr. Harold Chen
Diagnostic Investigations

Clinical Features
short stature
stocky build
facial appearence
skeletal features
limbs
1. disproprtionately short compared w/ the length of trunk
2.mild limitation of elbow extention
3.broad short hands/feet
4.bow legs(usally mild)
5.adult onset osteoarthritus
scoliosis
slight lumbar lordosis with a sacral tilt



some common features
short proximaland or middle segments of the longbones with mild metaphyseal flare.
narrowing or unchanged lumbar
short broad femoral neck
shortening of the distal ulna
prominence of muscle insertions on the long bones

Co Co is four

We had a Peter Pan Party for Co Co's 4th Birthday Party. He had a blast and his cake looked awesome. He said a couple times, "am I tall now"? How do you respond to that? I don't know. He played and opened his gifts. I forget sometimes that he is so small until he is with his peers. His cousin is only 6 weeks older and a good bit taller. Anyway we sang Happy Birthday twice since that is his favorite part. Hope you enjoy the pictures.

Mount Rushmore

We drove 23 hours to see South Dakota. Loved the weather( no humidity)and seeing everything was life changing. Coleman did everything everyone else did except when we hiked for miles at a time he had to be carried. His legs would be to tired to go on. He hiked the whole Wind Cave on foot and a waterfall hike. It seemed like the smile would not leave his face. When he would whine all my family would pick him up, I know they mean well but I'm trying to push him. He slept in the pop-up with us and Carter slept with my in-laws in their fifth wheel. We had a great time and I think Coleman grew up a little while we were there.

same ole same ole

Well we waited in Shriner's to see Dr. Chen for what seemed like a lifetime(6 hrs) for a 30 min visit to tell us we are doing great. He is in the 25% for a two year old when he is four years old. His spine looked good, even though swayback was still prominent it is not an issue at this time. Same news, stay on growth hormones, get tonsils out and keep him physically active. We don't go back to genetisist for two years.
Head Circumfrence-52cm
Height-87cm
Weight-13.4kg

wish I knew more

A lot of you would like to know more about the growth hormone treatment and the results. I wish I knew more. The truth is that it is experimental and we have only been using the shots for 6 months and were told that we might not see results right away or maybe not at all. Coleman has no other health concerns other than swayback dealing with hypochondroplasia so he is a prime candidate to try GH. We, My husband and along with family and close friends weighed our options and the choice to give him a boost in life was right for us. If he stays little than he will, we would be just as satisfied if he does not grow, but I couldn't pass this opportunity by with good conscience. I will let you know the results as we get them. In August we go back to our endocrinologist and at the end of July we go see our geneticist and will know more then. Thank you for your questions and interest. be patient with me as I am learning too.

He looks taller

Coleman has been growing lately but then so has everyone else. He is so tiny yet his shoes sizes are almost 1 1/2 sizes bigger. His clothes fit differently. A lot of friends and family say "he looks bigger/taller" but everyone else his age is growing also. At least he is progressing some. Growth Hormones are no causing him any discomfort and his bloodwork came out perfect. I hope the next time we go to get him measured well see facts improved.Until then...

shoes!!!

The first time Coleman started walking he was in a shoe size 5. He still could wear a five a few weeks ago. But when I got his shoes for Easter he fit in a 7. Yea, we are growing a little.

lopsided

Well, we drove down to Lafayette, L.A. for a new endocrinologist doctor visit. The new doctor was nice and very thorough. She was very amused by his leg length and how the rolls and creases didn't match on either side. We measured the legs and one was 1/2 inch different than the other leg. Well that might explain why he falls all the time. He is top heavy and now we know he is lopsided also. The doctor we met Monday is going to help us continue the growth hormone fight going on with the insurance company and monitor his progress/ non progress. We did some blood work to see if the hormone is causing any damage also, we'll find out the results of it later. Over all the visit was good, but exhausting. We go back in August. Everything has been pretty easy as far as this whole scenario goes.

short, little legs

Today was picture day at school. Like most pictures we have taken I was stressed out!, and Coleman was ticked off at what he was wearing. He is still little so I put him in one of Carters one piece sailor suits he had worn at 7 months old. He was adorable but it did look a little babyish for an almost four year old, mistake on my part. When we got to school one of his class mates said "look at his cute little legs". She did not mean anything by it but he ran to his bag and got a pair of pants and immediately put them on. We couldn't leave the pants on for the picture, but for his sake I left the pants on till the last second and we got a beautiful picture. Poor thing gets that all the time.

Then the next day at swimming lessons some other girl about 3-4 years old said the cuss word in our house "BABY". He looked at me and as I rolled my eyes he smiled at me. Maybe he does understand a little that they just don't know how old he is or even understand how it hurts him and me to hear common phrases.

hello and goodbye to dreams

I was thinking after my last geneticist appointment how good everything with Coleman has gone. I remember how that first visit was and how scared I felt. I remember the word hypochondroplasia coming out of the doctors mouth and wondering if he sneezed or if I was lost? He had the worst colic known to man and a crooked back and he wouldn't drink his formula? Now all these words, like hypochondroplasia, dwarfism, bone scans, growth hormones and skeletal displasia make sense and are apart of my world. I have gone through so many emotions, from wondering if something was wrong, to knowing something was wrong. I have cried, smiled, informed, been informed, prayed, been OK, been not so OK. Now he is 3 years old and running, playing, talking, and living like a normal child. Sometimes we have to say goodbye to our dreams of what we thought life would be like and say hello to a new dream, a better dream. God has plans for Coleman and this is what it is. "For I know the plans I have for you declares the Lord ; Plans to prosper you and not to harm you, plans for a future and a hope. " God has a plan for us as parents too. To learn and grow as Christians and to help our children do the same.

the day that goes on and on my friend

OK so this day has lasted for-ev-ver. I have been a little down lately, no a lot down. After my Nana died last summer it seems everything has gone down hill. Coleman got his growth hormones which is a blessing but a huge burden. A huge responsibility. Then our endocrinologist left the area so we have to find a new one. Carter has had his ups and downs.Dr. Blanton found a tumor on the inside of my leg, have to get it removed, Coleman's tonsils have to come out because he cant breath and it looks like he swallowed a pillow. Yesterday it snowed, and it never snows in Louisiana. It was muddy but fun, so I let the boys go outside at 3:10, at 3:15 we were in the car headed to Dr.Ritch's to get stitches. He fell outside, the dog ran into him and Coco hit his head again. Luckily he only had to get glue. We came home exhausted and got in the bed early. About midnight Carter started dry heaving and throwing up bile. So needless to say I still have not slept.

oh Shot where are you??

OK ,so I got a quick call that I needed to be at a funeral in TN in a day in a half. Wow. So we had Awana Wednesday night and I needed to leave on Thursday. It stormed and rained all night. I woke up late, so I couldn't pack. We went to school, picked up Carter, I packed and put everything in the car in pouring rain. I forgot Coleman's needles / alcohol pads so I went back home to get it. Then I left the whole thing at home. Crap! now have to miss two days of CoCo shots. GRRRRR!

snot, I forgot

I went to give Coleman his growth hormone shot last night . The medication has to be kept in the refrigerator, and it was not where I usually put it. Then I looked in the box where we keep the needles and alcohol wipes and...Oh snot I forgot to put it back in the refrigerator. Luckily I only had a few days left of that vile and so David exchanged it for me. Whew, this is complicated sometimes.

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?

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.

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!!

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

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.

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.