Search This Blog

Wednesday, September 9, 2009

Scleroderma

>
My 13 year old son, Nate, has had this dark spot on his chin for what seems like forever. He and I have tried to figure it out. Everyone else keeps saying it is "nothing." Nate and I have poked at it and talked about it and tried to figure it out. We have asked other people and have gotten, "it's just a shadow." He has also been getting a little attitude with me and doing this lip snarl thing.

His pediatrician said that she has never seen anything like it in 43 years but she knew who would get to the bottom of it. She made a referal and we went to see him today.

My son has Scleroderma en coup de sabre There is no treatment and the damage that is done is done. The lip snarl is degeneration and shifting. His nose also turns to the side. We have taken X-rays and the damage is *only* muscular not skeletal. (Praise God) the shifting in his back is a scolitoic rotation and seemingly unrealted. God is good.

This is only the beginning of us figuring this all out. While we are sorry to be affected by this disease, we are sooo grateful to learn that it is localized and not systemic, or fatal.





blog signature

15 comments:

Krissy said...

I'm sorry to hear that your son is having to deal with this. I'm glad to hear it's nothing fatal though! My prayers go out to you guys!

Jaque Macpherson said...

Good luck figuring this whole thing out.
All the best tou you and your beautiful family!

just stopping by from SITS. Have a great weekend!!

Jayme said...

I hope you guys are able to figure this out ASAP!

Happy SITS Saturday Sharefest!!

Encore Bride said...

God is awesome and I'll keep him in my prayers for a complete and full recovery, the doctors may say one thing but God is in control and can completely heal him. You have a beautiful family!

Happy SITS day!

Brenda

Two Normal Moms said...

Happy SITS Saturday Sharefest!
Your family is in my prayers! Never settle for an answer if it doesn't feel right to you instincts. A mother's instincts are right 99% of the time. Sounds like you have a good doctor, but if you ever question, get 2nd, 3rd and 4th opinions if you have to. Make 'em listen to what you are saying! And keep the faith!

Jeanette said...

Stopping by from SITS! I'm so glad that your son doesn't have more of a problem. Scary for mom though! Hugs to you!

Kathy said...

I am so emotionally drained right now and starting to get comments from people about how my disbelief is stopping God from healing Nate. We will NOT be going into that right now :) BUT I wanted to share these two amazing comments that I got on Facebook. I linked to this post and two men that we attend church with commented....

(1)---I can see how the final diagnosis was a huge reason for thanks, and I am happy along with you. But I'm still saddened for what the child will have to go through. "It is good for a man to bear the yoke in his youth" and I hope and trust it will all work out to make him strong, brave and righteous.

(2)--Nate's a neat kid. I don't think anything even slightly bad should happen to Christian kids with kind hearts. But I don't have the wisdom to know how God uses such things. Hang in there Nate, just a bump in the road, not a roadblock.

Wow huh?

Karen said...

I'm sorry you and your son are having to deal with this. But at least it sounds like it's not going to get worse.

I'm stopping by from SITS to say hello!

edie said...

My dear friend Kathy,
My heart breaks for you, as you deal not only with the immense stress of a child's illness, but then the spiritual abuse of someone who would dare say that your lack of faith is somehow at play here. Surround yourself with those who will uplift and encourage you----and pray for you and your family---instead of somehow casting doubt and blame. Noone is to blame here. Everything that comes in our lives gives us opportunity to trust in God and in His will. His word is rife with examples of people who suffered not because of their lack of faith---but because of the strength of their faith. We find meaning in our suffering only through the cross of Christ. Our posture toward Him---no matter what our circumstances---is one of humility and repentance. He is God. We are not. His ways are mysterious and we must learn over and over again to trust His sovereignty.

I pray for the peace of God---which surpasses all understanding---to keep you and sustain you in these trying days. And may His love surround you and Nate as you like never before.

I'm so thankful for you and for the tremendous encouragement you've been to me. I will pray for you often, keeping you and your family in my heart.

Cling to the cross. My love to you all.

Hugs,
edie

Night Owl Mama said...

Sorry to hear that it was a mystery for so long but good that you have some answers Technology advances every day and hopefully they will find something that will help your son. He's a good looking boy and from a net point of view I couldn't notice it til the last picture. hugs to you and for him. Thanks for visiting my blog :)

Mr. and Mrs. Nurse Boy said...

So glad your son is OK! God is so faithful!

I am glad you found our blog! We love to make new bloggy friends. You have a beautiful family and are quite the busy mom, I'm sure.

We love our table, too. Thanks for the compliment. We actually found it at Nebraska Furniture Mart about 2 years ago and I think it was around $700 for everything. I noticed that you are looking for a table. I don't know if they ship, but you might be able to find the table on line and find a local store that sells it. We thought it seemed FAIRLY affordable and it is fabulous during the holidays.

Again, so glad you found us. I will be back :0)

Mrs. Nurse Boy

becca said...

wow, found you on my followers list and see you have 4 boys and a girl too. My 4th boy isn't here just yet, and my daughter is my oldest (she's 10), but good to see someone in a similar boat :)

Traci @ Beneath My Heart said...

Wow, I have never heard of that either. I'm glad it is localized and won't get worse.
You have a beautiful family. I LOVE big families!
Thanks for stopping by my blog and for praying for my sweet mom.
Blessings to you,
Traci

Dee said...

What a pretty blog Kathy. I am sure God is watching over Nate. I love that name. Thank God his disease isn't fatal.

Listening out for more news.

Anonymous said...

Hi Kathy,

I work at the Scleroderma Foundation and we subscribe to Google alerts. Your blog showed up. We publish a quarterly newsletter called the "Scleroderma Voice." In that magazine, we have a section called "My Space" where young people can write about their disease and inspire others to keep on going, even though this disease is a terrible one. Your son is very blessed to not have the systemic form, although en coupe de sabre can be very disfiguring.

If you are interested in him being a part of our magazine, please contact Sondria Berman at sberman@scleroderma.org or call her at 978-624-1247. Thank you and God Bless you!