Merry Christmas!

From our family to yours, we hope you have a Happy Holiday season!

Your many reasons

Here is a video my friend Amy is working on for CAPPS. If you need a reason why to donate, here are just a few!!

Keep your eyes open for Carson and Coopers pics!

To hear the music, go to the bottom of my blog page and pause the Christmas music.

Photo and video editing at www.OneTrueMedia.com

We've got spirit Yes we do, we've got spirit how about YOU?

We've got more, we've got more......

Nothing like decorating Christmas cookies with 4 YA-HOO's!

Please help us!!

Dear friends:

Many of you that we have had our fair share of hard times (medically) in the last 4 years. Carson and Cooper (and recently Keegan) struggling with Sagittal and Metopic Craniosynostosis:

(The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart. Metopic The metopic suture begins at the nose and continues superiorly to meet the sagittal suture. Metopic craniosynostosis results in a narrow, triangular forehead with pinching of the temples laterally. Treatment involves releasing the suture and expanding and rounding out the upper face, forehead and skull)

and Carson, Keegan, and Riley with Chiari Malformation:

(This malformation occurs during fetal development and is characterized by downward displacement by more than four millimeters, of the cerebellar tonsils beneath the foramen magnum into the cervical spinal canal. This displacement may block the normal pulsations of CSF between the spinal canal and the intracranial space. This form of Chiari malformation may be associated with syringomyelia/hydromyelia. It is diagnosed more commonly in adolescents or adults.)

All in all, we have been through 13 surgeries in the last 4 years. That is way to many for anyone to have to go through.

As many of you may not know, there is NO CURE for either condition. I know for a fact, that there is slim to no fed money going towards Chiari research. As for Craniosynostosis (premature fusion of the skull bones), It is up to each and every cranio family to help spread awareness!!

To do this, I need YOUR help! My dear friend, Amy, President of cappskids.org, is trying to get an awareness walk planned for the fall of 2010 in NY. To do so, we need 100 people to raise at least $100.00 each! Just to get the walk off the ground.

Please, we are in the season for giving right now. If you could donate at least $1.00, that would get us closer to having our walk for Craniosynostosis Awareness

To donate, please click the LINK in the upper left hand corner of my side bar that say Craniosynostosis Donations HERE

Our family, and so many of our Cranio friends, THANK YOU from the bottom of our hearts!

*If you donate, please leave me a comment, you don't have to mention the amount, just your name.

Many of you may not also know, but I am the sponsor coordinator for CAPPSKIDS. I help match families going through surgery with families that have already been through surgery with a child. It's sort of a mentoring program.

Snow Storm Allison - December 8 & 9, 2009

Thanks for the 14+ inches!!

Christmas is a time for giving, right?

My friend, Michelle and her beautiful family could use your help!!

Here is their story (Michelle and Brian have 3 beautiful children; Karly, Braden, Ruby (who's twin died before birth and has Down syndrome) and a beautiful Angel daughter, Lydia.)

"New Adventures
Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family. Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home! Lera's journey will be followed on her new adoption blog!
This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?

After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.

.
For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family. We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

This is Lilya - soon to be Lily.

Our daughter Lily. "

So, with all that said, the Zoromski's are having an Auction to help raise money to bring Lily home, Please if you are looking for Christmas gifts, please go and check it out. Every penny will help.

* Auction ~
Our auction to help raise funds for Lily's adoption started today on Lily's blog. It will run until next Tuesday, December 15. Please check it out - and if you could pass the word around, we'd really appreciate it!

We have so many really cool items - something for everyone!

http://ahomeforlily.blogspot.com/

Let the Holiday Season begin!

Appleton Christmas parade!

Here is Riley(grey sweatshirt, letter M on her back, hat), Papa, and Sam running their little hearts out - 1 mile! They made it! I think the dilly bar at the end gave them a little added motivation!

The rest of the world running with them.


I love the downtown Angels

Appleton is home to Pierce Manufacture ~ Fire trucks



My High school band

Wish I could have gotten a picture of all the leg lamps in the window ~ PRICELESS

Good New, FINALLY

Yesterday we were in Madison to hear the results of Riley and Carson's MRI's that they had done the week prior. Dr. I had nothing but good things to say.

We still aren't sure why Riley is having the back/ spine pain, but as long as it is nothing big, we can deal with!!

Both girls are on a "as needed" schedule or again in 1 yr!! yeah!!

Now, to put all my focus on Keegan!! We will be back in Madison on Thursday for his EMG.