Lisa and Tom's wedding

Congrats Lisa and Tom!!

I was so in "LOVE" with this beautiful cake. Who wouldn't be. It was layered, white cake on the top, cheesecake on the bottom!! SOOOO Yummy!

A little time to relax and let loose....

We had a fantastic time with our friend, Aubrey, today! The kids got to let loose and have fun!!!

We first met Aubrey last year through The Littlest Heroes Project and ever since we've been

addicted!!

Thanks Aubrey for all you hard work and wonderful talents!

Notice Riley on this wall ?!?!?

I love this saying!

Caught Aubrey in ACTION!!

Surgery

Hi!

Just wanted to post a quick note that Keegan will be having his chiari decompression surgery in mid to late March. So far we have a questionable date - March 19Th. I should know more at the end of this week.

Also, I borrowed this from a friend:

Spare time?

So, what does a mom with a ton of spare time do with her time??? Well, she makes hats of course. My sewing machine and I have been best friends lately. We've make pink ones, and stripes, and Packers, and cupcakes, and hearts, and butterflies, and footballs, and basketballs,and oh so much more. And..they have been selling like hotcakes. Yes, I said selling! I've made at least 50 hats since Christmas and I am not sure when I will stop.

I had been making hats for friends kiddos, and friends, and even all the kids in Riley and Keegan class, and even the teachers kids. Until, one of the mom's from Riley and Keegan's class LOVED her daughters hat so much that she wanted to BUY a few. So, I made a few for her and sold them for 5.00 each. Then she took some to the school where she works and everyone one was eating them up. Who knew it would become a tiny business.
Now, my spare time is not so much!!

If you to are interested, leave me a note in the comment section and we will see what we can do!!

PLEASE make sure to read the post below!!!

A family in desperate need

I want to introduce to you my little friend Katie, and her mom, Laurie. Katie is a a dear sweet little girl with Chiari Malformation. Katie has had 2 surgeries for her Chiari. Her first surgery was done by a Neurosurgeon and was "botched". Her mom found me via the Internet and I lead her to our NS who did a second surgery and cleaned up the mess from before. We met face to face for the first time while Katie was in the hospital recovering from her 2ND surgery. Katie is doing well at this point, but her mom is struggling big time. Please take a moment to read this article ~ Katie Lanala

Since this article has been published her mother filed divorce from her father. Katie also has a 2 yr old little brother. This family is struggling big time. They live in an apartment now which she can barley afford, they have very little income coming into the home, and they are in need of many items.
Here is a list of items they need:

- cleaning supplies
- pull ups, nuks, 2 yr old supplies....
- shampoo, conditioner, shower stuff...
- laundry detergent, fabric sheets,....
- Gas cards to get back and forth to Madison for Katie's appointments
- grocery store gift cards........
- jammies, socks, and undies for the kids...

if you have a place in your heart for this family like I do, please donate. Every single penny will help this family survive day to day life.
I have started a pay pal account for Laurie and the kiddos. Please see the upper left hand corner of my blog.

I will post every now and then on the status of this family and Katie's recovery.

Thank you so much.

It's got to get out there

It's been a few days since I've blogged. I have been struggling with where I want this blog to go. I feel it needs a change, for my readers and for me. Where though, is the big question. Do I want to keep it as a "trail mix" type of blog? Or should I keep it as a "medical" type, or just strictly "family"/chiari malformation/craniosynostosis ~ and that's what I have decided to do. So, I guess it's not much of a change after all.

Over the last few weeks there has been a lot of change within the the cranio world out there. My good friend Amy Galm is the president of Capps kids. She has done a lot of work restructuring the site - http://www.craniocuties.com/, getting more families stories, finding out which neurosurgeons and plastic surgeons are the best, and spreading awareness. It is true amazing with what she had done for this community.

As many of you know, she is also trying to get an awareness walk set up for next fall in either New York City, or on Long Island. I am so excited about it all. If you feel the need to donate to the walk cause, there is a link on the upper left had side on my blog. Every single penny counts!!

We've been passing out awareness cards to the pediatricians offices to help spread the awareness. If the peds aren't up to speed, who else is going to help these poor children?

I know for us, it was our county health nurse who diagnosed both children. She would come to the house to weight and measure Carson and Cooper so I didn't have to take the to the office during peek RSV season.

Amy has also been busy designing window decals, bracelets
and calendars to get the word out.

It is truly amazing!

So while all of this NEW and up and coming exciting stuff is going on, I feel the need to keep blogging about the kids conditions to help spread awareness.

Please go and check out the look of the new site ~ http://www.craniocuties.com/

And if you "think" that a child you know has either craniosynostosis or plagiocephaly, please speak up and direct them to this link.

A change in plans

THANK YOU to everyone who sent prayers to our little friend Kaitlyn and her parents!

Monday morning, at the appointment with the neurosurgeon, the plans to do surgery changed. The NSG felt that maybe he was jumping the gun with surgery and took a few steps back. After explaining the options and the outcome with Jenni and Kirk, he left the ball in their court to decide if surgery is the best thing at this point in time. They decided not to do surgery, but to watch her extremely close, and if there is any slight change they would re visit the surgery option again.

So, in many ways your prayers helped this surgeon, Jenni, and Kirk make the right decisions for Kaitlyn at this time!!

Thank you!