Tuesday, October 30, 2012

Since when is "Handsome" a bad thing?

This little tale happened at the beginning of the school year, and I just forgot until now to blog about it.
Christian's class has a class directory that they give to each student. You can opt into the directory at the beginning of the school year by filling out a form with your student's name, phone number, email address and a picture of the student. I was filling out the class directory form along with all the other forms that get sent home at the beginning of the school year.
I never print out pictures because I usually just blog everything and then print my blog into a book, so I don't have a ton of pictures laying around. So I grabbed the only picture I had and it happened to be the picture you see above.
I trimmed it up, glued it to the form and sent it back to school. 
Several days later Christian got of the bus and I could tell something was immediately wrong. By the time we got in the house he was crying.
"Mom, how could you put that picture of me in directory?"
I'm baffled at this point...."What's wrong with the picture, Christian?"
"I look handsome and cute. I don't look cool at all and everybody saw that handsome picture of me."

Soccer Girl

 McKenna wrapped up her soccer season this past weekend. We were very proud of our little #3.
 The best part of soccer had everything to do with friends and nothing to do with playing or winning.
 She loved the social part of the game.
 There was very little actual kicking of the ball, although I did capture this one picture of her..she had just kicked that ball.
 She got some good exercise and ran A LOT!
 Her coaches were the best!

 Her team won a lot because there were several very good players.
 It was fun to cheer her on.

 She did a good job listening to her coaches.
 Will wins the award for #1 fan!!! He was such a good boy.
 He spent hours sitting in his stroller, watching either his brother or sister play while he was strapped in. Don't worry...we kept him happy with lots of snacks!
Great job girls!!!!

Monday, October 29, 2012

A Hurricane Day - Updated @7:45pm

 Hurricane Sandy is here!
Christian asked if he could go outside and play in the giant puddles and I let him because it's really not that bad.
 This is just the beginning of the storm and we have giant puddles in our yard already that have never been this big before. Things could get interesting. I'm just thankful we still have power. If the power does go out, we are ready.
 This is actually shaping up to be one of my favorite days ever.
Ryan came home from work early. It's cold and wet and we're all snug inside.
 It's a pj day. There's nothing I love more than sitting on the couch reading books with my littlest man. Today I found out that he knows the difference between Thomas and Percy.
 McKenna read to me :)
 McKenna also has a pet ZhuZhu that she's in love with right now.
She puts it down for a nap and feeds it and acts like it's her baby.
If that keeps us from having to get a real pet, then I'm happy.
 We worked on our Operation Christmas Child Shoe boxes this morning.
We packed 10 this year, thanks to the fact that we bought a little here and there all year long.

I hope all of my East Coast friends stay safe and are snug inside too.

UPDATE @ 7:45pm:
We're still snug and doing great. The wind has really picked up and the rain is still coming down hard. My parents lost power over 2 hours ago. When they called the power company they were told it could be up to 7-10 days until their power is restored. I'm hoping that's a worst case scenario. They do have a generator that they can power up if necessary. Pray for them, that their basement doesn't flood and that they will regain power sometime soon.

Sunday, October 28, 2012

Friday, October 26, 2012

Pictures for Daddy

Ryan's been gone all week on a business trip. Here's a peek at some of the cell phone pictures we've been sending him.
Christian rocked his last soccer practice of the season.
Now we're just hoping for a win this Saturday. One win would be nice.
I love fall sunsets.
"New" gymnastics outfit from a friend.
As if she wasn't obsessed already. This new outfit from Natalie sealed the deal.
The best part about a trip to the Outlets are all these characters the kids get to sit in.
We do not put money in them. We just sit in them and that in itself makes everybody happy.
You have got to be kidding me! Christian now has an appointment here.
The weather has been unbelievable. Upper 70's at the end of October...bliss!
He got off the bus carrying his chapter book.
Walked in the house, sat down on the couch and started reading. 
New haircut for me this week. 
I only get haircuts 3 times a year...if that... so this is a big deal.
I'm always crazy last minute about it. I get to the point where I can't stand my hair and then find somebody who will cut it that day.
McKenna is most definitely my favorite hair stylist. 
Who wouldn't love this look?
Something big is brewing at my house and I can't wait!!!!!!!!

Wednesday, October 24, 2012

This is long...Sorry...The latest on Will's Skin Conditions

It's taking a lot of effort to write this post.
I think I've thought about this so much over the past few weeks, my brain is just weary from thinking about it.

Two weeks ago we met with a Pediatric Dermatologist.
At the time we knew for sure that Will had mollescum contagiosum.
It's a very common virus that kids catch from one another.
Will probably got it from a kid at church because that really his only exposure to other kids.
It causes little bumps all over their body.

Will probably had 100 bumps. It was terrible. Totally out of control. All over his torso, inner arms, it was just starting to spread to his face and legs. He would wake up at least three times a night itching and scratching.
By the time we saw the Pediatric Dermatologist the skin on the left side of his chest and under his left arm was absolutely raw. It was awful.
Hanging out at the doctor's office. His least favorite place!

Your body will eventually fight off the mollescum virus, it just takes a long time for the body to recognize the virus because it's just in the epidermis layer (the skin layer) of your body.
While you're waiting for your body to recognize the virus the only treatments are freezing the bumps off or having them cut off. That was out of the question for my little boy with 100 bumps. We tried some home remedies, we tried some herbal things, and several different products that people on the internet swear works. None of it worked for us.
This is a cell phone picture so it's not great but you can see the bumps on Will's left arm.
The pediatric dermatologist (PD) told us that the best thing to do was pick at the bumps. I had not done that to Will because it's painful and the poor boy has endured enough pain with his finger situation. I didn't want him to think his mommy was purposefully hurting him all the time. But the PD said to pick them and make them bleed and then the body will realize something is wrong and start to fight the virus on it's own.

That sounded like a bunch of baloney to me, but we tried it. Every night after bath time Ryan would hold Will down and I would squeeze a few of his bumps. Awful. And we would rub the poor boy down from head to toe with vaseline.

We also started some serious praying. Ryan & I would pray when we would lay Will down at night. I would pray for Will when I was putting Christian to bed and McKenna (who just randomly prays whenever she thinks of it...I love that) would pray "Dear Jesus, please take Will's bumps away."

The PD also diagnosed Will with severe ezcema. That totally caught me off guard because Will did not have any skin problems up until this point. But the PD felt like the itching and raw skin was a result of the ezcema, not the mollescum. The doctor thought the mollescum was spreading like crazy because of the ezcema. So they prescribed a steroid cream and literally 24 hours later his skin looked remarkably better.

Two weeks later: Any symptoms of ezcema are completely gone. The mollescum is drying up and disappearing. I would say it's 70% gone (and it could have taken up to 3 year to clear up). Once again we are seeing the Lord use doctor's and their wisdom to bring healing to our little boy.

To make a very long story short....Will's immediate skin issues are healing. I'm guessing that in two weeks there won't be any ezcema or mollescum symptoms left!!!

Onto the rest of the story.....

Will was also diagnosed with urticaria pigmentosa.
It's a skin disease that Will was born with.
There is no treatment.
It is not contagious (FYI: when someone shares a medical diagnosis..don't ever let the first words out of your mouth be "Can I catch it?" It's insensitive and hurtful).

Will basically has what look like fairly light colored large freckles all over his body.
To be exact, he has 17 of these spots.

Ignore the snot on his shirt :)
You can see two spots on his face in this picture.

They look like they're no big deal.
Oh, but they are.

There is an excessive amount of mast cells in his skin.
The cause for the excessive amount of mast cells is pretty complicated.
I would have to go to medical school to completely understand it. That's not gonna happen!

This disease usually peaks between the ages of 2 and 4. 
In severe cases children end up with hundreds of these spots.

Will literally has no symptoms of the disease other than the 17 spots on his body.

By looking back through pictures of Will's very well documented life, I figured out that he got his first spot when he was 8 months old. You can just barely see it in this picture.

From what I can tell, one month later he had three more spots. Look right behind his ear you can see a spot starting to grow.

The concern is that if he continues at this rate and gets 17 spots a year, by the time he goes to Kindergarten he will have close to 100 spots. That's very concerning.
 This is the first thing that any of my kids have ever dealt with that doesn't have an answer. There is no fix. There is not a prognosis. It's all unknown. This is a very rare disease that effects 1 in every 200,000 children. Very little research has been done. That makes me feel sick to my stomach. It makes me worry. Yes, I know that there are a million things that could be worse. I'm just sharing my heart. I love this sweet boy more than anything and hate the thought of the challenges this disease could present in his life.
If nothing else, this is teaching me to be faithful and disciplined in prayer. I pray about this every single day, most of the time multiple times a day. I have complete faith that the Lord can heal Will right now, I just pray and pray that he chooses to do it.

It would certainly be a blessing to me if you would pray for Will whenever you think of him. Pray that this disease stops progressing immediately and that no new spots form on his skin. Pray that he doesn't develop any of the internal or allergy issues that can be an issue with this disease.
I'm sure you would all agree that he is just the cutest thing ever...extra "freckles" and all!!