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!

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.

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.

My info

My email is randomkcvp@yahoo.com My FB is Kristen Carter vining Pratt

Empathize exercise

I have not been in any group or anything for kids with special needs kids. But lately I've noticed that when im with a parent with a kid that has autism or dwarfism I don't feel as lonely. I like talking to someone that's not looking at me with pity or awe but just two people having a regular conversation. I have been so proud of both my boys. School is not easy, sports are not easy, big crowds are not easy. They adjust and move on. I feel mean sometimes because I push them to be so independent and expect them to overcome hurt and unfairness in life. God has been motivating me to look for hurting parents with special needs kids and just Empathize. Just let them know they are not alone. Life can be hard and people that don't mean to hurt us do. A look. A pat on the head. A hint that your not quite like everyone else. And when it's our kids... Coleman's award assembly was last week. It felt like Everyone got an award but him. He looked at me and said "I'm not good at school. Why did you come?" Hurt!! I told him I didn't care about all As or awards but I cared about effort and attitude and I was there because I was proud to be his mom. My challenge to you, to me, to my kids is to look into people's eyes. Look into their lives and be sympathetic, listing, hugging,empathizing,and loving. You never know what your love could mean to that person.

when he was born

2 days old

six years, one tooth and a vacay

Well, Coleman turned six a few days ago. He asked for a pinata and his grandparents pool. He has such a tough personality. I know I have said before but God made him tough to handle the ups and downs he'll go through. Sometimes I dread a birthday because he will look a whole year smaller. I know thats silly but it comes up in my head. w God has his purpose but I wish we could give our kids a break sometimes...

July 15,2013

Wt. 44. 3 pounds difference Ht 3ft 4.5in. 2 in difference 97.5cm. arm. 95 41cm. Leg. 38.1 07/15/13 Wt. 51. 7 pounds diff Ht. 3 ft 6.5 in. 2 in diff Arm. 102.5. 40.4 in Leg. 42.7

Seven years old

Coleman had a birthday last week. I can't believe he is seven years old already. His dad just took him to the endocrinologist today and we got some good news. He grew two more in and gained 7 lbs since his last visit. We also get to move the growth hormones up to 1.0 now. Dr. Flint also said she believes if things keep progressing that when he reaches his max height he should be around 5'3. I believe what we were told from diagnosis was Coleman would be around 4'4. Things are looking great. Thank you for your love and support.

Worry wart

We just had a baby girl in March. Between that and two active boys in soccer, AWANA, church,swimming and school I had neglected my blogs. Sorry!
So many things have gone through my thoughts lately. I worry Scarlett will be taller than Coleman. Not a loose my hair kind of worry but just a thought. How did you explain to your child that even though there older they are smaller? The other obvious one is if she will be " different". I tried to push it back but it keeps popping up. Carter ( my oldest) has autism and Coleman has hypochondroplasia. She seems to be doing well though. Coleman can't keep his hands off of her. He kisses her and talks to her. I have to admit I was worried my baby would be jealous but he's been great.

he is in a book

We went to Shriners today to see the genetisit Dr. Harold Chen. First of all it was his birthday. His 79th birthday to be precise. He is a genious and so kind. It was just a check up we have every two years. He has written three volumes called "The atlas of Genetic Diagnosis and Counsling" And guess who made it into the book?? Coleman!! I have a couple pictures from our visit too.I will have to down load them later

A new dream...

Going on the journey of being diagnosed and watching our child have to be different is hard there is a part of us that have to let go of the dreams we had and fing a new blessing, a new dream... WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

No training wheels!!!!

Coleman has always been more physically coordinated than expected. I have been so proud of the way he pushes through challenges and comes through the challenges stronger. On spring break (he is in kindergarten)we decided to take his training wheels off his itty bitty bike. He was nervous at first but did great. He is five years old now.

I just don't know

I wish I could answer every ones questions. I have a facebook account and it is on my blog if you want to go into more detail. Just message me first so I know you are not some weirdo. ha ha.
One thing I do want to say about the growth hormones is I don't know of another Hypo that has been on them. If someone out there that has specifically hypochondroplasia and has taken Growth hormone shots or has been on them please let me know. So because of that I don't know what results will or could be. The doctors can guess but that is all it would be is a guess. Coleman is very tough. The shots don't really give him a lot of pain or trouble. If my oldest had been short and had to have these Id be in trouble because he does not have the pain tolerance Coleman has. I know that we as parents have to do more than take the word of the doctor. In America we have genetisist that we can go to to determine if they are growth hormone defficiant or have a form of dwarfism and so on. If you think more is going on. Go with your gut and find out.

3ft. 3in

Coleman is 5 1/2 years old
Height is 99.5cm (3ft,3in)
Wingspan is 37.5 in
Leg Length's are 15 in and 15.5 in
growth total this year 2.5 in
Total growth is 7.5 in in two years since growth hormone shots

We went to Children's Specialty Hospital on Thursday to get his measurements and his blood work. We don't have the blood work in yet but he is doing great. our doctor said that she has had other Hypochondroplasia kids try to get the GH shots but all were denied. I know we are lucky to gt this opportunity and wish there was something we could do for others. Ill keep you posted.

Shot or no shot?

So, I got a call from genetec, the growth hormone company that supplies Coleman's growth hormone and got a shock of a life time. They said they could no longer supply us with it because after reviewing his chart they discovered he had a diagnosis. The drug test they were doing was for individuals with growth hormone deficiencies only. I was in complete shock, why now after two years are you pulling the plug on something that's changed our lives. I tried to tell them it was working, we were seeing results, he is more proportional and his legs are growing. We have had no negative side effects at all. But they had their mind set and told me I could try to go through my insurance company (we all know how that goes). I even told them about you all. About my HypochondroplasiaKid blog followers. How if this works for CoCo it could work for your child.
To make a long story short after crying and being disappointed, the growth hormone ran out and I told Coleman we were having to stop the superman shots. He was confused and asked every night about it. I finally told God, if this was it, if we couldn't get them again then thank you for the opportunity. I told people and family to pray about it and I came to the decision this was Gods will, His decision. I was and have always been content with Coleman's size, diagnosis and all that entails. It was just disappointing to have something that makes life easier for my baby boy to be taken away.
Well our insurance company called us back two weeks later. They are sending us the growth hormone, they approved us. The genetec company called them and asked them to continue supplying us with it. We got our first shipment in today. Maybe we can change things for these kids. Give them a boost in life. Keep praying that we continue to see results in Coleman and that that leads to more opportunity for our kids to get them as protocol. I love you guys.

Family Support

I have a great family. They have been so supportive and helpful with everything. My husband and his mom have been my rock with the Growth Hormone Shots. My parents have prayed and listened to my rantings. My sister in law Andrea takes the kids for sleepovers or babysit when we have a long doctor visit with Coleman.

This is a picture of my family on Christmas morning.

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.

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.